Reasons
At an OB case conference they were presenting the case of a pregnant mother who had spina bifida herself. They pointed out that they had done a detailed ultrasound in the second trimester to see whether the baby she was carrying had spina bifida when my neonatal colleague asked, "If the baby was found to have spina bifida, would she have aborted it?"
It's a fascinating question. Would a mother with a congenital anomaly abort her baby if the baby had the same congenital anomaly? It raises the issue of why parents abort babies who have problems such as spina bifida, Trisomy 21, or other birth defects. I remember attending a prenatal session with a couple whose baby had an anomaly - I can't remember exactly what, but I think it was spina bifida - and they were discussing with the physicians their options, which included terminating the pregnancy. They were very open and talked about possible reasons for aborting the baby. They said that if they terminated the pregnancy it would not be because they didn't want to bother with a defective child, but because they didn't want the child to suffer in life.
Although I remained non- judgemental at the prenatal session, I didn't quite buy what they were saying. For the sake of the baby they were aborting him or her? I suspect the real reason they and most parents pregnant with anomalous children terminate the pregnancy is for themselves, so they don't have to deal with the problem. Why, I suspect their reasoning goes, should they have to care for a child with a defect when they don't have to? Maybe I'm being too hard on parents - and I would certainly hate to ever have to be in their position - but I don't think so.
And even if they were terminating the child for the child's sake, to spare him or her from suffering, is that what the child would have wanted? Do children with spina bifida suffer so much that they wish they had never been born? Perhaps it varies from child to child, but I'm guessing the answer is usually no.
Nobody knew the answer to my colleague's question at the conference. Fortunately, the fetus in question had no birth defects.
It's a fascinating question. Would a mother with a congenital anomaly abort her baby if the baby had the same congenital anomaly? It raises the issue of why parents abort babies who have problems such as spina bifida, Trisomy 21, or other birth defects. I remember attending a prenatal session with a couple whose baby had an anomaly - I can't remember exactly what, but I think it was spina bifida - and they were discussing with the physicians their options, which included terminating the pregnancy. They were very open and talked about possible reasons for aborting the baby. They said that if they terminated the pregnancy it would not be because they didn't want to bother with a defective child, but because they didn't want the child to suffer in life.
Although I remained non- judgemental at the prenatal session, I didn't quite buy what they were saying. For the sake of the baby they were aborting him or her? I suspect the real reason they and most parents pregnant with anomalous children terminate the pregnancy is for themselves, so they don't have to deal with the problem. Why, I suspect their reasoning goes, should they have to care for a child with a defect when they don't have to? Maybe I'm being too hard on parents - and I would certainly hate to ever have to be in their position - but I don't think so.
And even if they were terminating the child for the child's sake, to spare him or her from suffering, is that what the child would have wanted? Do children with spina bifida suffer so much that they wish they had never been born? Perhaps it varies from child to child, but I'm guessing the answer is usually no.
Nobody knew the answer to my colleague's question at the conference. Fortunately, the fetus in question had no birth defects.
posted by neonataldoc at 5:44 PM
424 Comments:
I have a hereditary condition. As well as having a high likelihood of any baby inheriting it, it also makes pregnancy itself inherently risky with high rates of PROM and associated miscarriage.
For those reasons I will not be deliberately seeking to conceive a child but I also know better than anyone that life with my impairments can be just as good as any and so if I did get preggers I'd press on with optimism and determination and the best forward planning that any disabled baby ever arrived into this world with.
That said, I'm a lesbian so I'd be pretty astonished if I got pregnant by accident. Hmm.
This is a fascinating question, as you say, made much more complicated by medical advances. Does it change how we think about the question when we consider how many babies with anomalies would have died soon after birth years ago, versus the number of anomalous babies who receive top notch medical care and "make it" today? Just because we can care for a child with an anomaly, are we morally obligated to birth that child and rack up medical expenses and emotional pain to treat a condition that may or may not be compatible with a "happy" life? Likewise, just because we can abort a child with an anomaly are morally free to do so? You're right. It's very complicated.
Yo,
Tagged ya!
Flea
On the NYT front page in June of 2004 was an article about termination for medical reasons. One of the women featured had terminated TWICE for an extra digit in the pinkie finger...obviously easily fixable, and something that she herself had been born with and had surgically corrected.
Neonataldoc, very well said. I would love to hear a parent who terminated for medical reasons (even complex ones) admit that it really wasn't to save the child from "suffering". The adults with disabilities that I know certainly consider their lives worth living.
This situation reminds me of that movie, "The Twilight of the Golds." Rent it if you have a chance. Very intriguing.
The ability to terminate pregnancies that would culminate in the birth of children with "defects" is one of the reasons that so many are enamored with abortion. The creator of IVF, I apologize for forgetting his name, said that we have reached a point in history where we have to be concerned with the quality of our children.
Margaret Sanger, who created Planned Parentood, openly admitted that abortion was necessary to control the number of feeble-minded ( and also blacks, latinos, and Catholics) who were born.
The eugenic purposes of abortion cannot be glosses over.
Great reading. Of course there's that one anonymous who's always concerned with costs, lol. It's absolutely about themselves. I know when my "anomalous" child was born (wouldn't have aborted for various reasons, but anyway) I was still so upset......until I realized what was so upsetting...I was worried about what other people thought. {shrug} . When I got over that BS life is what you make of it. Nothin' wrong on my end ;)
Yeah, why should a young couple be saddled with the demands of a cripple? Life's too short, and we have the tools to decide what we want. Spina bifida occulta is not life-changing, but I wouldnt think twice before aborting a fetus with congenital anomalies that would compromise my life. But then there are some people who make rearing a handicapped child their whole life...maybe because they dont have a life of their own???!!!
I've recently been having this would-you/wouldn't-you conversation with my friends. We work with children with autism, and though that's not detectable in an ultrasound, we are often around other children whose birth defects were.
One friend grew up with a brother who has DS. He is severely retarded, and must be under constant supervision. She often wonders who she'd be without her brother, and feels like it made her a much more compassionate person
I see the cruelty that kids inflict on one another, and it makes my heart break. I have so much respect for the kids who deal with that on a constant basis and come out stronger for it.
That said, I believe there has been research that has documented (though don't quote me because I'm too lazy to search for it) the depression and related sequale that occur as a result of various birth defects, developmental disorders, diseases, etc. Basically, it showed that people who are on the fringes of "normal" and want to fit in, but don't, are at a much higher risk for developing depression, etc.
I like to believe that, as a parent, you have the ability to effect your child's self-esteem. But, I don't know if that's always the case. I just hope I never, ever have to be in a position to actually consider abortion.
"That said, I believe there has been research that has documented (though don't quote me because I'm too lazy to search for it) the depression and related sequale that occur as a result of various birth defects, developmental disorders, diseases, etc. Basically, it showed that people who are on the fringes of "normal" and want to fit in, but don't, are at a much higher risk for developing depression, etc."
Sorry - gonna have to call you on that one. That is absolutely not true.
As we see again and again, SOME people just choose to see our kids as so different that they are worthy of death. They cannot accept different, it scares them. I think the Doc is on the right track here. This isnt about sparing anyone pain. If it were, the people perpetuating this huge lie would be far more concerned with finding less brutal ways of killing their offspring. Anyone who knows even bare bones minimum about D&E cannot realistically say they spared their child anything, the horror of what happens in a D&E speaks for itself. And for anyone who does not believe that it is a brutal, violent death, read the decidedly unslanted Carhart case. When Doctors nonchalantly discuss the proper traction for dismembering little arms and legs in living human beings, then you cannot continue to keep the veil over your eyes. THAT kind of death is preferable to a life...any life? It speaks volumes about us as a people, that we feel the need to dispose of these children at any cost.
I cannot say it better than the Supreme Court Judges themselves:
Justice Scalia, dissenting.
I am optimistic enough to believe that, one day, Stenberg v. Carhart will be assigned its rightful place in the history of this Court's jurisprudence beside Korematsu and Dred Scott. The method of killing a human child--one cannot even accurately say an entirely unborn human child--proscribed by this statute is so horrible that the most clinical description of it evokes a shudder of revulsion.
Justice Kennedy, with whom The Chief Justice joins, dissenting
As described by Dr. Carhart, the D&E procedure requires the abortionist to use instruments to grasp a portion (such as a foot or hand) of a developed and living fetus and drag the grasped portion out of the uterus into the vagina. Id., at 61. Dr. Carhart uses the traction created by the opening between the uterus and vagina to dismember the fetus, tearing the grasped portion away from the remainder of the body. Ibid. The traction between the uterus and vagina is essential to the procedure because attempting to abort a fetus without using that traction is described by Dr. Carhart as "pulling the cat's tail" or "drag[ging] a string across the floor, you'll just keep dragging it. It's not until something grabs the other end that you are going to develop traction." Id., at 62. The fetus, in many cases, dies just as a human adult or child would: It bleeds to death as it is torn from limb from limb. Id., at 63. The fetus can be alive at the beginning of the dismemberment process and can survive for a time while its limbs are being torn off. Dr. Carhart agreed that "when you pull out a piece of the fetus, let's say, an arm or a leg and remove that, at the time just prior to removal of the portion of the fetus, ... the fetus [is] alive." Id., at 62. Dr. Carhart has observed fetal heartbeat via ultrasound with "extensive parts of the fetus removed," id., at 64, and testified that mere dismemberment of a limb does not always cause death because he knows of a physician who removed the arm of a fetus only to have the fetus go on to be born "as a living child with one arm." Id., at 63. At the conclusion of a D&E abortion no intact fetus remains. In Dr. Carhart's words, the abortionist is left with "a tray full of pieces." Id., at 125.
Justice Thomas, with whom The Chief Justice and Justice Scalia join, dissenting
In the almost 30 years since Roe, this Court has never described the various methods of aborting a second- or third-trimester fetus. From reading the majority's sanitized description, one would think that this case involves state regulation of a widely accepted routine medical procedure. Nothing could be further from the truth. The most widely used method of abortion during this stage of pregnancy is so gruesome that its use can be traumatic even for the physicians and medical staff who perform it....
In MY mind, the person for whom it is most gruesome is an innocent child, who has done nothing whatsoever wrong, except have 1 too many chromosomes and a future riddled with the possibility of strife. Of course, we grownups arguing his fate know exactly where we and our "normal children" are headed. @@
Eugenics is eugenics is eugenics. Whether it be forced on us for race, sex, religion, or ability. Maybe someday when we get past the semantics of this argument, we will realize what it really is we are fighting for, human dignity. Those who abort their children to "spare them pain" and yet inflict such horrors on them may choose the indignity of dismemberment death for their children. And we who recognize the beauty inherent in ALL people will continue to fight for their kids and for our own. And as much as they will argue that they do not demean and belittle our children, they do it every single day. If this were not about hatred of the disabled, they would not bother to attack us or our kids.
PS
If we, as a society, can kill at will, any living thing whose life we have decided is intolerably painful, sad, unworthy, useless...then where shall we start? The infirm, elderly, mentally ill, criminals, prostitutes, thieves....anyone whose life we deem as suffering. Who among us is suffering? Who among us is not, in any way, suffering? OK, who gets to draw the line?
I just don't think most adults want to be inconvenienced by anything remotely scary or different. It makes me so sad to hear of individuals making such decisions.
I get great joy out of my children who have Alpha-1, a liver/lung genetic disorder. Their zest for life is invigorating to me.
What's next? We test a fetus's genetic code for the possibility of cancer, and because of that we end the pregnancy. UGH!
we already can test for Huntington's Disease, which doesnt occur until a person is in their 30s. And yes, I have heard of abortions due to the gene.
It is possible to determine if a fetus is carrying the gene for HD. The prenatal procedures currently available are amniocentesis and chorionic villus sampling (CVS). It is advisable for a couple to discuss prenatal testing options with a genetic counselor prior to becoming pregnant. If an at-risk partner wishes to be tested for the HD gene, it is recommended that the testing process be completed before conception.
If the parent who has a 50 percent risk for HD does not wish to undergo testing but the couple wants prenatal testing, then nondisclosing testing can be performed. Nondisclosing testing is performed by linkage analysis. Linkage analysis compares the chromosomes obtained from the blood samples of several family members to those of the fetus. In this way, the risk that the fetus is carrying the gene for HD can be estimated. A genetic counselor should be consulted well before conception since blood samples from family members must be obtained and analyzed in this type of testing.
http://lkwdpl.org/hdsa/hdtest.htm
Carrier testing for a gene disorder has as its primary goal to establish the carrier status of an individual or a couple so that they can exercise reproductive choice. These tests are often directed at particular ethnic groups (e.g., Jews for Tay-Sachs (TS) disease, Yupik Eskimos for congenital adrenal hyperplasia (CAH)), who by virtue of their ethnic background are at high risk for being carriers of these conditions. Among Ashkenazi Jews, 1 in 30 are carriers for TS; and among the Yupik Eskimos, 1 in 10 are carriers for CAH. Carrier testing is also instigated by a positive family history such as Duchenne muscular dystrophy, fragile X syndrome, or certain chromosomal disorders.
this brave new world is pretty scary, actually. There is a breast cancer gene, BRAC. Should we terminate for that? What about for cleft lip? Blue eyes? They say blondes have more fun, does that mean we should annihilate brunettes? Is that subjective? Are they suffering? I guess thats why we CANNOT draw the line in the sand. Or better yet, we SHOULD not. Whoever draws the line has their own belief systems, and the heck with the rest of us who like our brown hair just fine.
FWIW, the drs. working on it say they are between 5 and 10 yrs. from having a prenatal test for autism.
http://www.msnbc.msn.com/id/7899821/
Wow, lots of interesting comments here as usual. Some disturbing, some not.
I agree, some parents hide behind the fact that they don't want the kids to suffer and it's a bunch of baloney. By the same token, it's o.k. to say, hey, I don't want to raise a child like this HOWEVER I think as an adult, I think you need to accept the responsibility that comes with having that child, whatever it may be. That means, whatever it may be at birth and whatever it may be as it grows up. It's easy to terminate pregnancies on the grounds that there are defects but we don't allow that when the kid is messed up at ten, do we?
As the mother of a severely disabled child, I agree it's a hard life, for him and for me. It's a lot of work but I do it because I love my child, both before he was born and now. My goal is to take care of him for the rest of his life at home. I have allowed myself to consider options when he is older, say after 21, but for now, this is my plan.
Having a disabled child did not change the way I think about having a disabled child. It changed my behavior in two other ways. First, when I didn't know what caused his issues, I thought long and hard before having another child. I decided that I wanted to focus my energies on him and had my tubes tied.
Second, since I have seen how difficult "his" life is, it changed how I think about "my" life or my future. For example, if Dear Son passed and I had cancer, I would not chose to treat it. I would enjoy every minute I had and be done with it. I don't ever want to sit in any more hospitals or deal with the medical aspects of those things. And that includes if the cancer is curable.
Now then, as for the anonymous 745 who posed the question about being morally obligated to care for that child and "rack up medical expenses". I find offense to that term. Medical expenses can be high no matter what age a person is-are we going to put a dollar figure on what lives are more valuable than others, and who gets to decide that? By the same token, if you get sick late in life and rack up the same dollar amount, does that mean we shouldn't treat those folks? Or are we going to say we won't treat anyone in this world, when their medical expenses reach x dollars? Just sayin'.
For anon1238, "why should a young couple be saddled with a cripple?" Nice comment. If a "young" couple is adult enough to have sexual relations, then I think they should be "responsible" enough to take care of that child. To say, we can't be bothered with people or things that are "less than perfect" isn't very nice. Maybe it's God's way of teaching them patience and compassion. Or maybe it's not.
As for the part about having no life, you would be partly wrong. I can't speak for anyone but myself. I agree that caring for Dear Son takes an enormous amount of work and that for the time being, taking care of him IS my life. Yes, that's hard. But it's not because I don't want a life or can't have one but rather, we don't have any daycare for the disabled, so there aren't any options to work full time and make more money which would allow him and I more choices in life. We don't have the same services for mothers and fathers of disabled children as we do for parents with normal children, such as daycare. While our laws specifically state that daycare centers can't discriminate, most aren't equipped to handle them and they don't have the number of workers to make it cost effective. Daycare is one example of many.
Finally, I find it extremely interesting that the workplace today promotes the idea of diversity and doesn't allow for discrimination of any kind. It's too bad,this idea isn't mainstreamed for the disabled babies of the world. What a different world it might be if we didn't allow such things.
I've asked this before, but I'll ask again. To the people who are horrified at the idea of prenatal testing followed by abortion for diseases that kill people in their 30s or simply leave them with high probabilities of terrible lives: Suppose there were a non-destructive screening test for unfertilized oocytes that allowed potential parents to see before conception that, if they try for a conception this month, the child would be a BRCA carrier or have Huntington's or autism. How would you feel about a potential parent who decided to use birth control for that month and try again the next time she had a "healthy" oocyte? Would you label her an evil, genocidal baby killer too?
Dianne,
you are talking about potential vs ACTUAL lives. Unfertilized eggs are not people. No one really CHOOSES to have a child with medical issues, but it happens, and it is a risk you take parenting ANY child that they will have one issue or another.
Dream Mom...gosh you are so intelligent. You nail it everytime.
and also, we take folic acid in the hopes of preventing certain birth defects. In effect, we are trying to outsmart Mother Nature by making those eggs healthier. Same same.
And even if they were terminating the child for the child's sake, to spare him or her from suffering, is that what the child would have wanted?
This sort of what-if always bothers me because the answer, ultimately, is "maybe". It varies from person to person and situation to situation. I'll answer for myself: I have a mild, probably genetic disorder. In the context of my family and life as it is for me, it hardly even matters. In another family, another context, it would make life a living hell that I doubt I would have stuck out for as long as I have. I'd rather never be born than be born into such a family. Hence, I'm strongly pro-choice on the issue of abortion for "frivolous" medical problems (ie extra finger, wrong gender, asperger's sydnrome, whatever): if the woman who is pregnant feels she can't handle a child with that problem, she probably can't and therefore shouldn't be forced to attempt it.
you are talking about potential vs ACTUAL lives
How is a newly fertilized egg any more or less alive than an unfertilized oocyte?
"They said that if they terminated the pregnancy it would not be because they didn't want to bother with a defective child, but because they didn't want the child to suffer in life."
As much as some wish to "poo-poo" this, it is a fact. It's not the defect, anomaly, added work, added expenses, etc. that weigh most heavily in the difficult choice to terminate. For most, it truly is the fact that there is no cure for the mental retardation that the child will have to endure their entire lives (with T21 and many of the other trisomies, anywyay). If there was a pill or a shot or an operation that could correct it, that would be great. Unfortunately, that's not reality and a fairly large percentage of parents (most of whom THOUGHT that they would never choose to tx) do so when faced with a condition that causes mental compromise with no hope of respite from said problems. That's not the type of so-called life experience that most parents wish to force their children to endure.
Also, regarding D&E: Babies are not "ripped out limb by limb" and bleed to death while they are alive (at least not in most cases where parents are putting the comfort level of their fetus ahead of their own). Doctors have ways of allowing the baby to basically go to sleep and slip away painlessly. There is no pain for the fetus when carried out in this manner. Those articles are used to propegate erroneous information. Sad scare tactics, really. The source is considered, and therefore doesn't mean much.
I just took care of a 12-year-old spina bifida patient who died suddenly, while at home. (I wont get into the medical synopsis here of everything here...)
The paramedics got her heart restarted but the brain flow scan showed that the brain was dead and support was discontinued. Her kidneys and part of her liver were able to be donated.
Her family's grief was raw and overwhelming. They were a lovely family and had taken wonderful care of her over the years. She had obviously brought them incredible joy. They shared pictures of her- vacation shots and such- that showed she had been spunky and full of life.
The family kept saying they were so grateful to have had her in their lives and would always treasure the memories they had of her.
So I don't really have any great statement to add to this debate- just that children with special needs bring their families as much joy as any other child (if not more- i have noted this to be the case in many situations). I believe it is up to couples to decide what they can or can't "handle", (whatever that means- we usually can "handle" much more than we think we can) but opting for abortion means that they are missing out on getting to know a potentially wonderful human being with the potential to bring much into their lives.
Sorry, but I strongly disagree that mental retardation=poor quality of life. The many teenagers and adults with Down syndrome who I have worked with do not consider their lives "so-called" and they do not consider themselves to be suffering--they are not "enduring" but embracing life and living it fully.
"just that children with special needs bring their families as much joy as any other child"
That seems very self-serving, really. Whoppee that the affected child brought their FAMILIES joy. What about the joy of that particular CHILD? They are the ones who must endure the therapies and surgeries and hospital stays and all of the physical, emotional, ant mental pain/suffering that come with issues such as theirs. It's much more selfish and cruel to subject a child to a lifetime (however short or long) of that type of so-called "living"...and for what? The benefit of the OTHER children, parents, etc.? COME ON! Talk about being selfish and cruel all in the name of "life". Let the innocent little ones be free without having to suffer for who knows how long all for the "benefit" of his or her peers, family, and so on.
"Let the innocent little ones be free without having to suffer for who knows how long all for the "benefit" of his or her peers, family, and so on."
You just keep telling yourself that. You know - ya'll just don't stop. I can give you thousands of examples of why that statement is wrong - but you'll never be able to give me one example of that being right since you never gave your child that "choice".
Tell me, the children that end up hooked on crack, or as alcoholics, or teen mommies...how is their "quality of life"? Is there a prenatal test for that?
You truly make such feeble attempts to look like you're fighting for a woman's right to choose. It's sad that you don't see how obvious you are. But STOP trying to belittle our children just to try to justify your own decision.
Pain in children and adolescents with spina bifida
Christine A Clancy a1 c1, Patrick J McGrath a2 and Bruce E Oddson a3
The Pediatric Pain Questionnaire and relevant medical records were used to investigate the frequency, intensity, location, and duration of pain experienced by children with spina bifida and to examine the concordance between child self-report and parent proxy report of pain. There were 68 children with spina bifida (30 males, 38 females) between the ages of 8 and 19 years (mean age 12y 8m). Fifty-nine children (87%) were diagnosed with myelomeningocele, six (9%) with lipomyelomeningocele, and three (4%) with lipomeningocele (4%). Forty-nine children (72%) had shunted hydrocephalus. Twenty-six children (38%) ambulated full-time. Fifty-six per cent of children reported experiencing pain once a week or more often. For these children, pain occurred most frequently in the head, back, abdomen, neck, shoulders, legs, and hands. Of the 49 children with shunted hydrocephalus, 43 (88%) reported headaches; 15 of 19 children (79%) without hydrocephalus reported headaches. Children who reported more intense pain also reported more frequent pain and more pain locations. Parents were most reliable at reporting locations of their children's severe pain. Parents of younger children significantly underestimated their children's current pain and worst pain in the past 7 days. Lesion level and ambulatory status were not associated with any of the pain variables. It was concluded that children with spina bifida frequently report clinically significant, yet under-recognized and untreated pain.
Psychosocial adjustment of children with spina bifida.
Zurmohle UM, Homann T, Schroeter C, Rothgerber H, Hommel G, Ermert JA.
Kinderklinik und Kinderpoliklinik der Johannes Gutenberg-Universitat, Mainz, Germany.
Seventy-five patients with spina bifida, aged 6 to 16 years were assessed concerning their psychosocial adjustment and their intellectual function by use of standardized instruments. The findings were compared with those of nondisabled controls, matched for age and sex. Children with spina bifida showed a tendency to be at an increased risk for psychosocial maladjustment. Influencing factors were age, sex, and the degree of handicap. Twelve- to 16-year-old boys and girls displayed significant adjustment problems in specific areas in comparison with their controls.
Physical Status and Psychosocial Adjustment in Children With Spina Bifida1
Jan L. Wallander2, Wendy S. Feldman and James W. Varni
Sparks Center and Department of Psychology, University of Alabama at Birmingham, Orthopaedic Hospital, Orthopaedic Hospital and University of Southern California
Investigated the relationship between the physical status and psychosocial adjustment of chronically physically handicapped children. The status of 61 children with spina bifida regarding six specific disease or disability parameters was determined from medical charts. Their mothers completed the Child Behavior Checklist as a measure of the children's psychosocial adjustment. Children with spina bifida were reported to display on the average significantly more behavior and social competence problems than expected for children in general.
The self-concept of young people with spina bifida: a population-based study.
Appleton PL, Minchom PE, Ellis NC, Elliott CE, Boll V, Jones P.
Seventy-nine young people with spina bifida were given a psychological, medical, carer and occupational therapy assessment. 79 matched able-bodied young people received the psychosocial interview. The disabled group felt themselves to be less competent in academic, athletic and social aspects of self-concept, less supported by classmates, equally supported by parents and friends and more supported by teachers than the able-bodied group. Disabled subjects did not discount the importance of any area of personal-social functioning, and experienced greater discrepancies between competence and importance in most academic, athletic, social and physical appearance aspects of self-concept.
Depressive Symptoms and Self-Concept in Young People with Spina Bifida1
Peter L. Appleton2,, Nick C. Elis, Philip E. Minchom, Val Lawson, Vicki Böll and Pat Jones
Examined self-reported depressive symptoms in 72 young people with spina bifida, ages 9 to 18:11, and matched able-bodied comparison subjects, using the Dimensions of Depression Profile for Children and Adolescents(Harter&Nowakowski, 1987). Independent variables included gender, self-perceptions (including physical appearance), and perceived social support. Young people with spina bifida were at greater risk of depressive mood, low self-worth, and suicidal ideation.
Well I think there should be a prenatal test to identify those prone to depression and then we can also set them free from a "so-called" life of unhappiness.
Isn't this just the fundamental abortion debate on a different level?
Maybe that's an oversimplification, but we're basically talking about the parents deciding whether they want to have a specific child.
Why is the decision to abort a child with a birth defect any "worse" than the decision to abort two perfectly healthy children (not twins) because you want to make sure you stay middle class (publicly acknowledged by Barbara Ehrenreich in the NYT) or the decision to reduce triplets because you don't think you can handle three babies (also an article in the NYT).
In some ways it seems that we have the attitude that people that are "given" severely diabled children should adjust their expectations, sacrifice, and do the noble thing. Funny that we don't expect it from folks carrying healthy pregnancies as well. I think it's a huge double standard.
Per "jennifer" - "You truly make such feeble attempts."
Talk about projection. You obviously know a lot about feeble attempts. That's all you ever throw out there. I guess that's how you and some of the others just like you deal with the day-in, day-out trials that make up your lives. It apparently makes you feel like something special to do whatever it is that you do (rant, rave, and supposedly make a point for your cause). Bully for you. Here's the bottom line - why can't you allow others to think and speak for themselves? Are you that much of a control freak? It must be a major cross for you to bear. Terrible.
Per "anonymous 4:34" - "Well I think there should be a prenatal test to identify those prone to depression and then we can also set them free from a "so-called" life of unhappiness."
Thank you very much. You just proved my main point again. There ARE effective medications and therapies to help correct depression. There are no such animals when it comes to correcting/curing mental retardation due to chromosomal anomalies/trisomies/whatever one wishes to call them. Also, there's only so much that can be done re: paralysis and resultant problems due to spina bifida (depending at which level the defect may be). HUGE difference here. Again, thank you for posting and substantiating this fact.
I'm reminded of Ayelet Waldman's article in salon.com where she essentially urged people to trust the judgment of mothers facing difficult decisions in pregnancies. If a mother feels ill-equipped to face a pregnancy for whatever reason, exercising her legal choice to abortion should be honored. Then again, there is clearly no shortage of people out there who feel they know best what other people should do, and how they should feel about it...
hey Cleo? Those articles are used to propegate erroneous information. Sad scare tactics, really. The source is considered, and therefore doesn't mean much.
That was direct testimony from the US Supreme Court, sweetie. Oh, and it was from YOUR side. Ever read it? Carhart's own testimony is pretty graphic. He himself uses words like dismemberment, disarticulation, sanguinate (that means bleed to death). He also notes that he and most doctors he knows do not believe in, or take the time for, intracardiac injections and the like. Says that it is too risky for the woman to allow the baby "to sanguinate from a dissected umbilicus". Takes too long. He very clearly says that in MOST abortions he does, the baby is alive throughout, up until the very end. How does he know? He watches them on ultrasound. As he kills them. Theres your God.
31. When Carhart performs this procedure, he drains the amniotic fluid before beginning the evacuation procedure in order to avoid amniotic fluid embolus, which he views as a serious and common cause of maternal death or complications. (Tr. 102:1-6.) If possible, Carhart then attempts to grasp and divide the umbilical cord of the fetus, which is the structure that transports arterial and venous blood between the fetus and the placenta, giving the fetus its only source of oxygen. If he divides the cord, the fetus will usually die within 6 to 10 minutes. (Tr. 111:11-20; 189:20-24.) There are instances in which Carhart cannot divide the cord because he is unable to reach it due to fetal position or spontaneous protrusion of a fetal part through the cervical os, preventing access to the cord. (Tr. 111:21-25; 190:17-25.)
32. If Carhart succeeds in dividing the umbilical cord, he does not wait for fetal death to occur before continuing the procedure because once the membranes have been ruptured and drugs administered to induce contractions, each minute of delay causes maternal blood loss. (Tr. 190:2-16.)
Carhart: Just traction and rotation, grasping the portion that you can get a hold of which would be usually somewhere up the shaft of the exposed portion of the fetus, pulling down on it through the os, using the internal os as your counter-traction and rotating to dismember the shoulder or the hip or whatever it would be. Sometimes you will get one leg and you can’t get the other leg out.
Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?
Carhart: Yes.
Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?
Carhart: Yes
Question: Do you consider an arm, for example, to be a substantial portion of the fetus?
Carhart: In the way I read it, I think if I lost my arm, that would be a substantial loss to me. I think I would have to interpret it that way.
Question: And then what happens next after you remove the arm? You then try to remove the rest of the fetus?
Carhart: Then I would go back and attempt to either bring the feet down or bring the skull down, or even sometimes you bring the other arm down and remove that also and then get the feet down.
Question: At what point is the fetus...does the fetus die during that process?
Carhart: I don’t really know. I know that the fetus is alive during the process most of the time because I can see fetal heartbeat on the ultrasound.
The Court: Counsel, for what it’s worth, it still is unclear to me with regard to the intact D&E when fetal demise occurs.
Question: Okay, I will try to clarify that. In the procedure of an intact D&E where you would start foot first, with the situation where the fetus is presented feet first, tell me how you are able to get the feet out first.
Carhart: Under ultrasound, you can see the extremities. You know what is what. You know what the foot is, you know, what the arm is, you know, what the skull is. By grabbing the feet and pulling down on it or by grabbing a knee and pulling down on it, usually you can get one leg out, get the other leg out and bring the fetus out. I don’t know where this...all the controversy about rotating the fetus comes from. I don’t attempt to do that. I just attempt to bring out whatever is the proximal portion of the fetus.
Question: At the time that you bring out the feet in this example, is the fetus still alive?
Carhart: Yes.
He himself uses words like...sanguinate (that means bleed to death)
I very much doubt that. I find it much more likely that he used the term exsanguinate, which does mean bleed or drain of blood. Don't have much medical background, do you?
Yes, of course I've seen that. It's been circulated on the pro-life blogs and websites ad nauseaum. Thankfully, the overwhelming majority of doctors don't handle their business in the way Carhart describes. I wouldn't let anyone touch my baby or me in that manner. The whole reason for choosing to tx is to spare the sweet baby any pain or suffering. Even in tx, that is the goal. There are much more humane ways, despite what some would like others to believe. I'm grateful that the cases of which I'm aware are absolutely nothing like that. The babies were not subjected to any suffering. They had already passed away painlessly and peacefully prior to their deliveries (whether by D&E or L&D).
You said, "How does he know? He watches them on ultrasound. As he kills them. Theres your God." He is not my "god". I worship the real deal who knows my innermost thoughts and reasons. Your judgement of me and others who choose to tx means absolutely squat.
THE COURT: Well, when you tell them about pain and
such that you were talking about before, do you also tell them
about that you do the D&E, it involves dismemberment? Do you
tell them that you tear the limbs off the fetus?
THE WITNESS: I don't use that term, as I say it.
THE COURT: Do you use simple English words so they
know what you are doing --
THE WITNESS: Yes.
THE COURT: -- and what they're authorizing?
THE WITNESS: Yes.
THE COURT: Well, how do you tell them that you are
going to take the limb off?
THE WITNESS: I tell them that in the process.
THE COURT: Do you use "disarticulation"?
THE WITNESS: No.
THE COURT: What word do you use?
THE WITNESS: I tell them that in the process of the
termination we will attempt to get the fetus out as intact as
possible but that is not a guarantee and sometimes a fetus
comes out in parts.
THE COURT: Do you discuss with them whether or not
there is any fetal pain?
THE WITNESS: I think that's a concern.
My approach has been to say that the cord usually
comes down and severing of the cord means that the fetus
sanguinates.
THE COURT: Do you think that a normal woman patient
understands those words?
THE WITNESS: Well, bleed to death is the analogy on
more lay terms.
Sanguinated. Bloody. The same as embrued. ARMORIAL GOLD HERALDRY DICTIONARY
a commonly used term meaning to bleed out.
"There ARE effective medications and therapies to help correct depression."
EXACTLY. Therefore a greater likelihood of depression should not be used as a justification to terminate for spina bifida.
"The babies were not subjected to any suffering. They had already passed away painlessly and peacefully prior to their deliveries (whether by D&E or L&D)."
Hmmmm...cleo, so the L&D nurses who have to watch 23-weekers whose labors are induced due to Trisomy 21 struggle to live for several hours must be exaggerating when they say those babies suffer.
anon 7:25: There are some highly effective medications for the treatment of major depression, seasonal affective disorder, bipolar disorder, and "intrinsic" dysthymia. The depression that is caused by a lifetime of pain and ridicule is less amenable to treatment. It can be ameliorated with long term drug and psychotherapy, but it is not readily treatable in the same way.
In my experience, the advocates of forced childbirth are also generally the ones who are first to ridicule a child who is in any way different or "defective"--perhaps the real motive of the "pro-life" movement is to make sure that they have a steady supply of victims. (Not, of course, that there aren't people that take the "pro-life" position out of a genuine, if biologically misguided, belief that an embryo is the same thing as a baby or an adult, but that's not who the average forced pregnancy advocate is.)
Wow, Neonatal Doc, bet ya didn't expect all of this hubbub in the comments! Or maybe...you DID? :)
"anonymous 7:32" said, "Hmmmm...cleo, so the L&D nurses who have to watch 23-weekers whose labors are induced due to Trisomy 21 struggle to live for several hours must be exaggerating when they say those babies suffer."
That just does not happen. The goal, once again, is to tx without the baby feeling pain. At 23 weeks, allowing a delivery without first stopping the heart is negligent at best. It's another one of those stories that gets passed around. It's like a pro-life urban legend. Ridiculous.
Fat, I like how you think. It appears that Neonatal Doc enjoys hearing from all viewpoints, which is wise. That being said, I have a feeling that - not unlike dear departed Steve Irwin - he perhaps enjoys "rattling the cage" just a bit in order to evoke a response. I have to agree that it makes for some very interesting reading (at least for a little while), so I don't blame him for that. However, perhaps it's once again time for him as the blog moderator to "pull the plug" (pun intended) and choose to lock down the comment feature. As always, whenever this debate surfaces it's a vicious cycle that goes nowhere and quickly digresses into a "my side, your side" debacle.
[I apologize in advance for the "big words" that some "sides" may not understand.]
Thanks for the comments. There are so many that there is no way I can acknowledge them all. Fat, I never know what kind of comments I'm going to get. I just hope that the commenters will remember that reasonable people can have legitimate disagreements. There's no need for name calling.
As described by Dr. Carhart, the D&E procedure requires the abortionist to use instruments to grasp a portion (such as a foot or hand) of a developed and living fetus and drag the grasped portion out of the uterus into the vagina. Id., at 61. Dr. Carhart uses the traction created by the opening
between the uterus and vagina to dismember the fetus, tear-
ing the grasped portion away from the remainder of the body. Ibid. The traction between the uterus and vagina is essential to the procedure because attempting to abort a fetus without using that traction is described by Dr. Carhart as “pulling the cat’s tail” or “drag[ging] a string across the floor, you’ll just keep dragging it. It’s not until something grabs the other end that you are going to develop traction.”
Id., at 62. The fetus, in many cases, dies just as a human
adult or child would: It bleeds to death as it is torn limb from limb. Id., at 63. The fetus can be alive at the beginning of
the dismemberment process and can survive for a time while
its limbs are being torn off. Dr. Carhart agreed that “[w]hen you pull out a piece of the fetus, let’s say, an arm or a leg and remove that, at the time just prior to removal of the portion of the fetus, . . . the fetus [is] alive.” Id., at 62. Dr. Carhart has observed fetal heartbeat via ultrasound with “extensive parts of the fetus removed,” id., at 64, and testi-fied that mere dismemberment of a limb does not always cause death because he knows of a physician who removed
the arm of a fetus only to have the fetus go on to be born “as a living child with one arm.” Id., at 63. At the con-clusion of a D&E abortion no intact fetus remains. In Dr. Carhart’s words, the abortionist is left with “a tray full of pieces.” Id., at 125.
Ok Cleo. This is direct, indisputable testimony used in the dissent by Justice Kennedy, of the US Supreme Court. They are the judges who we put in place as a people to make the decisions that split us apart. The highest court in the land, well respected and immensely knowledgeable. This man heard these words with his own ears, up front and personal. The abortion Dr he is quoting is on the record in many places as saying exactly what the Justice says he did. No one is refuting it. Furthermore, he is representing himself as the voice of his peers, it was in his name that this case was filed. And in his name that abortion rights were won. He is on YOUR side.
http://a257.g.akamaitech.net/7/257/2422/11mar20021230/www.supremecourtus.gov/opinions/boundvolumes/530bv.pdf
this is a direct link from the United States Supreme Court.
As far as the kinder, gentler methods of killing your babies, I beg to differ with you. In animal ethics, it is well known that KCI injections are painful. This is from their ethics panel:
Potassium Chloride (KCI): KCI induces immediate cardiac arrest without any significant depression of the central nervous system. Hence, it must be used only after the animal is deeply anesthetized.
http://ethics.iit.edu/codes/coe/inst.animal.care.use.committee.html
From a pharmaceutical safety site:
Potassium chloride (KCl) injection that is infused too rapidly or given by direct IV can cause cardiac arrest. There are numerous reports of accidental
deaths that have occurred in hospitals across North America as a result of medication errors where KCl concentrate has been given by direct injection.
http://www.bcpharmacists.org/resources/cpbc/pdf/marchapril2000.pdf#search=%22KCI%20injection%20cardiac%20arrest%22
Cardiac arrest sounds...kind.
Letter from Watson A. Bowes Jr., M.D., to Congressman Charles T. Canady (July 11, 1995)
The claim that anesthesia given to the mother at the beginning of a partial-birth abortion kills the unborn child was disseminated by National Abortion Federation (NAF), a group representing abortion providers. Based on this myth, abortion advocates argue it is misleading to call the procedure a `partial birth' abortion, and that any concerns that the child experiences pain during the procedure are misplaced. A NAF `fact sheet' says:
Anti-abortion groups claim that the fetus is still alive until the very end of the procedure. This is absolutely untrue. Neurological fetal demise is induced, either before the procedure begins or early on [in] the procedure by steps taken to prepare the woman for surgery. (This includes narcotic analgesia, extensive cervical dilation, and rupture of membranes.) Dr. James McMahon calls statements to the contrary preposterous. Dr. Martin Haskell of Ohio agrees with Dr. McMahon's assessment. * * * In the event that there is any possibility of pain perception in later-term fetuses prior to fetal demise, the narcotic analgesia given to the pregnant woman prevents any such sensation.21
Later Abortions: Questions and Answers, National Abortion Federation, July 11, 1995.
Another leading proponent of the `anesthesia myth' is Kate Michelman, president of the
National Abortion Rights Action League. In an interview on `Newsmakers,' in St. Louis on Nov. 2, 1995 Ms. Michelman said:
The fetus--I mean, it is a termination of the fetal life, there's no question about that. And the fetus, is, before the procedure begins, the anesthesia that they give the woman already causes the demise of the fetus.
Dr. Mary Campbell of Planned Parenthood also circulated a `fact sheet' titled, `H.R. 1833, Medical Questions and Answers,' which includes this statement:
Q: When does the fetus die?
A: The fetus dies of an overdose of anesthesia given to the mother intravenously. A dose is calculated for the mother's weight which is 50 to 100 times the weight of the fetus. The mother gets the anesthesia for each insertion of the dilators, twice a day. This induces brain death in a fetus in a matter of minutes. Fetal demise therefore occurs at the beginning of the procedure while the fetus is still in the womb.'
H.R. 1833: Medical Questions and Answers,' Mary Campbell, M.D., Planned Parenthood at 3,4.
However, Dr. Norig Ellison, the president of the American Society of Anesthesiologists says this claim has `absolutely no basis in scientific fact.'24
Dr. David Birnbach, the president-elect of the Society for Obstetric Anesthesia and Perinatology, says it is `crazy' because `anesthesia does not kill an infant if you don't kill the mother.'
The American Medical News reported the controversy in a January 1, 1996 article which stated, `Medical experts contend the claim is scientifically unsound and irresponsible, unnecessarily worrying pregnant women who need anesthesia. But while some are now qualifying their assertion that anesthesia induces fetal death, they are not backing away from it.'
Diane Gianelli, `Anesthesiologists Questions Claims in Abortion Debate,' American Medical News, Jan. 1, 1996
The creation of this anesthesia myth is particularly unconscionable and could pose a threat to the health of mothers. Dr. Ellison expressed this concern, `I am deeply concerned * * * that widespread publicity * * * may cause pregnant women to delay necessary and perhaps life-saving medical procedures, totally unrelated to the birthing process, due to misinformation regarding the effect of anesthetics on the fetus.
He also pointed out that, `Annually more than 50,000 pregnant women receive anesthesia while undergoing necessary, even lifesaving, surgical procedures. If the concept that anesthesia could produce neurologic demise of the fetus were not refuted, pregnant women might refuse to undergo necessary procedures.'
Norig Ellison, M.D., `Testifying Before Congressional Committees,' American Society of Anesthesiologists Newsletter, Jan. 1996
Because the creation of the anesthesia myth might endanger women's lives and health, the House Judiciary Subcommittee on the Constitution held a hearing in the 104th Congress on March 21, 1996 to examine the effect of anesthesia administered to a mother during a partial-birth abortion. At the hearing, Planned Parenthood staff distributed a letter from Dr. Mitchell Creinin, an obstetrician-gynecologist, that stated: `As a physician, I can assure you that there is no such thing as pain to a fetus; plain and simple, pain does not exist to a fetus. Any doctor who states otherwise is flat out lying and twisting medical data.'30
Letter from Mitchell Creinen, M.D., to Congressman Charles T. Canady (March 20, 1996) (on file with the Subcomm. on the Const. of the House Comm. on the Judiciary).
Judiciary Committee Chairman Henry Hyde read this statement to four anesthesiologists, experts in pain management, who were testifying at the hearing. Dr. Norig Ellison, the president of the American Society of Anesthesiologists, responded, `I read that letter over there, and I find it inconceivable that any physician would make a--would attach his name to a letter like that.'31
Dr. David Birnbach, the president of the Society for Obstetric Anesthesia and Perinatology, responded:
Hearing on the Effects of Anesthesia During a Partial-Birth Abortion before the Subcom. on the Const. of the House Comm. on the Judiciary, 104th Congress, 2nd Session (1996)
Having administered anesthesia for fetal surgery, I know that on occasion we need to administer anesthesia directly to the fetus because even at these early ages the fetus moves away from the pain of the stimulation. So I cannot agree at all.
Dr. David Chestnut, chairman of the Department of Anesthesiology at the University of Alabama School of Medicine and the author of a book on Obstetric Anesthesiology, also responded:
I agree with my colleagues and would also note that at the University of California at San Francisco, which is the leading center in the world for performance of fetal surgery, that even though the mother is receiving heavy, deep doses of general anesthesia, those physicians give additional anesthetic drugs directly to the fetus during surgery in order to make certain that the fetus does not experience pain during the procedure.
Dr. Wright, the medical director of Egleston Children's Hospital at Emory University, was the last expert to respond to the letter. She said:
There is no science to substantiate that letter. I believe all of us submitted to you journal articles that have been reviewed by our peers--and I make particular reference to a landmark article in 1987 in The New England Journal, and their phrase was, `there is no doubt about cortical function and the perception of pain in children of this age.
Clearly, anesthesia administered during a partial-birth abortion neither kills the unborn child nor alleviates his or her pain. But despite the widespread circulation and the egregious nature of the falsehood that anesthesia harms unborn children, the National Abortion Federation, the National Abortion Rights Action League and Planned Parenthood, an organization which purports to care for women's health, have taken no steps to correct their information or inform women that anesthesia administered to a mother does not kill her unborn child.
Abortion advocates' statements that the child involved in a partial-birth abortion dies before partial-delivery are clearly inconsistent with prior statements by abortionists who perform the procedure, eyewitness accounts, and the professional judgment of medical specialists.
http://thomas.loc.gov/cgi-bin/cpquery/T?&report=hr024&dbname=105&
TRANSCRIPT HIGHLIGHTS
Planned Parenthood v. Ashcroft
U.S. District Court, Northern District of California
The Honorable Phyllis J. Hamilton, Judge
DAY ONE: Monday, March 29, 2004.
Excerpts from direct examination of Dr. Maureen Paul:
Q. And when you begin the evacuation, is the fetus ever alive?
A. Yes.
Q. How do you know that?
A. Because I do many of my procedures especially at 16 weeks under an ultrasound guidance,
so I will see a heartbeat.
Q. Do you pay attention to that while you are doing the abortion?
A. Not particularly. I just notice sometimes.
~
A. We like to prevent an eventuality of a live birth, and because it seems to make the procedure
move along a little bit easier on the day of the procedure. …We administer the Digoxin with a
needle through the abdominal wall of the woman intro the uterus. We are aiming to get it into
the fetal heart, or at least into the fetal thorax. However, we are not able to do that every time. If
we are not able to do that, then we attempt to put the Diogoxin into the amniotic fluid. And it
seems to work less often when it is just put into the amniotic fluid.
Q. What percentage of time are you successful in getting the Digoxin into the fetal heart?
A. I would say approximately 50 percent.
You know, I can spout facts all night, as Im sure you can. But when it comes right down to it, what I really want to know is this. Are you SURE that your babies dont feel it when they are killed? And are you SURE that it is your decision to make? It may be the goal to see that babies dont feel pain. It may even be your honest to goodness belief that they didnt. But reality says otherwise. The Drs who represent the abortion industry say otherwise. But then, you would have to actually be capable of hearing the truth in order to know that. And hearing the truth means you have to accept that you just dont KNOW for sure. You dont know if your babies felt pain. You dont know what their futures would have been. You dont know. And it eats you guys alive. And it makes you hate us who kept our kids and loved them. The abortion industry has begun to be a little more intellectually honest the past few years. Not like they had a choice. But some of them own this and acknowledge that this is a choice for convenience, and they make no apologies, they dont disguise it in rhetoric that makes it sounds really pretty. They tell the truth. Why cant you guys do the same?
Neonatal Doc, a question for you. Have you ever cared for an infant born after surgery to its mother? What was the outcome of anesthesia for the fetus? What is your experience in this regard? perhaps you can shed some real light on the issue?
From the Termination for medical reasons board at Babycenter:
"My Dr. didn't do the shot because he had suspected heart problems and he most likely wasn't going to survive the delivery."
"After doing research, I found out that some places do inject something in the amino fluid to stop the baby's heart before the D&E. However, where I'm from (a small town) they do not."
From Allnurses.com:
"I have seen tx for med. reasons on viable age infants(>24 wks) and to say the least it is quite distressing. I have also had the mother change her mind after the fact and want EVERYTHING done."
"I have cared for many women undergoing second and third trimester "abortions" (often through induction) that were because of severe health issues. Several of those babies were born breathing and with a heart rate, but we provided comfort care only (wrapped the baby, held it)."
"The mother thought the baby was stillborn and we were not allowed to tell her otherwise or do anything to help the baby who was delivered at 21 weeks. The doctor said. "This child will not survive, no matter what." I held that baby for 3 hours before he died. I hope to never re-live an experience like that."
"In the first hospital, live born aborted fetuses were brought to the NICU for "care" until they died. This consisted of such comfort measures as warmth, holding, and the provision of privacy."
"One Thanksgiving, a patient came in for an abortion for medical reasons at 22 weeks. L&D was swamped that day, and called the NICU to ask us if we would take the live born fetus, as they had no free rooms, or free staff to monitor the baby until it died. We took the baby and placed it in a warm, humidified isolette. The OB came in and had a fit that we were trying to "resuscitate" the baby. He demamded that all care be removed immediately. I told him to do so himself, and to take the baby with him, as I would no longer be responsible for it. He left the NICU with the baby wrapped in a towel. I still don't know where he took the poor child, as there was not an empty room to be found on the unit that night."
"I did have one 22-week infant come out alive. It was a twin. We called a code and did everything we could to save the infant which died shortly after."
"That just does not happen. The goal, once again, is to tx without the baby feeling pain. At 23 weeks, allowing a delivery without first stopping the heart is negligent at best. It's another one of those stories that gets passed around. It's like a pro-life urban legend. Ridiculous"
Oh, you are so wrong about that, it would only take a few minutes to figure out that statement is completely false. I have seen many women on the BC boards say that their baby has lived for a number of hours, perhaps, you are once again not hearing what you are reading.
Abortion for T21 and many other "gray" areas is based on the mothers perception of her life, not the child's.
It is beyond my comprehension why women can not own up to this fact. YOU didn't want to be bothered, at least say it as it is, at least have the courage to say, yep, it was all about ME when you talk about your decision to terminate.. It is selfish, but I have the right to make that decision, that is what I would like to hear.
And really why would any of you want to remember the anniversary of your "heartbreaking choice"? What the heck is all that about?? Why not move on, you made the choice, live with it and stop asking the rest of the world to step into your little cocoon of self pity, when you and you alone put yourself there knowingly and willingly?? Get on with it.
Same old blather, Michelle. When the dose of digoxin instilled into the amniotic fluid is well over five times the amount given to a full grown adult, there is absolutely NO doubt. It painlessly and humanely does what it is supposed to do for a fetus that weighs less than 1 pound. There are ways to verify this as well. I know this first hand. Haven't you yourself stressed that experiencing things in real life is the only way to TRULY know about them? You don't want anyone who doesn't have a child with T21 telling you about that syndrome, do you? Then it's only right that you stop telling others who have experienced the other path how incorrect their own choices, doctors, verification processes, etc. are.
Despite what you like push as "gospel", it's not. Not everything in print applies to everyone. Not every doctor or clinic follows the same protocol as others. I would NEVER have allowed anything to be done until I verified exactly what was what (and that my baby would NOT be directly injected anywhere on the body. This was confirmed with real-time ultrasound being done while the digoxin was instilled and I was allowed to watch so I could be sure that the needle came no where near the baby). Not that I needed it, but the fact that neurological pain receptor maturation doesn't occur until several weeks later was also reassuring. This removes the risk of the fetus at that stage as feeling/processing painful stimuli as anything more than a reflexual movement. None-the-less, it was a non-issue because my baby didn't get stuck, bleed out, struggle in utero or out, or any of the other "nasties" that your choices of articles numerates.
So, yes...much to your apparent dismay (or perhaps disappointment), I repeat - I am VERY certain that my baby didn't suffer for even a split second....which brings us back to the viewpoint that is the complete opposite of yours-- MY choice (and that of the majority of other parents) was to spare my baby any and all pain and suffering that the diagnosis brought with it. Heaven forbid any of these sweet babies who are lovingly (yes, lovingly) set free feel ANY pain; but, in the very rare off chance that they did, at least it was only for seconds at most instead of coming into this world and "living" with whatever anomalies their chromsomes or development happened cause for days, months, years, or decades. To me, living that way would be much worse for them. Yes, some do admit this was a choice for convenience. Doubt me all you want, but that wasn't the case for me at all - and I can only speak for myself, of course. It was completely with the quality of life and the future of my child in mind. Now to be fair, let's turn the tables. There are MANY parents of "exceptionally challenged" kids (with T21 and other issues) who are honest about how difficult it is with health issues, mental issues, social issues, and so on. The people who get so gung-ho on these forums seem to want everyone to see their children as awesome wonders. Frankly, that's fine for the parents to do, but others probably won't (not even for normal kids of other strangers). We wish them the best, but wouldn't want that for our own children. So be honest. The sky isn't always as blue or the grass always as green or the stars always as bright as SOME would try to portray. That's simply not reality for any of us. So, just stop trying to get others to buy into something that is too far fetched. Be happy with your situation. Truly, the majority of the women who choose to tx are very happy as well and have a peace that - unless one has been through it - will never be understood.
Neonatal Doc said it very well, "I just hope that the commenters will remember that reasonable people can have legitimate disagreements. There's no need for name calling."
Reasonable being the operative word. The definition of "reasonable" isn't having to see things the other person's way. This is a legitimate disagreement. That's fine.
Now....C'EST FINIS !
Ummmm...I don't expect anyone to see my kid as an awesome wonder. He may have an extra chromosome but our lives are pretty typical...that is the point.
you have turned this into an issue of me saying my grass is greener. I have not said any such thing. I have not even mentioned my life, my child, or ability for that matter.
What I am saying, which you people seem hellbent on twisting, is this. Ethically, morally, we have NO right to decide the value of another persons life. IF you choose to place a value on your childs life, it is intellectually dishonest of you not to admit that that is for YOUR interests rather than the childs. Suffering is subjective. We, the people living every day with children affected by T21, are telling you over and over and over again that our children do not suffer, WE do not suffer. We have learned that this life is theirs for the taking, not ours to decide the value of. Im not telling you you cannot abort your child. Clearly, the law is on your side. But be honest about it, stop pretending it isnt what it is. Gruesome, barbaric, violent, bloody. You cannot possibly believe that most abortions are done gently with pain relief for the baby. Abortion is a money making proposition. In and out.
The end result is always the death of a baby. THAT is bad enough.
ugh...going to bed. One more thing. You said:
"It painlessly and humanely does what it is supposed to do for a fetus that weighs less than 1 pound. There are ways to verify this as well. I know this first hand. Haven't you yourself stressed that experiencing things in real life is the only way to TRULY know about them? "
I prefer NOT to experience firsthand the results on being overdosed with digoxin, thanks. Im sure you would prefer not to test that theory out, yourself? See, the difference between the theory I espouse and the one you do...? Its death. I can live with my theory, and so can my child. In your scenario, someone pays with their life if you are wrong. Lets just hope you are right, and I am wrong, shall we?
Chelle, you're really winning points for the cause again. Why do you constantly have to upset the apple cart wherever you happen to log in? Enough already.
When I had prenatal testing, quality of life was paramount in our minds.
We would have terminated for trisomy 13 or 18 or anencephaly without hesitation.
Other defects - well, who knows, since we were never put in that position.
I have terminated a pregnancy of my baby boy, as he had spina bifida and hydrocephalus.
Before it happened to me I looked in disgust at people who had terminated pregnancies for whatever reason, I could never do that!
So when at 22 weeks pg I was told of his problems, I knew almost immediately what I would do, we spent another 2 weeks just checking out every possibility.
We already had two healthy children, and we felt that to have a severly disabled sibling would take away so much of our time from them.
We also didn't want our child to have a really poor quality of life, and numerous surgeries.
We did it for our family as a whole, we don't regret it at all, but of course we do feel guilt.
It was the worst time of our lives, and believe me you can't know how you would react until it happens to you.
And I truly hope it never willxx
I have been reading this blog for a LONG time now. In fact, I can just about guarantee you that I have been here longer than any of the DS moms or the termers. It was a link to a post here that started this whole us vs them crap here.
If I have "upset the apple cart" as you say, then hooray for me. This issue has been politicized and rammed under the carpet for too long. Places like baby center and parents place have succeeded in making this issue so unarguable. No one can see anyone elses side, we are not allowed to debate or discuss it.
I think that a rational discussion that doesnt reduce to name-calling and is allowed to get at real feelings is good for all of us. The poster above me posted a real experience, a termination for spina bifida, her guilt, the position she found herself in, and the effects it has had on her. I feel for her, and I can understand that she truly believed this was best for her baby. She is being honest about her experience, and not lashing out at others who made a different choice.
The termers can make this personal, get digs in against our kids and us personally, and hide behind fake names. MOST of us dont do that. You can find out who we are very easily, where we live, our kids names. We have nothing to hide, and we can use our names without shame.
If I am upsetting any apple cart, it is high time it got upset. This issue is too important to leave buried. If you dont like me or how I post, I have a simple remedy for you. Stop following me all over the net, commenting everywhere you can from under your rock, hidden away thinking you hurt me. You dont. This is not about me. YOU make it about me.
I am discussing one of the biggest issues of our time, very personally affecting me. I have personal experience with it. I post on 2 boards related to DS, and one football one. Hardly everywhere. Who are you to tell me enough already? Go crawl back under your anonymous little rock.
I have discovered that the personal attacks come regardless of how and what I post. They come mostly when I am reasoned and making points. The more you attack, the more I know I am on the right track. I am not afraid of you and your hidden friends. There is very little else you could say that you havent already. Bring it on, if you must. I have an opinion, if you dont like it, dont read it. I would say having a comment section invites people to COMMENT. Correct me if Im wrong on that? Or is it that you prefer to have only your side represented? Too bad.
While I despise this ISSUE, I do not feel hatred for the women who do it. I understand the fear, I have lived it. And as long as I am breathing, I will be sharing our story, hoping another baby wont be torn apart, another mother wont be dragged into the abortion machine and told that what she is doing is perfectly fine and even GOOD for her baby.
22% of the comments as of this morning come from you, Michelle. Don't you have more important/relevant things to do than try and control the decisions of families you do now know? Wouldn't caring for your own living children be a more noble cause than all of this anti-abortion rhetoric? Isn't it rude to hijack Neonatal Doc's blog like this?
I hate it that this thread has been hi-jacked by the pro and anti abortion lobbies. The anti's would force people to give birth whatever the problem, whatever the suffering - and do little to make the lives of disabled people better. The pro's imply that it is always reasonable to reject a disability.
I am pro abortion myself. I think it is hard enough to bring up a wanted child, and I believe firmly that the alternative to legal abortion is illegal abortion, not some fantasy of loved children. I am also the mother of a severely disabled young adult. If I had been told she would be brain damaged, I might have had an abortion, out of ignorance and fear. Would I have had an abortion if I could have "seen" the last thiry years? No. She has had a happy life. I fear for her long term future without me, in a world that has little time for those who are different, but no - her life has quality, and as far as I am concerned, value. Others don't see it like that. Yes, it's been hard. I have suffered, so has my husband, so has my second daughter. Is life supposed to be free of suffering? Hardly. Would I have had an abortion if my second child had been damaged? No. Do I insist that other people should make the same choices? Absolutely not. It is a HARD choice, and everyone has to make it for themselves. Anyone who tried to tell me, or my healthy daughter to "save" a disabled or ill foetus because of their principals would get very short shrift from me. I am sad that someone would feel that they couldn't cope with an extra finger, but reluctantly concede them the right. For me, personhood starts at birth, not some blurry point before birth. For the anti's: Do what you think is right. Don't force it on others.
Don't you have more important/relevant things to do than try and control the decisions of families you do now know? Wouldn't caring for your own living children be a more noble cause than all of this anti-abortion rhetoric?
hahahaha. Guess what? I made three posts, in less than an hours time, while any of my children were home with me needing my care. (Those were made at 6:10, 6:16, and 7:02 pm last night. A 52 minute span.) Any other post was made while I was at work and they were at school, or when they were long ago tucked into bed.
Cant argue facts so you argue mundane BS? By the way, what you so eupemistically call rhetoric is really a discussion about the brutal taking of a childs life for no other reason than mental retardation. You people dont like the issue to be discussed, so you hide behind name calling and accusations.
How expected it is that you would throw out the old "who is taking care of your kids while you're online" bit. @@
As for neonatal doc? I suspect he knew exactly what would happen if he posted this. And I suspect it burns your butts that a professional has come right out and said what we have been saying all along. Truth hurts, doesnt it?
I am done for now, not because I care what percentage of these responses is mine, but because one can never tell what percentage of the other posts belongs to WHOM, as you cowards dont leave names, you just hit and run and hide.
The banter of a certain hijacking commenter reminds me of Charlie Brown's teacher, "Wah Wah. WHA WHA WHA WHAAAAAAAAAAAAAAA". It's assumed that everyone hangs on every word, but they don't. It's just incoherent babble (too wordy and too copy-and-paste).
Deal with your own situations and remember that everyone else will deal with their own in the way that they deem best. When will you catch on that you can't force others to agree with you, no matter how many times you repeat yourself? Give yourself (and everyone else) a break already.
Have a great day. :-)
"So long as an opinion is strongly rooted in the feelings, it gains rather than loses in stability by having a preponderating weight of argument against it. For if it were accepted as a result of argumnet, the refutation of the argument might shake the solidity of the conviction; but when it rests solely on feeling, the worse it fares in argumentative contest, the more persuaded its adherents are that their feeling must have some deeper ground, which the arguments do not reach; and while the feeling remains, it is always throwing up fresh intrenchments or argument to repair any breach made in the old"
-John Stuart Mill
It is a WASTE OF TIME to argue this. The best we can do is stock up hospitals and OBs with good information and contact numbers for support groups and get our kids out in society so people can see that they aren't suffering. That's it. It is useless to argue with people who have already terminated. They've made their choice and it's legal. We are never going to convince them that they did the wrong thing and they will never convince us that our children are suffering. Let it go.
"It is useless to argue with people who have already terminated. They've made their choice and it's legal. We are never going to convince them that they did the wrong thing and they will never convince us that our children are suffering. Let it go."
APPLAUSE, ACCOLADES, and AMENS. Well put. Let it go is right. (But what do you wanna bet that a certain 22%-er won't be able to. Any takers? $10 will get you $20). LOL
Ok, abortion is a very polarizing issue and I can't claim innocence in the "but my side is right and the other is all icky immoral people" game (mea culpa). However...
Why does one choice being right for one person automatically mean that the other is wrong for everyone? Can't one person's decision to abort and another's to carry to term both be right FOR THEM?
I remember reading a study (I'll find it if anyone is interested) which compared the long term mental health of women who had abortions versus those who carried unwanted pregnancies to term. The basic outcome was that before 1973, women who carried to term had worse outcomes than those who aborted, after that there was no difference. This suggests to me that neither decision is right for everyone and that having the ability to make that choice makes for better outcomes, whichever choice is made. I'm happy for the people who are happily raising disabled children and hope that the children are really doing as well as they like to believe*. I'm happy for those who have found peace after an abortion. I don't feel the need or right to impose either decision on anyone.
*Please forgive me if I sound skeptical or cynical here. I don't mean to be. As I mentioned earlier, I have a mild neuropsychiatric problem and that makes me cautious about saying blithly that if the parents believe everything is fine with a disabled child then everything is fine. Of course, you know your children, I do not, but it is almost certain that you don't know everything they're going through either. Which is not to say that they are suffering hideously unbeknownst to you, just...my advice is to look carefully and think carefully about how life looks to them.
I don't even know where to start. If my parents had listened to those doctors with that same bad attitude about whether or not a life with disabilities is worth living, I would be DEAD. I still remember my father, some 16 years later, telling how those doctors were saying I'd be mentally retarded owing to hydrocephalus and might be better off if treatment was withheld. Luckily I had a mother who was smart enough to know better and found a physician who decided to risk the necessary surgery. Life with disabilities isn't perfect, but neither is "normal" (and I use that term VERY loosely) life.
For Anonymous 12:38..."saddled with the demands of a cripple"? How self-serving and self-righteous is that? I am appalled that you think anyone raising a child with disabilities is "saddled" with anything. And "because they don't have a life of their own"? The decision to devote your life to the care of your own child is one made whether that child happens to have a disability or not.
Thankfully there are people like Anonymous 9:19 who realize there are people out there with disabilities who consider their lives fulfilling and worthwile. Count me in as part of that group. It's not easy by any means, but it doesn't warrant ending a child's life before it has even seen the light of day.
Michelle's comments are perfectly relevant and she is absolutely not hijacking. It seems logical that comments such as Michelle's would result when discussing abortions of babies with disabilities, which usually are done in the 2nd trimester.
And the choices of women to abort their babies with Down syndrome do have an impact on my child and his future opportunities, these choices are not made in a vacuum.
Sun, your point is well taken--as a result of my son being included with his typical classmates, I have had 2 pregnant mothers since school started choose not to have prenatal testing as a result of seeing that not only is he not suffering, he is thriving.
Shannon
I find it completely appalling and sickening...that other parents of kids with disabilities would condemn Michelle for trying to get accurate and uptodate information out there. Those of you who love to argue (with the 22% poster!!! how very immature) are just burying your heads in your misguided and childish butts.
Talk about GET OVER IT! I think the ones saying to get over it...are the ones who keep after her. Sickening...and enlightening...talk about true colors. Black hearts decrying the lighting of a candle against the darkness of abortion. How sad indeed.
To all the pro-abortionists. Holy smokes, most of you are in D-E-N-I-A-L...or you are in denial about being in denial. Either way, go and get your heads examined, you need a lot of counselling to understand that you are here to justify your decision because of your guilt and in most cases regret. Go get the help you need, then carry on with your life and STOP trying to convince everyone a baby with a disability must be terminated to end the "suffering".
Your actions will bite you in the @ss later in life. Now go find some compassion.
I think NeoNatal Doc summed it up nicely:
"And even if they were terminating the child for the child's sake, to spare him or her from suffering, is that what the child would have wanted? Do children with spina bifida suffer so much that they wish they had never been born? Perhaps it varies from child to child, but I'm guessing the answer is usually no."
I agree that this blog has been hijacked. I am all for information and education, BUT shoving it down peoples throats doesnt change hearts or minds. What it does is puts a label on other people in similar situations. I am not a zealot, I will not force my opinions on you. I will will be as successful about change a pro choicers mind about abortion, as they will be to change mine about life. But I can have a respectful and even handed conversation about it WITHOUT giving the impression that I am the only right one. Please, those of you on the receiving end, do not think that all parents of a child of a disability are like Michelle.
"Please, those of you on the receiving end, do not think that all parents of a child of a disability are like Michelle."
Yes, those of us who chose otherwise do realize that the vast majority of parents of challenged children are not Michelle-esque (or her counterparts with the same so-called philosophy - a.k.a. - agenda); and, for that, we are very, very thankful. Most commenters are articulate, mature, and can post without acting "that way" (even the "termers", as shocking as that may be).
Let's let it go and move forward, shall we?
Holy crap ND... pick a topic like abortion and watch the comment meter go through the roof! Must try that one of these days ;)
Yes, paedsRN, it's a little discouraging. Just when I think I should stop allowing comments because there are too many nasty ones, someone leaves a thoughtful one, which I wouldn't want people to miss.
My personal feeling is that any woman who is pregnant with a child that she does not want for any reason, disability included, should be able to terminate it - up to a certain gestation (which must be a 'safe distance' below the current earliest possible survivable age) and not beyond.
I think if that is combined with the ever-increasing social inclusion of disabled people and honest, up-to-date information about the condition prenatally diagnosed and its potential impact on quality of life (let's revisit that distinction between functional impairment and quality of life again, shall we?), and improved earlier prenatal diagnosis, late abortions of disabled foetuses will probably dwindle.
"Please, those of you on the receiving end, do not think that all parents of a child of a disability are like Michelle."
You think you could make a point without attacking people? Yes people, more than just one person from what I have read on here, are passionate, however, get off your high horse, and keep the personal attacks for high school. Maybe everyone should just walk away from this thread. Seems as though no one is ever going to agree, surprisingly enough, though some posts do seem fabricated. It's funny how people claim parents of children with disabilities might not "have a life of their own???!!!" have you ever considered maybe you don't have a life of your own since attacking people is what makes you feel good and makes your life feel worthy? Hmm, maybe some soul searching is due in this case. All of you, GET OVER YOURSELVES. And NO I am NOT friends with Michelle, I am just sick of the "Let's jump on the bandwagon and attack Michelle cause she brags too much" crap. GOSH
CMS
You know, it's quite ironic that those of you accusing Michelle of hijacking are actually hijacking by personally attacking her. Seriously, we really must be back in 7th grade.
Michelle was among the very first parents of a child with Down syndrome to contact me when I was devastated by the initial diagnosis. Her encouragement gave my entire family HOPE at one of the darkest moments of our lives.
Yes, she is passionate about her beliefs, but it is completely appropriate, when neonataldoc addressed termination for medical reasons, to bring up the issues she raised.
Let's leave the personal attacks out of this.
Shannon
FTR, a pro-choice democrat
Shannon, I agree wholeheartedly that abortion of a child with Ds, because that child has Ds does indeed impact our living children with Ds, how could it not?
It is ironic that people who tx because of this Dx do not see this as a contributing factor in the social isolation that kids with Ds might feel at a certain point in their life. If effects how the person standing next to the person who terminated views my daughter, it effects the medical care she might receive, it effects her sisters and brothers. It may effect my typical daughter and how she will react to the friend who is making a decision for herself. So while those who terminate might feel justified in making decision based on these situations, it does indeed effect my living child.
I feel the same about people who use the word 'retard' and fling it about as if it has no meaning to those who actually have some degree of retardation. At some point my daughter will understand that the world has differing views of her worth to society. This and this alone will rock her world to the very core. Why would anyone want to be a part of that? What did she do to deserve that?
So while I think that women should have a choice, and truly I do, please understand that your decisions do in fact impact my life, the life of my child with Ds, and the life's of her brothers and sisters as well as thelife's of her entire extended family....
That being said, I do not think that our best advocacy's come on the Internet. I don't think that I have ever seen person have a change of heart regarding whether or not to terminate.
The only change of heart that I have witnessed turned out to be a fictitious person, one whom I suspect was a terminator in disguise, AKA tacoke.
Just when I think I should stop allowing comments because there are too many nasty ones, someone leaves a thoughtful one, which I wouldn't want people to miss.
I think you'll probably find there are folks Google-trolling for words and phrases like 'abortion', 'managed care', 'euthanasia' etc. Then folks link it from discussion boards and social bookmarking sites. So any post around hot topics will generate a certain amount of fuss, some of it more civil than others.
I wouldn't close up comments though: this blog generates more useful discussion than most.
Why do all avenues of discussion lead back to Down Syndrome? Down Syndrome is not the only reason people choose to terminate for medical reasons. The reasons people choose to terminate a pregnancy can run the gamot from an extra digit to a missing skull. I agree that it is hard to draw the line and say what is an acceptable condition to terminate for and what isn't. But I think that common sense should prevail at some point. What is the purpose of continuing a pregnancy with a condition that is 100% fatal like anencephaly or triploidy? Does continuing that pregnancy benefit the baby?? I can't see how since the end result is always the same - death. There is no cure for 3 sets of chromosomes or a missing skull and brain. And there are many other conditions out there (other than T-21) which women terminate for where there is no "cure" and there is a high likelihood of severe and long-standing health issues. So why are women who choose to terminate for such conditions villified so much?! Like it or not, in this country we have a choice - and we chose to do what WE felt was best for OUR babies.
I also want to say that I am a bit disappointed (though not surprised) by Neonataldoc's ignorance when it comes to terminating for medical reasons. But then again - if you haven't lived through it yourself you can't possibly understand it. Ignorance is bliss. No hard feelings neonataldoc. ;)
you probably answered that question for yourself, don't you think? I happen to believe in all life being sacred, but I find myself sometimes torn on this issue especially.
You are right, there are lots of things that can be really really awful in a pregnancy. Babies that are genuinely suffering, moms who are truly at risk of losing their lives.
THAT is what the law allowing late term abortion was meant to cover. But it has become this coverall for every inconceivable birth defect, a free pass not to deal with ANYTHING we dont want to. Cleft lip, extra finger, Down syndrome. None of those reasons are truly for the health of the mother. And emotional well-being is important, but IMO not important enough to give up ones life for.
You know, if you have an animal you don't want to keep, it is against the law in most places to just turn it loose on the street, and illegal to kill it.
There is another option for people who do not want to raise babies with DS...adoption. The waiting list is LONG. Yes, it would be hard to live with, but it would be the parents taking the brunt of the pain, they would live with giving up their child. But the child would have their life.
I think maybe the DS issue comes to the top because kids with DS CAN survive and thrive. They do not suffer, for the most part. And birthing them will not harm the mother, usually. It is a hard one to swallow because it would appear that the only reason not to have the baby is because they will have MR. And that says so much about the world. It is kind of the jumping off point between logic and craziness, it becomes eugenics when it is not done to spare the child suffering.
And of course, the debate between the sides is so inflamed because one side believes the child does indeed suffer, while the other side is assuring them they do not. I know firmly how I feel about abortion for DS. I THINK I know how I feel about it for other fatal birth defects, but I also have some gray area that I haven't come to terms with.
I find myself repeatedly thinking, though, that it is not up to US to draw that line in the sand, which disability is "bad enough". For many people, bad enough is MY childs life. And I know that that life is wonderful, despite the trials DS has brought to it.
The line has moved, for me, because now I know and understand what it means, and I have learned that there is beauty in something I used to fear.
To the parent whose child has T13, or T18, that line may be different. It is just so subjective, and that tells me we shouldn't be drawing the line at all.
It is a hard issue, and it really needs to be talked about if it is ever going to be solved. There are such polarized views, and so much misinformation. I think the only way this issue will ever be resolved is for good people to discuss it, respectfully, openly, and for the people whose jobs are to know about prenatal human beings from every aspect to tell us unequivocally what happens in abortion and what the truth is.
Roe vs Wade was predicated on when life begins. We have learned SO much since then, we literally have a window into the world now. But we are still taking human lives based on old information, when we all know that we ARE taking life. At the very least, we need to rethink how far we are willing to go into denial to convince ourselves that abortion, especially in the late term, does not kill a child. And exactly how that child dies, from a scientific point of view, and how much he suffers. We do it for condemned people. It is the very least we can do for our children, and ourselves.
not enough caffeine, apparently. CONceivable, not INconceivable.
"Why do all avenues of discussion lead back to Down Syndrome?"
Zip, or whichever clone you have doing your dirty work this week, I am sure you know the answer to your own question.
But I still feel the need to refresh your memory in case it has failed.
It is because of the same pathetic argument that continually comes up over and over. That children with DS suffer. The decision that you made was not to save your baby from a life of suffering, it was to save YOU from a life of what you thought YOU would suffer as a result of CTT. Quite selfish really.
Don't make this about the kids, this is about you and what you were afraid of. Not so much about what you could handle, or what is right for you and your family. It is a fear based knee jerk reaction. That is all.
I guess my question all along to all the pro-abortionists is: If your here to be supportive to people that are living with the same decision as you, then why must you continually be harassing those of us that have chosen differently?
Stop lurking on living child boards, and stick to your dreary, sad, grief stricken support boards where you pat eachother on the back for your outstanding accomplishments of getting a few hours sleep in a week, or making it through another year to your dead babies anniversary.
Just stop the madness! You are never going to convince a single parent that their living child is suffering or that they made the wrong decision.
P.S. I sleep very well every night and I look forward to my child's BIRTHday.
Stop lurking on living child boards, and stick to your dreary, sad, grief stricken support boards where you pat eachother on the back for your outstanding accomplishments of getting a few hours sleep in a week, or making it through another year to your dead babies anniversary.
What an utterly horrid thing to say. There's a difference between advocating your position and being unbelievably cruel. Fine, you disagree with their choice, you don't have to be completely awful about it.
Or maybe you do. At least it shows what you really think of women who've made this decision. Your cruelty is astonishing and your lack of empathy amazing.
I find it interesting that a doctor would speak for other people by telling the the world via an internet blog what people who make this decision are "actually" thinking.
I did not want my child to suffer in the way he would have suffered. Yes, I do believe that severe MR is a legitimate reason; that's what he was facing as well as horrendous physical defects. After watching my severely handicapped cousin grunt and rock his way through a short and unhappy life, and his parents and uncles (all ministers!)agree upon his death, that God had released him to be a free soul, then I did not wish that kind of life for my son. After much prayer and discussion, we chose to terminate the pregnancy. And I believe that his spirit is in a much better place - for him - now.
That's why I do not grieve my decision. I do grieve that he had to be so sick. But I do not regret my decision for one second.
OK - one more time for the so-called "lifers". This is NOT about YOU or YOUR CHILD. You have what you have. Maybe some of you knew of your child's issues ahead of time; many did not. You roll with the punches that are thrown. Do your best. Love your kids. Provide every therapy and intervention and inclusion available and possible. Handle your realities and let others handle theirs.
To the commenter who stated "Your cruelty is astonishing and your lack of empathy amazing."
Right on. Her true colors shine through all of her cracks. She may claim to be so in tune with the fruits of the spirit and holier than thou rhetoric, but she's always the first one to break her own rules. That reveals a lot.
Her ignorance becomes more and more obvious with each post. She hasn't a clue that choosing to tx is anything but a knee-jerk reaction. Selfish? Couldn't be further from the truth, no matter how she tries to push that viewpoint. Pro-abortionists? That one actually made me LOL. She is so far off the mark, it's almost funny. Let her keep preaching to her choir. We all know the truth, and that's what matters.
"We all know the truth, and that's what matters."
I think the real reason that you are so upset with people terminating for Down Syndrome is because that shrinks the potential pool of suiters for your children with DS.
"Nobody knew the answer to my colleague's question at the conference. Fortunately, the fetus in question had no birth defects."
It would be pretty easy for doctors in this field to find out a reason, wouldn't it? Try ASKING. And LISTEN to the answers you get, instead of speculating on what the reasons "might be."
"At least it shows what you really think of women who've made this decision. Your cruelty is astonishing and your lack of empathy amazing."
I used to feel sorry for them. That is until these same people started harrassing parents with children with DS inexcusably. Til they started the name calling and stalking. Til they started spewing lies about our children's quality of life, and on and on.
You have no idea what these people will stoop to, to try and break us down.
And should I be the "better" person and not stoop to their level?..probably, but if I do that, they think that they have "gotten" to me.
They will never get to me, and they need to understand that. I will fight the fight however I choose and I need not take words from you about whether I have empathy to change my mind about what I say online. For all I know, you are a tx'er pretending to be on the other side of the fence to add more controversy. Because that is the kind of thing they do.
"...pretending to be on the other side of the fence to add more controversy. Because that is the kind of thing they do."
Uh huh. Who has ever done such a thing? I can only think of one person who has pretended to be someone "on the other side." One cruel person who is on the attack. The last thing a person who has terminated a pregnnacy after a DS diagnosis wants is to interact in any way with a mom like you. No one is stalking you. You're the paranoid one on the warpath.
See? Your $10 bet would've gotten you $20. She just can't follow through on her word. Shocker, isn't it?
I just love it. Michelle (aka anonymous in most of these comments) claims that those who have chosen to tx stalk parents of ds children? Then why is we have been forced into private groups with strict admission policies to stay away from people like you? Yet you still join claiming to have terminated your ds pregnancy and attempt to rile people up by telling horrid stories of what living with ds is like? And even then no one said one negative word about the children or their mothers.
We all know the real reason for your guilt and it has nothing to do with us. You just continue to use us as your excuse. All life is sacred, as long as it does not interfere with yours, right?
You have issues. If you spent a fraction of the time you spend on the computer in therapy, you would be a much happier person.
I have txed for medical reasons and take part on several online boards which are there for women who have gone through this sorrowful experience.
I can tell you I have NEVER, EVER heard even ONE person belittle, make fun of, ridicule, or say anything negative about a person who has any birth defect, including DS.
There may be a problem with some of the parents of children with special needs who are on the rampage and attack "us" for our decision. But never the kids, never.
I came here to see if this thread had progressed, only to find myself being bashed as though *I* were the one saying ANY of this crap. I left Friday night for Western maine to the mintains, for the wedding of my niece. I have plenty of "proof" that this is a fact, although I am pretty sure you all would not believe it anyway. HOWEVER, Neonatal Doc can surely check the IPs of these posts and lend his opinion. I have NOT posted as anon here, as I have repeatedly said, I stand behind what I post with my name. I returned to my home at about 4:30 PM, today is Sunday. I stayed in a cabin in the woods with no internet connection, not to mention I was plenty busy with nieces and nephews, aunts and uncles, my own parents, my own kids, a dog, and traveling to and from the wedding. You people who believe I am the devil incarnate need to grow some lives. THIS WAS NOT ME. PERIOD. I would like to see ND post to this, to try to stop some of this bull, and say this is the truth.
Then why is we have been forced into private groups with strict admission policies to stay away from people like you?
Hmm...I'll take a bet it is because you all have told your friends and family that you "lost" your baby. Hmmm...I lose my car keys, and find them...
I lost my camera once...but it reappeared. I lose things all the time. Either I or someone else FINDS THEM!!
Who "found" your baby. You live lies...that is why you hide.
You have no way of knowing who posted these anonymous posts but like to cast stones.
silly really
anyone can see it is just sour grapes
http://ciarrasmom.blogspot.com/2006/09/weddings-families-and-old-friends.html
In case anyone would like MORE proof of where I was this weekend, rather than posting on this board, just ask. ND doc COULD, if he chooses, make it clear who posted these, and it was NOT me. Perhaps if you all even give a rats ass, you will see the truth here and shut UP. Or perhaps it is easier to villify me than to see that there are others out there with agendas who you need to fear a hellofalot more than ME. For the record, one more time...I did NOT post anything this weekend, I was not HERE, I was 41/2 hours away where there is no computer, not even a phone, and cell phone reception is rare. Nice place, really. Now bite me.
"I'll take a bet it is because you all have told your friends and family that you "lost" your baby."
No. It's because people like YOU refuse to see things from any other viewpoint than YOUR OWN. It's because people like YOU make judgement calls on others when you know very well that you shouldn't. It's because people like YOU try to paint YOUR realities as something that everyone else should want and can't accept the fact that others don't see it as something for which to hope.
The main reason that most don't opt to "adopot out" their children with T21 and the other issues is because that would not spare them a "life" with that diagnosis. Handing them off to other caregivers is not going to change their diagnoses. Like it or not, THAT is fact. Also, who knows what kind of adoptive or foster family will get ahold of them? That can be a fate much worse than death (and then end up in death anyway, right?).
"Bite me"? Good one, Michelle. Wow. ;-)
You want to know why we continue to fight the stereotypes? Read on.....
"It's because people like YOU refuse to see things from any other viewpoint than YOUR OWN. It's because people like YOU make judgement calls on others when you know very well that you shouldn't. It's because people like YOU try to paint YOUR realities as something that everyone else should want and can't accept" and that is the truth of the matter, thanks for saying it so eloquently..
By the way, I'm one of the errant posters who happens not to be Michelle..... HA HA
Betcha can't guess who I am!!!!!
So...you deny that you have lied to friends and family? I can go and view any number of posts from those who have terminated who all say the same thing.
Today was my first day back at work since I "LOST" my baby...we havent' told anyone the whole story, just that we "lost" our daughter/son...it's been 3 1/2 weeks since I "lost" the baby and already blah blah blah...
don't blame those of us who chose to have faith and believe in our children that you made a decision you can't even speak of aloud but instead choose to pretty up with lies! That is why you hide. Misery LOVES company...you guys must be euphoric!!
Blame? Oh come on. Nobody on this "side" is looking to blame anyone else for their own decisions and choices (many on "your" side didn't even know ahead of time, so that's a moot point). "Your" camp is the one that plays the blame game time and time again. We're not out to paint negative impressions or opinions of all of "you" or "your" kids (unlike what "you" keep trying to state), but all of "you" seem to think you have free license to do so with regard to others who don't agree with your views or chose to let their babies go. Realize that most who did opt to tx thought they never would until faced with the stark realities that their babies' diagnoses meant.
Okay, let's do this one more time (now pay VERY CLOSE attention) -GET A CLUE. Most (yes, MOST) others do NOT view certain diagnoses (including T21) as something special or magical or for which to be hoped. T21 is a birth defect that causes mental retardation at the very "least" and a whole host of other issues as well (true, some individuals are affected more than others but the problems are still very much real). This is documented fact, not fabrication. Whether "you" like it or not and whether "you" can accept it or not, this is what it is. The majority of parents feel that such problems are not what they wish their beloved children to endure. Even many of mom's of kids with T21 (the ones that aren't trying to force their situations and viewpoints on others), admit that it's often a very rough road for their kids. They don't like to see them go through all of the trials that go hand-in-hand with this trisomy (medical, mental, social). Of course they love their kids just like all of us; but, they don't try to make it out to be something awesome that it's not. Also, the childhood and teenage years aren't the biggest worries because those years hold only a portion of the troubles. It's what happens beyond that. Look at the facts, documented by medical studies and real life experiences. There are those with relatives (aunts, uncles, sisters, brothers) who have T21 and other problems that have chosen to NOT have their own child experience that same path (when prenatal testing reveals the particular defect). So, it's definitely not about ignorance or trying to hide behind euphemisms. These people have experienced first hand what their loved ones have endured and it's for that very reason that they don't want to see their OWN children do the same. That's very honest and revealing.
"You" must accept the fact that we have to agree to disagree. Those who have terminated did so with much thought and love. You'll never believe that, though. ....just like we'll never believe that things are so wonderful with T21, either.
Now get off of your high horses and realize that 90%+ of the wonderful parents in this world will still decide to let their babies go when given the POOR PRENATAL diagnosis of T21 and others.
Deal with your realities. We'll deal with ours...and we're very much at peace that our babies didn't have to go through any of what their birth defects would have guaranteed.
If this is all done in the name of LOVE...why do you lie then? Why not say to your friends and family...we LOVED our child so much that because we couldnt' get a GUARANTEE about his or her health at any given stage of life...we chose to end his/her life!
Ahh...anymore love like that and humans will cease to be.
You lie because somewhere, deep inside, you all know the real reasons. FEAR. of the UNKNOWN. Very few children with Down syndrome have guaranteed health issues so great that the child would suffer.
If all would stop painting horrid pictures of what you THINK our lives are like...maybe so many women wouldnt' seek to "love" thier child to death!
"You lie because somewhere, deep inside, you all know the real reasons."
No, not everyone lies about their choices. I've read stories from many who are very open about it (and not just on pro-choice forums like you're thinking). I can also see why some choose to NOT divulge all of the details of their losses. It's because of certain groups of people just like YOU who pass judgement and name call in the name of choosing life at all costs. It's obviously the opinion of the majority that the costs (and I'm talking emotional and quality-of-life costs, not the monetary ones) are far too high when it comes to spending an individual's entire lifetime dealing with mental retardation and all of the other problems. It's very personal and isn't anyone else's business.
If you choose to terminate because of bad prenatal test results, that's understandable. If you choose to continue a pregnancy in spite of bad prenatal test results, that's understandable as well. If you didn't have a clue of your child's diagnosis ahead of time, then you have no idea what goes into this process and no right to tell others how they should think or feel or choose. You may THINK you know what you would decide to do, but you never really know for sure until faced with it. Accept it or not, it's the truth.
You may THINK you know what you would decide to do, but you never really know for sure until faced with it.
Not only faced it...stared it down and WON! I have the most precious gift imaginable...and I thank GOD every single day for giving him to me. I can't for one second think that there is any circumstance that I know better than GOD.
There are a great many women who don't have a prenatal diagnosis because they make a very informed decision not to have prenatal testing. They are well aware of the consequences of that choice, and decide ahead of time that regardless of the test results that they would continue their pg. Therefore, "not having a clue" about the diagnosis prenatally does not equal not knowing what you would do with a poor prenatal diagnosis.
And personally as the mother of a child with T21, in a future pg. I would once again choose not to have prenatal testing, despite being at an increased risk for a recurrence.
We can go around and around about this until we’re blue in the face. But it won’t change anything. I won’t be able to change your mind and you won’t be able to change my mind. The truth of the matter is that abortion (for whatever reason) is a legal option in this country. If you don’t like that, then you need to talk to your Congress members. Because only those who make the laws (or interpret them, as in the courts) can change them.
For those of you who say that you think abortion is acceptable in the case of more severe birth defects (such as anencephaly, T-18, T-13, Triploidy, etc.) you need to keep in mind that the right of choice is a slippery slope. If you take away the rights of some women to choose, you are also taking away the rights of many other women. If you want abortion to be illegal past a certain point in gestation, that will apply to ALL pregnancies and not just those for which you think it’s unacceptable to terminate.
One last thing – the decision whether or not to tell other people about one’s termination is a very personal and painful one. Those of us who have terminated for medical reasons know full well that there is a significant portion of the population which doesn’t agree with our decision. When you lose someone close to you (be it a child, parent, sibling, etc.) it is undeniably painful at times to keep talking about it over and over again. Sometimes it’s easier just to say “I’d rather not talk about it.” It’s not shame or guilt that keeps us from telling our story, but the fear of an ignorant and judgmental response. Because as it’s been said before – until you’ve actually been faced with such a situation you have NO idea what you would choose. I’ve seen countless examples where people say “I would never terminate” but when the reality of a poor prenatal diagnosis is no longer a hypothetical many of them eventually do. And even if you have faced one poor prenatal diagnosis and decided to carry to term, there are thousands of other birth defects and abnormalities which can appear in a subsequent pregnancy. Just because you chose to ctt with one diagnosis you can’t say with 100% certainty that you would with a different diagnosis. You don't know because you haven't faced it. Another reason that some people choose not to tell the entire truth about how their pregnancy ended is that some people are just not as strong emotionally as others. Some people can’t handle the questioning looks, the curious glances, the whispers. And some can. I personally tell everyone exactly what happened with my baby, and I have from day one. I’m not ashamed to say that I aborted my baby because it was the best decision for EVERYONE in my family. And yes, I am a member of my family so I guess that I did do it for myself too. Does that make me selfish? Maybe. But I’m okay with that. Why can’t anyone else be okay that I am okay with that??!!
Just because you chose to ctt with one diagnosis you can’t say with 100% certainty that you would with a different diagnosis. You don't know because you haven't faced it.
I have faced that and can say that I know without a doubt. I had another child after my son with DS was born. I, like others, made the decision that I wouldn't have any testing other than level 3 U/S.
I do appreciate your candor and respect that you are OK with your decision. But the fact remains that while most of the other mothers who chose to abort their babies call it "losing, letting them go, etc..." it really doesn't portray the accurate information. It sounds gentler, but the result is the same.
And regarding the previous post stating that the end result is all the same----death???
Well, by that rule, we all ought to just quit procreating. After all, we are all just on our way out aren't we?
"But I’m okay with that. Why can’t anyone else be okay that I am okay with that??!!"
Very true. If guilt, remorse and sorrow are what others wish upon those who tx....well, sorry to disappoint. That's just NOT going to happen in the way that is assumed and hoped by the "lifers". In our 'camp', misery doesn't love company. None of the "termers" would wish such chromosomal or developmental problems on another child or family. The big thing that is regrettable is that our babies happened to be the ones who had the sad 'flukes' in their cell division. That's nature, though. It happens more often than anyone realizes. Thankfully, we now have the option to lovingly intervene on our babies' behalf. Unlike what is incorrectly stated repeatedly, making this choice is NOT assuming the role of a 'higher power' - at least not anymore than choosing to allow a life-preserving heart or bowel surgery right after birth. If we mere mortals are to allow 'what is to be' to happen, then why opt for such medical heroics? Isn't that taking things into one's own hands, too? Yes, it is.
A very sad and scary question is 'What type of person would ever wish for another to feel badly about their own personal and difficult choice?' I can't even begin to imagine. That in and of itself is VERY revealing about the hearts, souls and psyches of such persons. I don't feel anger toward them. Instead, I feel very sorry for them.
"I have faced that and can say that I know without a doubt. I had another child after my son with DS was born. I, like others, made the decision that I wouldn't have any testing other than level 3 U/S."
Are you telling me that you have faced every poor prenatal diagnosis out there?? Maybe you have faced one (T-21) but certainly not all. And even if you *think* that you might ctt despite a poor prognosis for your unborn baby - would a complication such as a threat to your own life change your mind? What if carrying a baby to term meant that there was a very good likelihood that you would hemmorage and die. Would you ctt anyway? Quite possibly leaving your living kids without a mother? Would you consider termination then? Would your faith in God be enough for you to turn a blind eye to the facts in front of you that you could very likely die if you carry to term?
Michelle - why do you think anyone gives a rat's where you were this weekend? (BTW - IPs can be borrowed, you know that, right?)
Are you telling me that you have faced every poor prenatal diagnosis out there?? Maybe you have faced one (T-21) but certainly not all. And even if you *think* that you might ctt despite a poor prognosis for your unborn baby - would a complication such as a threat to your own life change your mind? What if carrying a baby to term meant that there was a very good likelihood that you would hemmorage and die. Would you ctt anyway?
Hmm...guess it is my turn to speak slowly so you can understand...
No...I haven't face every PPD out there. The point I made was I CHOSE not to know. It simply didn't matter to me to KNOW! I wasn't going to DO anything other than deliver in a well prepared setting (which I did anyway). Many moms choose this route.
and as for would I CTT knowing I may die...hmmm...I really don't understand why the baby would have to DIE! Why not carry that baby to 34-36 weeks when it would have a beautiful chance at life. Why does the baby have to be destroyed in any case. Nobody seems to be able to explain that.
Would you call the mother who ran into a burning building to save her youngest child a selfish person for leaving the other children outside without a mom? Lots of questions...no real answers.
You are right on one thing. We will never see eye to eye on this. And my intent isnt' to make you into some sort of monster...it is simply to say...my child isnt' suffering. Mental retardation doesn't cause suffering in the person having it. The whole point of this blog entry here was to say..."who exactly gets put out of their misery...the baby (who would probably choose to LIVE or why would they stuggle and try to get away from the needle?) or the parents...who only choose another hell.
I originally came here because some of you claim to "know" who is posting certain posts...that person/persons are incredibly far off base.
For the tunnel-visioned anti-choicers, this quote really says it all:
"Methinks thou dost protest too much".
Yep....exactly.
"I really don't understand why the baby would have to DIE! Why not carry that baby to 34-36 weeks when it would have a beautiful chance at life."
Because some conditions ARE fatal. Often the only reason the baby is still existing is because of the life support a mother provides. While some consider this a blessing, others feel it is torture. To wake up every morning and wait to see if this is the day your baby does not kick. Going in for bi-weekly ultrasounds to see if your baby's heart is still beating. Waling around with your big swollen belly trying to go on like everything is fine, when inside your whole world is falling apart. Answering the questions from well meaning strangers without busting into tears. This can be torture to both the mother and the family. Many women cannot handle an existance like that. They make the choice to end the wait, and let the child go sooner than later. I see this as no different than forcing a family member to remain on life support when there is no hope for recovery.
You can call it destroying a life, but many of us see it as setting their spirit free.
Love your children. Love them with all your hearts. But remember that you do not know what someone else can handle, and you have no right to judge those who feel differently than you do.
This is so ridiculous, Michelle is not posting here under anonymous. Why do you have to continue to beat her up all the time? Frankly you give her way to much credit!
hahaha you losers. You scared of the dark, too? Seriously, grow up just a little. How am *I* going to stalk you? Oh wait...I MIGHT be Neonatal Doc myself, huh? Hmmmmm....maybe I created this identity to draw you guys out, get you to post, so I can see your IPs and STALK you. OH NOOOOOOOOOO.
By the way, Im ALSO Dr Seuss, The Tasmanian Devil, Bigfoot, The Loch Ness monster, and various other Big Scary Things. But dont be afraid. Im too big and scary to get into your itty bitty little computers. Besides, its MUCH more fun just playing around here in your minds.
Freakin weirdoes. Maybe I ought to start feeling special? I mean, I was gone for days and the topic was STILL all about me. Bored much? Im feelin the love...
BOO!!
PS If you look REAL closely, when you write a reply to bash me further, because you still cant admit your f'd up theories of BLAME MICHELLE FOR EVERYTHING are wrong? Theres this funny little spot that lets you sign in using...gasp...a REAL name. Ive found it, somehow, despite being SO dumb. Never too busy trolling the internet for trouble to sign my name. No siree.
"Frankly you give her way to much credit!"
No, not true. We don't have to. She does that herself (especially when she deems herself the all-knowing judge and jury of others' personal lives). Maybe it's just too difficult for some to introspect, so they look to condemn others. Wow, that is so wrong, not to mention really sad. :(
You know, just as you would like others to be respectful of your decisions, I would hope that you could offer the same, this includes Michelle.
I consider Michelle a friend, she is respectful of my views and I of hers. We differ in some fundamental ways, she is pro-life, I am pro-choice. I know she respects my views on that subject, truly I know she does, she may not agree with them, but she does respect my right to have them. We differ politically, and that's okay, really it is.
But your "side" has made such a mockery of her views and it is my opinion that in your eyes Michelle has morphed into some villainous persona that has you on edge constantly.
This is what I think, be it true or false. It is what I "see" when I read these posts.
People who are "respectful" of others don't get banned from message boards, including message boards specifically for parents of kids with DS. And people who are "respectful" don't create false identities complete with a 100% fabricated story about a termination for DS, and use that false identity on more than one message board in order to what - entertain herself?? Is that being repectful? No, I'm not using my real name here. Because there are some crazy people out there in cyberworld who dream about stalking people they read about on the internet. And I wouldn't put it past certain people to do so.
"and as for would I CTT knowing I may die...hmmm...I really don't understand why the baby would have to DIE! Why not carry that baby to 34-36 weeks when it would have a beautiful chance at life. Why does the baby have to be destroyed in any case. Nobody seems to be able to explain that."
Well I'm not doctor but I can think of a few reasons why it would be in the mother's best interest (for her own health) to terminate a pregnancy before the point of viability for the fetus - Cardiomyopathy in the mother, cancer requiring immediate chemotherapy, an ectopic pregnancy, to name just a few. I'm sure there are many more reasons out there, but those three come to mind.
Sometimes people are not respectful and get banned from message boards, no question about it, that is a two way street, some people from both "sides" have been banned from message boards.
Respectful people do not make false identities, again a two way street, lets talk TACOKE, remember her, fake, fake, fake.
And yes I do believe there are crazy people on the Internet, that do in fact stalk people through e-mail or various other means. I believe that Michelle has been victimized in this manner.
"Tender chunks of ..." not so respectful, IMHO
My point while being somewhat diluted here, is that respect is grown from all of our homes. We can only truly police ourselves. If what we want is respect, we must be willing to present our ideas in a respectful manner, doesn't mean that we have to agree....
I "see" your side placing an enormous amount of blame on one woman, often wrongly.....
"Michelle has morphed into some villainous persona that has you on edge constantly. "
I think her last post speaks for itself...
Yes, and no one who has terminated would ever create a false identity...especially not a sibling of someone with Down syndrome who chooses to terminate for it.
Yes, and no one who has terminated would ever create a false identity...especially not a sibling of someone with Down syndrome who chooses to terminate for it.
Agree to disagree already, will you all? This is becoming totally redundant.
Both "sides" have made their points and will never agree with the other.
ENOUGH ALREADY !
I just have to say that this is not solely about Michelle, or solely about Bridgett O'reily. It is about us, about you and about me. It about all of us becoming so wrapped up in our own thought process that we create situations like this one.
These on-line meetings we have seem to me to be somewhat of a debacle, a type of freakish side-show, a spectator sport of some weird kind.
I think we have to stop doing this to each other. I'd like to think that we can at the very least not contribute to some one's anguish.
Can you imagine what we are doing to the mothers who are still in a deciding stage?
To my fellow Ds moms, next time you wrap that child in your arms and get the best whole body hug in the world, try to remember that there are people out there that are grieving, they are missing their child, how could they not?
My heart feels so heavy sometimes for those women.
To the women who have terminated, if you might, please, at least sometimes, entertain the thought that our children do not appear to be suffering to us, we love them with all of our beings, we are surprised by all that they bring to our lives....
But most importantly, I hope that we can do all that we can individually, to stop the inflicting the pain. Stop this thing we have created....
Here's what confuses me: parents of kids with chromosome problems such as Down Syndrome say that no one who isn't in their situation can judge what it's like. Their kids are not suffering - and they should know, since it's their kid. Which I'm happy to accept. You're the parent, you know your child.
On the other hand, many of these same people seem to be perfectly willing to assume motivations, beliefs, morals, etc. on behalf of the women who've terminated for medical reasons. How does that work? If you're not in that situation - either you chose to continue to term after a poor or fatal fetal diagnosis, or you didn't have a poor or fatal prenatal diagnosis - how can you make judgements or assumptions about people who decided to terminate? Don't they know best what their motivations, reasons, morals, and feelings are? Why do people who have never (and alledgedly would never) made that choice get to tell them what they think and feel?
I can't speak for all - but most of us have even stated that we respect a woman's right to choose. It becomes a problem when some of those who have terminated constantly berate our children (whether it'd be to justify their own decision to themselves or to others). The problem continues on sites like this if incorrect information is posted. This is why we (parents of children who have DS) have to be vigilant in coming on and setting the record straight. Again, it is a woman's right to choose (at least currently). All we ask is that you allow others facing their decision to make an informed choice.
"All we ask is that you allow others facing their decision to make an informed choice."
That's fine as long as informed = realistic. Often, that's just not the case when matters of the heart take over - which completely blurs fact and objectivity.
My hunch is that most women who decide to term do so after reading as much factual data as possible - more so than "tit-for-tat" blogs such as this one (thankfully). They also speak with specialists who understand what their child's diagnosis is all about, as well as interacting with specialized groups for whichever impairment is relavent. Based upon all of that, they make their own decision. It doesn't mean that they feel everyone else should do the same, or that children who have the same issues are "rejects" and shouldn't be tolerated. It just means that, based upon their own personal vantage point, they do not feel that the anomaly is something they want their child to have to experience. Completely their choice. Also a matter of the heart that they will defend just as much as others with conflicting views. That is how it has always been and always will be. Bickering about it won't change a thing.
Sorry to disagree again...but in the case of DS...I met only ONE "specialist" who knew much beyond what they read in medical school. The "specialists" I spoke to (in a VERY highly regarded Womens Hospital in a Metropolitan area) all painted gloom and doom pictures.
I went with my heart..as I always will, and have proven every single one of the "specialists" wrong
Everyone is in agreement...experience is the best teacher. And nobody but a parent of a child with any given disability is qualified to give a truthful answer.
Some of you see that as being one sided info...sorry...
OOops...must clarify. I mean a parent LIVING with a child with a certain disability.
[From Sports Illustrated, By Rick Reilly]
I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.
But compared with Dick Hoyt, I suck.
Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.
Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right?
And what has Rick done for his father? Not much--except save his life.
This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.
"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''
But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''
"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked out, ``Dad, I want To do that.''
Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''
That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!''
And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly Shape that he and Rick were ready to try the 1979 Boston Marathon.
``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.
Then somebody said, ``Hey, Dick, why not a triathlon?''
How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon? Still, Dick Tried.
Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?
Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.
This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man in a wheelchair at the Time.
``No question about it,'' Rick types. ``My dad is the Father of the Century.''
And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.
Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.
That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.
``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''
http://www.youtube.com/watch?v=ryCTIigaloQ
YOU can only imagine. No specialist on earth can tell you about this.
No - not necessarily "one sided", but definitely clouded with emotion and the protective nature of a parent. What you see isn't necessarily what others see. The life that you consider to be "happy" or "not suffering" is seen quite differently by most others who feel that the particular diagnosis they are given is an unacceptable proposition for THEIR babies to endure. Accept it or not, it's all a matter of subjective perspective. Neither is more right or wrong than the other. It's so very PERSONAL.
I agree that some doctors are better than others at painting realistic, current, and objective pictures than others. That's why most parents do NOT make a snap decision based upon the opinion of ONE such person. They research ALL avenues and get the whole picture before choosing what to do. No, they don't live your reality 24/7; but, they do learn enough to realize that they don't want to, either. That doesn't mean they fault you for the life you have, so you shouldn't make it a personal slight against you or your child with T21 (or whatever other diagnosis it may be). Likewise, they should not be judged, faulted, or condemned for their difficult decisions, either. As has been stated many times, experience is the best teacher and that goes BOTH ways.
Bottom line - it boils down to respecting each others' choices and agreeing to disagree.
But these "specialists" (and I really believe that the PARENTS should be called the specialist) only see these children when they need medical care. They don't dine in the evenings with these kids, they dont' attend field trips with their classrooms, or sing them to sleep at night. They see the rough times...the times the child is sick. How could 100 "specialists" base their "knowlege" on these events only.
Are you only the sum of the rough times in your life?
It's like....you won a car in a sweepstakes. But before you pick it up at the dealer...several mechanics tell you of all the trouble they've seen in these cars...do you pick up the car anyway and accept the gift? Or do you call them up and say...give it to someone else, I don't want to risk getting attached to a car that may need mechanical service often.
Great point, Cindy! When do you see your child's Dr. or ped (other than 1/yr. well-visits)? Our ped told me she sees my son far less than most of her typical patients!
I just wanted to take a minute to respond to anon 4:08 asking how people might make assumptions.
I will only speak for myself here. I am a person who considers myself pro-choice. There are reasons that I would terminate a pregnancy. I always thought that I would have terminated a pregnancy for Ds, but found that I did not.
Having been in that position I can tell you that there was a great deal of research and soul searching that goes into the decision itself. But for me, it wasn't a good decision. I want all of my children to accept diversity wholly. It felt like making the decision to terminate that pregnancy would have been equivalent to endorsing one of the last "accepted" avenues of discrimination today.
I believe that this discrimination of the disabled is based upon fear. Fear that the child of your dreams will not be perfect. Fear that your life will be more difficult in caring for this child. Fear that your child will not be successful, in today's world I believe that we equate success with happiness.
I knew that I couldn't ever look at a person who had Ds and feel that I had made a good decision if I had decided to terminate.
I find myself conflicted today by the my desire to uphold my life-long conviction of pro-choice with my desire to be an effective advocate for my child. To me, I hope that it is possible to be pro-choice by politics but pro-life by my child.
So to answer your question, yes I believe that women do question their own believe systems, gain some knowledge (although I also believe that this knowledge is limited due lack of first hand experience) before making their decisions.
I think that people who are discussing options are trying to convey their own feelings and sometimes their personal beliefs become fact. But this holds true for both "sides" of the fence.
Life is pretty subjective, particularly when you are talking about "quality" and what a each individual person is willing to gain through life's experiences.
Anyway this are just my rambling thoughts on the subject.
Again, it's not ONLY the opinions of doctors that factor into these choices. That's only one very small piece in the puzzle. It's the in-real-life issues that are accounted for, too (which hold more weight in deciding). What one party feels is okay, another definitely will not view in the same way.
It's fine that you see things from the perspective that you do given your particular vantage point. I (and I think most others on the "opposite side") can and do accept that. However, you must realize that MANY others do not/will not/can not see things in your way. You may consider that wrong or unfortunate, and that's your perogative - BUT, being angry or upset over this isn't going to change anything. It only adds more fuel to this age-old debate. To be honest, some of the supposed "uplifting" articles and stories shared by your "side" serve only to reaffirm that the difficult choices that the "others" made were the correct ones. What is considered a positive thing from your perspective is interpreted as the complete opposite by the other "side".
There will always be two very different views when it involves the interpretation of "quality of life" - especially in regard to certain diagnoses (especially the non-lethal ones). The fact remains that it's each parent's own call to make, as it should be. Most adults can understand and accept this fact, even if they don't completely agree with it....and some can not. Again - as with most things - this is very personal and should not be judged or second guessed by ANYONE else.
To be honest, some of the supposed "uplifting" articles and stories shared by your "side" serve only to reaffirm that the difficult choices that the "others" made were the correct ones.
So by saying this you are confirming that you see people with certain disabilities and judge them unworthy of life.
And spare me the sparing my child that kind of life. The man in the video looked entirely happy to me! Graduated college and had a career and a family who loves him...wow...you would spare him that?
"However, you must realize that MANY others do not/will not/can not see things in your way."
When I hear people say this and/or quote the statistics that "80-90% terminate a pregnancy for Ds" I am led to believe that you are thinking that "it must be okay, because everyone else is doing it". My mother would have asked me, if everyone else is jumping off a bridge would you go too???
"It's like....you won a car in a sweepstakes. But before you pick it up at the dealer...several mechanics tell you of all the trouble they've seen in these cars...do you pick up the car anyway and accept the gift? Or do you call them up and say...give it to someone else, I don't want to risk getting attached to a car that may need mechanical service often."
UGH! If "we" had made the analogy between a special-needs CHILD and an inanimate piece of METAL, "you" would have been all over "us". Talk about comparing apples to oranges here.
Obviously, a car is one thing; a human being is another. A car won't need anesthesia or sedation prior to having it's repairs performed. A child will feel everything (fear, pain, worry) before, during, and after their "repairs". A car can't experience the mental and physical things a child can. It's so ridiculous to even suggest such a silly scenario.
"So by saying this you are confirming that you see people with certain disabilities and judge them unworthy of life."
This "side" is not judging anyone unworthy of life. It's the so-called "life" that they would be resigned to "living" that many of "us" feel is unfair to THEM (i.e. REMINDER -- This choice is about OUR children, not YOURS).
I repeat ... no matter how you may try to turn this around to be all about you and your children, IT IS NOT. Let me give you another (very lame) analogy: I like quiche. Many do not share my sentiments. Should I force them to eat quiche and brow beat them if they don't care for it in the same way that I do? Should I say that there's something very wrong with them for not seeing things MY way? No, that would be wrong because IT'S THEIR CHOICE, and I accept that.
It's pitiful how "you" claim that "we" are some of the least tolerant individuals there are. You couldn't be further off the mark. Take a good, long look in the mirror. Your "side" consists of some of the most narrow-minded, judgemental, and non-accepting people "out there". Oh, well. I guess that - for some - projection must be a whole lot easier to deal with than introspection.
Your "side" consists of some of the most narrow-minded, judgemental, and non-accepting people "out there". Oh, well. I guess that - for some - projection must be a whole lot easier to deal with than introspection.
Is this statement not projection in your eyes?
You deliberately choose to miss the point I was trying to make. You would KEEP the car, defective as it is, but not the child.
And if I remember correctly...anesthesia is recommended for the non disabled too is it not? So that tosses that analogy to the curb doesn't it.
I'm sorry you feel so put out and defensive. Again, my intent was just to say that if women who get a prenatal dx of DS didn't hear how happy (and who said..methinks you protest too much) you are with your decision and how you did what so many others have done...maybe some of these moms would get opinions from people living with the DX...not the ones who chose to avoid living with it.
"... maybe some of these moms would get opinions from people living with the DX..."
Do you realize that those very same stories and opinions have helped many others decide TO interrupt their pregnancies? Understandably this is not what you want to hear or face, but it is the truth. The real stories don't always portray the type of life that many think is kind for their own babies.
LOAD OF CRAP!!!
Where do you all find these parents who are so unhappy with their lives that they would paint a picture of such a nightmare of a life that they wish their kids weren't here? Death is preferable?
Sorry...that is one more falsehood you will NEVER convince me of
I know many many many people with kids with DS and other disabilities...none that I know or have ever met would paint such a picture.
Stop the lies and madness!
Hey, Cindy - thanks for being so encouraging and understanding!
(Because no one could ever have a valid opinion that's different than yours, I guess!)
I guess I'm just confused here...but I can understand how parents of a child with (or without) disabilities would want to brag about their children...(especially on a forum like this). Why do parents who have chosen abortion for their children want to brag? What is the argument here? ...that their choice of abortion is noteworthy and the world should know about it?
Of course Confused...it validates their "choice" when they convince others that it was "the right thing to do" and that their lives are so much better off.
And apparently...we are supposed to ENCOURAGE AND UNDERSTAND them now too!
MY ASS!
BWAAHAHAHAHAHAA!
"What is the argument here? ...that their choice of abortion is noteworthy and the world should know about it?"
No argument. Just the very in-your-face fact that choosing to tx IS a valid, legal, and caring choice - especially since most parents do not view living with mental retardation and other issues to be a loving option for their own offspring.
Cindy, encouragement and understanding from you and yours is the last thing anyone would ever expect. Can you say "Lost cause"?
You said, "BWAAHAHAHAHAHAHA"? Yes, as much (or as little) was expected. No big surprises, as usual. Thanks for not disappointing. ;-)
most parents do not view living with mental retardation and other issues to be a loving option for their own offspring.
This is exactly what confuses me. Why? ...and where do we draw the line? When does the "loving option" turn into something else? ...and how is this an "argument" against a person who is living and is loved? Doesn't that statement completely belittle the lives of those who do live with disabilities?
ghikbdtq"MY ASS!"
"Freakin weirdos."
"LOAD OF CRAP!!!"
Wow. Some of you DS moms can really fly off the handle pretty quickly. I hope you aren't this impatient with your kids...
No, they don't live your reality 24/7; but, they do learn enough to realize that they don't want to, either.
The honesty...refreshing
Wow. Some of you DS moms can really fly off the handle pretty quickly. I hope you aren't this impatient with your kids...
While I'm not a proponent of bad language and slams like that...I'm assuming some of the "DS Moms" have turned into mamma bears as a result of continually being forced to defend their children and their right to be living within our society...
Like this:
I hope you aren't this impatient with your kids...
Some of you DS moms
no...but you abortion moms sure like company.
I give up, I'm outta here!
abortion moms sure like company
…is that it?
Why do they all need to gather together to prove their view that:
the very in-your-face fact that choosing to tx IS a valid, legal, and caring choice –
Is that it? They just want to be “in the face” of the parents who chose the other option? I understand wanting to be in each other’s company to sort through their thoughts, maybe grieve their children, imagine how horrible their life would be if they would have let their child live…but why the need to band together and fight for/promote prenatal death of the mentally retarded…???
"but why the need to band together and fight for/promote prenatal death of the mentally retarded…???"
There is no need to do such a thing. No one does such a thing. That is a sick fantasy that anti-choice people have thought up. There is a HUGE difference in accepting termination as a valid choice when you have tragic diagnosis and "promoting" termination.
"..termination as a valid choice when you have tragic diagnosis"
And YES....even the gray area diagnoses are "tragic". Why do you think they call them "Poor Prenatal Diagnoses" in the first place?
I believe I have a unique perspective to add to this discussion. As the mom of a preemie I have been an avid reader of this blog for quite awhile. I received a pre-natal diagnosis that our precious baby had Down syndrome and a heart defect. It was completely unexpected and devastating, obviously. Like many of you, my first concern was for my daughter. What would having a sibling with special needs mean for her future? I didn’t want to burden her with a brother who would never be anything but a drain on our family. We didn’t have the resources of money, time, family support, etc. to be good parents to my daughter and a child with Down syndrome. I didn’t want to bring a child into the world only to suffer. These feelings were substantiated by the medical professionals involved in my care. They universally agreed that terminating was the right decision. So we made the choice, and I had the procedure. My grief was overwhelming.
About one year after the termination, I was again pregnant. I thought that perhaps we could finally move past the pain of losing our baby. The pregnancy was smooth, an amnio proved that the baby was healthy and that there were no chromosomal abnormalities. Everything seemed great. But at 22 weeks I went into labor, and the drs. were only able to stop it for a few weeks. My precious son was born at 25 weeks due to incompetent cervix, and both my OB and the perinatologist agreed that it was a direct result of the termination procedure. There was no other explanation. After months in the NICU, too many complications to recount, various surgeries and painful procedures, my son finally came home. And I was reminded everyday of the fact that my baby’s health issues and delays, his numerous special needs, were a direct result of trying to prevent having a baby with special needs. The irony continues to astound me.
But what I have learned in the 6 years since he was born amazes me more. I have learned that I do have the strength to raise this child. That yes, the drs. appts. and therapies which at the beginning seemed all encompassing, fade into the past as he grows older. I have seen my daughter grow beautifully into a compassionate and loving person. The experience of having a brother with special needs has exposed her to something that I always said I would teach my children. That different isn’t bad…that what makes a person beautiful isn’t what you can see with your eyes, or an IQ score. In the NICU, and since then at the children’s hospital, in specialists’ offices, at the early intervention center, in school…I have seen that children with Down syndrome, and other special needs are not burdens to their parents. These families have challenges, sure, but they also have joy. Their lives are more “normal” than not. I have seen the pride on parents faces (and felt it myself) when a goal that comes easily to others is finally mastered. I have heard stories and experienced myself marriages and families strengthened and enriched. I have seen that kids with Down syndrome, one of whom is now my son’s best friend, are absolutely not suffering. My son’s friend runs and laughs and plays, tells jokes, and is reading. He loves freely and fully. He had the same heart defect as the baby I terminated…and after surgery he was out of the hospital in a week and has never had any other complications.
I do not just regret being put in the situation; I deeply, and painfully, regret the choice that I made. I wish that I would have actually talked to parents of children with Down syndrome. Because one thing I know for sure—as capable and helpful as my son’s drs. and therapists are, not one of them can really know what it is like to be his parent, and to see the love that he brings to our family. My son’s needs in fact are greater and more complicated than most of the children with Down syndrome that I have encountered, but his life still has value. I never would have imagined myself in this position…and I didn’t think that I, or my marriage, or my daughter, could come out stronger for it. But we have. And I can also say unequivocally that children and adults with Down syndrome and other disabilities have a life worth living.
But I also cannot just sit back and not express my views on this subject. I do not judge anyone here who has terminated, including myself…I know that I made the best possible choices with the information I was given. But I have lived both sides of this issue. I have terminated for T21 and now am raising a child with special needs. I wish I had known then what I know now.
Anonymous 10:35
GOD bless you an dyour family.
And Thank you So VERY much for sharing your experience.
I am very sorry to hear of your difficult times. Incompetent cervix is one of those things that can be devastating. My friend lost two babies at 22 and 23 weeks because of it. She had no known risk factors. It can happen to a woman who has had trauma to her cervix (whether through a prior dilation or even childbirth). It can also happen to a woman who never had any cervical manipulation, as in my friend's case. Fortunately, it is very rare.
As I said before, I am sorry. Your story is very unusual and sad. Most women who terminate do not regret their decision and are able to have uncomplicated pregnancies and healthy babies with each subsequent pregnancy.
Best of luck to you and your family.
Now I don't think that that statement is very fair. I think many, many women who have terminated regret that decision. I just don't believe it gets talked about. After all...how often do any of us discuss our regrets openly?
And besides...how can you speak for so many, isn't that what you keep chiding us for doing?
Get a Clue said: "most parents do not view living with mental retardation and other issues to be a loving option for their own offspring."
While I am well aware of the 80-90% who choose termination if their testing shows that they are having a baby with DS, I also am well aware that many Moms/Dads choose to have NO TESTING done because they know that they would never abort.
I just don't believe that you can back up, with facts, using the terminology of MOST parents. At least, those in my circle of friends would completely and totally disagree with you.
Actually, I'm sure that the 10,000 people who were recently at a disability conference I attended would also disagree with you.
Anonymous 10:35...that was a very touching story. I'm sorry for your losses, and I'm happy for your gains. I also feel that our son has taught us so much...the compassion, selflessness and opening of our eyes to other people who have needs outside our own personal little circle are truly gifts; and these gifts completely outweigh any “burdens” that we may have to handle…and any flippancy that is offered us by others who truly don’t have the same understanding in their lives.
Most women who terminate do not regret their decision
I wish I would have known that before...I could have told the dozens of moms having had previous abortions that came to our SHARE meetings for grief counseling. I feel badly for any mom who isn't allowed to grieve the death of her child/offspring.
"...I could have told the dozens of moms having had previous abortions that came to our SHARE meetings for grief counseling."
Dozens, huh? Tell that to the MILLIONS of other women that don't need your so-called grief services. They grieve and cope just fine in their own time and ways, knowing that the choices they made were in the best interest of their babies and families.
For whatever reasons (how you were raised, religion, superiority complex, narrow mind, ignornance, or whatever), you choose to NOT accept the truth. That's not a good way to go through life, so do realize that your tunnel vision is likely to get you broad-sided by reality one of these days. Then, maybe (just maybe) you'll begin to understand.
Then, maybe (just maybe) you'll begin to understand.
I hope and pray that day never comes.
Anonymous 10:21, you said, "For whatever reasons (how you were raised, religion, superiority complex, narrow mind, ignornance, or whatever), you choose to NOT accept the truth." I know you weren't referring to me but I'm curious if you can you explain to me what exactly is the truth, with facts?
There are women who grieve the decision they made to have an abortion, just as there are women who don't grieve. Is that accurate? Or, it that difficult for you to admit?
We take our child who has DS with us, everywhere. We also knew prenatally that our baby was going to have DS. Not once, were we asked by friends/family the reason we were keeping the baby. Not once, have we been asked why we kept our baby. It seems to me that there are just a few on the internet who seem to propose the destruction of our precious children. In all honesty, I just don't get it. What is the reason that you continue to propose the death of our babies?
Maybe it is because we take our babies everywhere, so we are IN THEIR FACEs and they can't stand the fact that they don't have the cuddles, smiles and JOY we have.
For whatever reasons (how you were raised, religion, superiority complex, narrow mind, ignornance, or whatever), you choose to NOT accept the truth.
whose TRUTH? I am one of those who bases their feelings in large part on morals/faith. I can tell you this much, the TRUTH, the ONLY truth, is going to sneak up on some of you someday and hit you in the head like a lightning bolt. THEN you will come to understand what it is we are fighting for, and what you lost. The ONLY way to have peace on that day is to ask for forgiveness for whatever sins you have made. I have asked forgiveness for my sins. And oh boy, there are plenty of them. Luckily, they do not include attempting to brainwash and scare pregnant women into killing their children.
Truth be told, you who proclaim yourselves the keepers of the truth can't handle the truth. That's why you try to keep us away from pregnant women, that's why you have formed your crazy little killing bands that spout the virtues of killing human beings who don't measure up to YOUR standards. That's why you march behind a woman who is so aware of what she is doing that she names herself after the goddess of death, that's why she and you will drag hundreds of people down with you, no matter how loudly we speak the TRUTH.
I personally think you know the truth. I think you are afraid of it. I think anyone with a leg to stand on is not afraid to shine a light on TRUTH. Scientific fact-based evidence telling you that your babies died horrible brutal deaths, real life truth from the mouths of "the DS moms" which tells you that the thing you feared most is nothing to fear. Even the law that you hang your little hearts on is speaking out for the truth, but the Supreme Court isnt a good enough source for you.
If you aren't afraid of the truth, stop trying to demean and belittle children with disabilities to make yourselves feel better. Stop trying to keep REAL information away from moms who need it. Stop trolling the boards looking for moms to drag off into your little corner of hell. And stop telling we who LIVE with the truth every single day what it looks and feels like to raise kids with DS. You are a bitter, hateful, illogical bunch of naysayers who wouldn't admit it was hot in hell. YOUR reality is being disproven over and over and over again, and we KNOW you are scared that you will lose the chance to kill your babies, the worlds eyes are opening, and you have to lie to convince yourselves that what you are doing is not only legal (which it is, for now) but morally sound. (Which it isnt) This argument will never end, none of us will ever change anyone's minds. But I can promise you, as long as you continue bashing our kids to make yourselves feel better, we WILL be here to defend them.
I have to agree with everything Michelle has said...with the exception of the word LOST
You didn't LOSE your baby...you threw your child away like a piece of refuse you didn't want around.
Anonymous 10:24AM - Now don't hope and pray too hard. It would be wise for you to save those prayers for all the things that you're really going to need.
Don't worry, though. It's not likely that you'll ever attempt to see things from any viewpoint but your very own. That's such a shame; but, (unlike you) I can and do accept it.
Anonymous 10:43AM - Propose the death of YOUR babies? I've said no such thing. You have your babies. You think it's a wonderful life, and I won't argue that point with you. You, however, want to negate other womens' choices who don't see trisomy 21 and other birth defects as a good thing for their children to deal with. How many times do I have to say that it's not about YOU and YOUR baby. It's about each individual's baby. Stop making it personal. You also said, "Not once, were we asked by friends/family the reason we were keeping the baby. Not once, have we been asked why we kept our baby." Of course they wouldn't say such things. They're your FRIENDS and FAMILY, for pete's sakes. There are other factors involved, including some heavy duty filters in place. What they may think/say behind closed doors would probably shock and disappoint you, and not because they don't think your child is "worthy", but because they aren't seeing Down syndrome through the same rose-colored glasses that you as a mother do. That's another reality that some on your "side" can't seem to grasp.
"No Empty Arms" - We didn't throw our babies away. We spared them from the life that we deemed unfair to them. OUR call, NOT YOURS. Their spirits are free and untethered by what T21 and the other sad problems would have meant. If telling yourself that makes your reality seem less harsh, then have at it.
Michelle: Sheeesh. You speak out of both sides of your mouth constantly. Total hogwash. Your posts serve to prove that you don't have the slightest understanding of what you THINK is fact (and the fact that your "pals" agree with you speaks for itself). Thank you for that as - coming from you - it loses all credability. Suffice it to say that there are some on this "side" who actually feel very sorry for YOU. (What is Christ's love? Do you practice what you so freely preach? Hmmmmm. Food for thought).
For those of you who chose to continue your pregnancies after receiving a poor prenatal diagnosis, despite what you think I wish you and your children the best. You have what you chose and that's fine. For those of you who chose no testing and/or didn't know, I also wish you the best. You have to handle what you have. I know that you love your children, as you should...but don't expect everyone else to see T21 as something wonderful just because you do. You're setting yourself up for failure that way.
As always, I agree to disagree. Too bad the same can't be said for most others. Oh, well. Have a great day :-)
we'll see sweetie. That day WILL come. I can only hope I make it, given mistakes I have made and the forgiveness I have asked for. We will see.
Now don't hope and pray too hard. It would be wise for you to save those prayers for all the things that you're really going to need.
You're so right. I will pray for you also. I'm not sure that I understand your feeling that you are not personally attacking any moms with DS...when you are telling us that you aborted your child so that he/she would not be like our child. That's extremely personal and condescending.
However, I do believe that your abortion was your choice. I do believe you have the ability and the legal right to make your own decision. I do "know" that DS is not a condition that would cause a child to have a life of grief and unhappiness (or wish that they would have been aborted and denied life) ...therefore I believe that an abortion because of a DS (or other “disability”) suspicion or diagnosis is purely done because of what the original post stated:
I suspect the real reason they and most parents pregnant with anomalous children terminate the pregnancy is for themselves, so they don't have to deal with the problem.
Some doctors truly DO understand.
Anonymous 11:22 -
You say, "As always, I agree to disagree." What? You're agreeing to disagree after throwing out your attacks on individuals?
You didn't answer my questions....what is the truth? Where are the facts?
You also said, "You, however, want to negate other womens' choices who don't see trisomy 21 and other birth defects as a good thing for their children to deal with. How many times do I have to say that it's not about YOU and YOUR baby. It's about each individual's baby. Stop making it personal." I never made it personal with you, as you did with me. I asked you for the facts and asked you to describe the truth.
You said, "You also said, "Not once, were we asked by friends/family the reason we were keeping the baby. Not once, have we been asked why we kept our baby." Of course they wouldn't say such things. They're your FRIENDS and FAMILY, for pete's sakes. There are other factors involved, including some heavy duty filters in place. What they may think/say behind closed doors would probably shock and disappoint you, and not because they don't think your child is "worthy", but because they aren't seeing Down syndrome through the same rose-colored glasses that you as a mother do. That's another reality that some on your "side" can't seem to grasp." THIS IS WHERE I WILL SAY THAT I WILL AGREE TO DISAGREE WITH YOU. How can you say that? You don't know me just as you don't know my family and friends. You don't know the OUTPOURING of love and understanding that we have had from so many people, including people we don't even know! You have no right, at all, to say that I am looking through rose colored glasses. You don't know me.
Oh, and by the way, my reality is my reality, as is yours. I think we can both agree on that. But, everytime you try to take my reality and squash it, I just can't accept that.
You also said, "For those of you who chose to continue your pregnancies after receiving a poor prenatal diagnosis, despite what you think I wish you and your children the best. You have what you chose and that's fine. For those of you who chose no testing and/or didn't know, I also wish you the best. You have to handle what you have. I know that you love your children, as you should..." I just want to say thank you for that.
This is better. Emotional matters can bring out the fighters in all of us. Thank you.
No, I don't know you and you don't know me. That's really my whole point in this "Reasons" thread,too. We each make our statements from our OWN realities. That's to be expected and (hopefully) accepted. I'm not out to tell other women to tx just because I feel it was right for my situation. It's their own difficult choice either way. I will defend a woman's right to choose (especially for a poor prenatal diagnosis, but in general because the line can be blurred far too easily). Although I may not agree with the circumstances of the majority of "routine" abortions, I do accept it and won't judge anyone who chooses to do so because I am not them and I don't live their lives. The same holds true for "your" reality with T21 or other diagnoses, and "our" reality having chosen to not allow our children to live with the same.
Michelle, we will all find out what lies ahead after our time here is through. My beliefs are strong, despite having chosen to tx. God knows my heart. He knows that I don't hate imperfection. He knows that I don't see YOUR children as "rejects" or not worthy of love. He realizes that I'm not the monster or butcher that some wish to portray me as being because I chose what I did for my OWN baby. My faith was a bit shaken at first, but not anymore. I don't want this to turn into yet another debate (religious), so let me preface this by stating that this is MY opinion only. I respect that others may not hold the same viewpoints. My take on all of this is that God made Adam and Eve in His own image. They sinned, which set the wheels in motion for the rest of time as we know it. Things are a whole lot different than they were in the Garden of Eden, thanks to Adam and Eve. There are now crimes and diseases and free radicals and a whole host of other things, some of which may play a hand in genetics and such. That's really neither here nor there, as it is what it is. I don't believe that God CAUSES these things to happen...he just ALLOWS things to unfold in the way that they will. He also allows us free choice to do what we deem best for OUR OWN lives. I know that He understands, as He is the one that created us and gave us free will. He is there for the hard times, even though He didn't directly cause them. If we ask, He will help us through our challenges, no matter what "side" that may be. He has helped me through my difficult choice to tx. Although I don't feel that is a choice that requires forgiveness per se, I do know that He understands and forgives if necessary. I do believe that my baby's spirit is in Heaven and knows no strife. Although I miss my baby more than I can attempt to convey, I do have a deep peace about that. It's a choice that I would make again if put into the same situation, and it would be just as difficult the next time. However, those are my beliefs and I will defend them just as you all will defend yours. It's our nature to stand firm on our beliefs. I think that's a good thing, as long as we can accept that others won't see things as we do and respect others even if we disagree completely.
Somebody wrote of aborted babies with T21, "Their spirits are free and untethered by what T21 and the other sad problems would have meant."
Just to be clear, they're not "untethered," they're dead.
anon 1:01
now you are speaking a language tht I can understand. I HEAR you. I dont agree with you in many respects, but I DO hear you. See, if this issue was left to the real parents and not the militant ones (on either side, yes, guilty as chanrged) then THAT would be the real dialogue. You would not seek to hurt me by using my child, I would do the same. And we would talk honestly, without hurting one another, and share our feelings and maybe our faith.
You didnt attack me or my child, you didnt spew venom, you spoke openly about YOUR feelings. Thats all we are asking for. That we be allowed to speak the same, that our real life experiences be allowed to be heard. That the attacking of kids with DS just to score points be anathema to ALL of us. I sure dont want to hurt anyone. You'de be shocked at some of what has been censored by me along the way, I can respond angrily and hatefully, I feel like Im literally fighting for my childs life. I have tried hard on this blog to post without losing my temper or intentionally hurting others, even though I have seen the not-so-subtle digs about my sons death that have been made. Even though I have read the nasty unconscionable posts by another ds mom whose axe has been ground to a nice sharp blade over years and years of attacks against me that have no explanation. I dont want to hurt you or anyone else. I DO want to be able to speak about MY reality, to be able to offer hope, and to be respected in turn for the strength of my convictions. For the record, I dont hate you, I dont KNOW you. I hate being cornered to the point that we cant tell expectant moms who are on the fence what it is for US to live with DS. I hate that this cat and mouse anon game has gotten so nasty and cruel. I hate that from BOTH sides. But I dont hate you. And I dont take anything good from the loss of your child, I grieve that child with you. Im sorry for the loss of that child to you and the world, and Im sorry that you ever had to make that choice. It takes away some of the innocense of pregnancy. Im sad for you, and Im sad for us.
But honestly, I wish more people could post as you just did and leave the hurt out of this terrible issue and just TALK. But inevitably, your side uses our children as weapons against us, and make it SEEM like the world is full of hatred for them and disdain for us. MY reality tells me this is not true. MY reality tells me our lives have been graced somehow, enhanced, and truly enlightened by having my child in it. I dont need anyone to tell me that, I feel it every single day. I wish you had used a name, so I could thank you for being human, in the midst of all of this. Whoever you are, your decency in THIS post was a welcome relief. Thank you for that.
"Just to be clear, they're not "untethered," they're dead."
That comment is both expected and ignorant. Their affected physical being is no longer with us, but their spirit is very much alive and very much UNaffected. Hence a huge reason behind choosing to tx. I miss my baby, but MY OPINION is that things are much better in Heaven than they ever could be on earth (even with the best therapies, surgeries, early interventions, etc.).
"Ouch - it hurts, doesn't it?"
No, quite frankly the ignorant words of others don't hurt at all. I consider the view from their position and can accept that they see things differently. It obviously doesn't go both ways. That's too bad, but it's their shortcoming with which to deal.
For the record: Neonatal Doc's statement doesn't bother me. He and his wife probably haven't ever been in the position of having a poor prenatal diagnosis PERSONALLY, so his stance is typical. I would have said the same things before having experienced it myself. Now, I know much better and despite my pain, I am thankful that my circumstances allowed me to become a much less judgemental person. Too bad some "others" are too focused on themselves to do the same.
Michelle: Although we're on opposite ends of the spectrum on this issue, at least we agree to disagree. You will never agree with my choice, just as I don't see that continuing a pregnancy (in MY case) was the right choice for MY baby. I appreciate that.
I choose to remain anonymous because of some of the commenters. It's apparent that they downright HATE those of us who chose to tx for the same diagnoses that their children have. Until they get it through their heads that OUR choices are not begrudging THEIR children the best life possible, then it's better to not set myself up for the vile posts that come from some of the most black-hearted people. Their child's welfare and upbringing are in their hands. I hope instead of just singing the praises of T21, they're actually DOING something about improving their own child's being. Using the blanket statement that those who choose to tx are ruining things for their kids is passing the buck. It's up to them (and ALL parents of both challenged and typical kids alike).
For all who condemn, judge, and name-call: I've said all that I can. I know beyond a shadow of a doubt that I made the right decision for my baby. Easy, no....right, yes. If you don't agree, that's your choice. I can accept that and continue to be a very happy and content person....but can you?
"That comment is both expected and ignorant. . .Their affected physical being is no longer with us"
Your child is no longer with us because because its dead. That is truth and the truth is not ignorance. Masking the truth in self-serving euphamisms would better fit the definition of ignorant.
"Most women who terminate do not regret their decision"
"I wish I would have known that before...I could have told the dozens of moms having had previous abortions that came to our SHARE meetings for grief counseling. I feel badly for any mom who isn't allowed to grieve the death of her child/offspring. "
I wouldn't make the mistake of confusing grief with regret. I grieve my son tremendously - But I don't regret our decision to let him go early. I do regret the terrible fluke of nature that made it impossible for him to survive.
(BTW, before anyone attacks me, our issue was a mix of a fatal dx combined with threats to my health.)
anon 7:45
first, I am sorry for your loss. No matter how it happened, it IS a loss. I am curious about a few things. You mention somewhat defensively that it WAS a termination for a fatal diagnosis, as well as one that affected your health. That you would mention those seems to speak volumes about how women perceive terminations. Someone earlier mentioned that they feel their abortion for prenatal dx was different somehow than a run-of-the-mill abortion. Both those statements caught my eye.
MANY of us in the DS community have been very clear that while we may not morally agree with termination for any reason, that there is sort of an emotional coming to terms with a termination for true fetal diagnosis or the genuine risk to a mothers LIFE...not mental health but life. It is that "grey area" many of us have not yet come to terms with.
DS is not a terminal diagnosis, very very few kids with DS are terminally ill. Medicine is catching up, heart surgeries are fixing things they never could before, and frankly some kids have SO few medical issues that it is shocking to hear they are killed for having them generally.
I am curious where you, as someone who has terminated, draw the line? You clearly see the distinction, which is not often acknowledged by your side of the fence. I am still working out my own feelings on this issue, though I tend towards prolife in all cases, there are times when a baby is suffering, truly suffering, that I feel it MIGHT be humane to allow them to slip away. Not through D&E or D&X, not with digoxin to the heart. Those are painful ways to die, in my opinion. But somehow gently, with dignity. As I type that, I feel my mind tugging at me, I do NOT believe in abortion. But sometimes that grey area is there, wether we like it or not.
I categorically do not believe that abortion for cleft lip, spina bifida, DS, extra digits, sex selection, fetal reduction, etc are morally acceptable. I am less sure about babies with brittle bone disease, who will suffer interminably even in the womb. Or babies with no skulls, and some other rare but troublesome issues. I am even less sure when a mother WILL die, not might die, not could die...but when a woman WILL die if she does not have surgery etc. Again, those issues make my head want to explode, SO many variables, so many awful things that can happen, and always always the subjective nature of deciding what suffering IS.
I guess I am wondering your take on this. And I recognize that within your community, admitting that one abortion is "better than" another is anathema. But you are anon, and so I think you might just give an honest opinion.
Again, I am sorry for your pain. Wish we didnt have to have these discussions, and sure wish we could find a way to have them without hurting one another.
"DS is not a terminal diagnosis, very very few kids with DS are terminally ill."
From the Riverbend Down Syndrome Parent Support Group:
"From the About 80% of trisomy 21 conceptions result in pregnancy loss. After amniocentesis confirmed trisomy 21, 10.2% of the pregnancies ended fetal demise. From the National Down Syndrome Cytogenetic Register (1989-1996) between the time of chorionic villus sampling and term an estimated 43% of pregnancies ended in a miscarriage or still birth, between the time of amniocentesis and term an estimated 23% of pregnancies ended in a miscarriage or still birth, and 12% of births were stillborn or resulted in a neonatal death. "
You are right: most children with DS who make it to term are not terminally ill; but very many fetuses with Trisomy 21 are very ill - so ill that they do not make it to term or die within months of birth. My pregnancy belonged in this category. The placenta was a nightmare and my son was being cut off from nourishment, slowly being starved to death. The bizarre growth of the placenta caused me repeated hemorrhaging. We decided to let him go at 14 weeks after waiting for the m/c to occur, but after yet another bleeding episode (with a liter of blood and clots) finally made us decide that it was not worth risking my health for a baby that had no chance at life.
It was difficult and tragic and I grieved, but I do not regret the decision.
I also have no answers for you as to "my take" on anything. I do know that I received no support from DS communities online, where I mistakenly turned in my desparation. At one online site I was ridiculed for even mentioning that T-21 was behind my problems. But that's what on the autopsy of both fetus and placenta, and it is why I - yes, somewhat defensively - post this info above from the RB DS parent's site, to defend myself from attacks.
I found much more support from women on the - as you put it -"other side of the fence" - although I don't see myself as a category. We had a tough decision to make, and we made it.
I wouldn't dream of putting myself in anyone else's shoes and speculating "what I would do if..." My situation was mine, and others had theirs and I cannot offer opinions as to what anyone else should do, except perhaps show tolerance and compassion in all cases.
yep, no doubt about it. Our kids are miracles. ;) The ones who do survive to birth are fighters, and they have near normal life expectancies. My own daughter has had NONE of the expected medical issues from DS. She has had tonsils and tubes in her ears, just like her non ds big sister (with a better outcome, actually)
Riverbend is an awesome site, isnt it? Did you catch this gem?
Messages about disability implicit in testing
There is an implicit message within the goals of prenatal testing that society believes that raising a child with disability, is such a grave burden that it is both morally correct and medically appropriate to take expensive measures to ensure that such children are not born. (Murray 1996:132).
Testing is frequently presented as a compassionate enterprise, assisting families to avoid the birth of a child with disability. Early testing is sought to avoid the difficulties of late terminations. However, earlier testing and multiple, periodic forms of testing also emphasize the importance of detecting all affected pregnancies and further entrench a consensus that the rational response to a positive prenatal diagnosis is termination. The language of "choice", "reassurance" and "family well-being" obscures a reality that universal population screening is introduced because it is supported by cost-benefit analyses which assess the prevention of the birth of babies with disability as a core social benefit.
The idea that people with disability contribute to their families and to the community and that the experience of disability adds to our understanding of what it is to be a human being, is readily dismissed as irrational or sentimental. Even where it is acknowledged that parents can find the experience rewarding, they are considered "lesser" rewards. It might be conceded that once a child is there you have no choice but to make the most of it, but it is an experience which it is sensible to avoid.
Because there are few treatment options, testing is fundamentally linked to the option of "therapeutic" abortion. This reality is often obscured. Prenatal diagnosis is marketed as a form of "reassurance" rather than a form of prenatal selection (Lippman 1992:144). The reassurance rationale is undermined by evidence that testing may merely relieve the anxiety which has been artificially raised by the testing itself (Gates 1994). Testing also offers a very limited form of reassurance; a normal set of chromosomes does not rule out the possibility of disability.
Within the marketing of testing the "fear" of disability is both encouraged and overstated. In March this year there was a rush of publicity over the development of laboratory processes which give chromosomal results more rapidly. Dr Ian Findlay, one of those responsible for developing the so-called "one day test for Down syndrome", was quoted:
This means parents can decide on the next step sooner and do not have to experience the despair of waiting three weeks for an answer. (University of Queensland News, March 14, 2000).
This exemplifies key problems within the dominant biomedical explanation of prenatal testing. Prenatal testing rescues couples from "despair". It is common for expectant mothers and fathers to feel anxious about the health of their baby and waiting for test results can be a difficult time. Nevertheless does the mere possibility of a diagnosis of Down syndrome warrant despair? Is prenatal testing actually reinforcing an unjustifiable fear and horror of disability?
There is also the existence of the implied "next step" and a momentum which makes almost instantaneous decision making preferable to any prolonged introspection about the implications of a positive test result. Statistics indicate that less than 2% of couples in Victoria continue pregnancies following a diagnosis of Down syndrome (Ford 1999:69). Proponents of prenatal testing often offer the high rates of termination as proof that they are meeting consumer demand. I suspect something different in these statistics. I fear decisions made in haste and without adequate information about what disability is likely to mean for their child and for themselves as parents.
How different the statistics might look if couples were given the knowledge that families with disability are able to provide—not only the demands but the resources, not just the stresses but the rewards, the news that siblings are not usually adversely affected but share warm relationships with their brother or sister with disability, that many couples find their marriage enriched not threatened and that overall the experience is positive and ordinary. Many, maybe most, would probably still terminate. However evidence from an American genetic counselling service where couples are actively encouraged to have contact with families with a member with Down syndrome, that 38% continue the pregnancies (Parens and Asch 1999, s9) compared to the 2-16% reported elsewhere (Rapp 1999:223, Ford 1999, Drugan, Greb et al 1990).
Is women's reproductive autonomy enhanced by prenatal testing?
Routine testing can be difficult to decline and so can diminish (rather than enhance) autonomous choice. Many feminists have critiqued prenatal testing on the grounds that prenatal testing regimes contribute to the medicalization of pregnancy and actually diminish women's control over their own bodies. Additionally many have recognized that decision-making often occurs without adequate knowledge of the purpose of the testing or about the conditions for which testing is conducted. Two women who had amniocentesis following ultrasound findings were not told the miscarriage risk of the procedure. Sally related that the test was described as absolutely standard, presented as no more serious than having a urine test, "Why wouldn't you want it?"
Down syndrome is "well recognized" and particularly surrounded by unhelpful stereotypes. The diagnosis of Down syndrome is assumed to provide sufficient information on which to make a decision to continue or terminate a pregnancy. In contrast, the women's stories indicated the way they now contested their initial understandings of Down syndrome. The mothers overwhelmingly saw their children as healthy (not ill or diseased) and saw Down syndrome as a "lesser disability" or scarcely a disability at all. They also saw the diagnosis as inherently ambiguous. While the chromosomal result for Down syndrome is definitive, the message from mothers of children with Down syndrome is that it does not tell you how your life or the life of your child will be.
It is the common wisdom of parents of children with Down syndrome that the first days are the hardest and the time when it is most difficult to think calmly and realistically. Some doctors push women to make decisions quickly while still reeling from the diagnosis. Julie was strongly encouraged to terminate her pregnancy the same afternoon she received the diagnosis.
They were ready to take us up there straight away and do it. There was no, oh here's the number for the Down syndrome association or anything, give them a call... there was no, no information. They were just thinking, Down syndrome get rid of it.
A number of participants spontaneously suggested that they would have previously terminated a pregnancy for a diagnosis of Down syndrome. This awareness led many to suggest they were extremely grateful that they had not known because they would have "gone into panic mode":
In retrospect if someone had've told me that you're going to have this, and this and this (extra medical problems) I probably would have considered my options then, although I'm very, very glad that we didn't .. you know I'm really pleased with the way everything's worked out. We think that we have the most beautiful baby in the world.
Four women in my study continued pregnancies following a positive diagnosis of Down syndrome. Three of the women stated that termination was not an option. One woman, intended to terminate her pregnancy but changed her mind in the forty-eight hours following the diagnosis:
I just walked out and I said I don't want this kid, get rid of it. As soon as I was out the door of the office that's the first thing I said. We've still got him, something happened somewhere (laughing)... Once I sort of got over that, you know, it didn't take long. I just sort of settled down and went well, you know, you're being stupid... could be worse.
Prenatal diagnosis raises profound questions about the value of children and the sort of human community we are creating.
Prenatal testing promotes an emphasis on control and choice. But these are largely illusory in the context of parenthood. The journey into parenting is a leap of faith, one which requires considerable courage for we cannot control either our children or the circumstances they are likely to meet. Barbara Rothman questions the helpfulness of "standards of acceptability" in preparing for the "reality of parenthood" (Rothman 1986:7). As Thomas Murray suggests "Good families are characterized more by acceptance than control" (Murray 1996:31). It may be that "good communities" are characterized by similar values of acceptance and flexibility.
Many mothers described a journey of surrendering control: that there were "no guarantees", that "things happen for a reason" and that giving up one's prior expectations of motherhood and of your offspring could be a gift.
This idea that having a child with disability had brought a richer life was very common in my interviews. The positive changes included having one's prejudices about disability dismissed, discovering one's own resilience and strength and the ability to speak up for yourself and your child, and feeling a strong sense of what really mattered.
There is a disturbing gap between the technological momentum and discussion on the impact of these developments. Despite continuing media interest in the issues, I contend that the current practice of routine prenatal testing presumes that the ethical questions are "settled." The position statement adopted by the DSAQ challenges the dominant narrative of disability as disaster. It claims that people with Down syndrome should not have their potential or humanity written off. The stories and experiences of people with disability and their families is proposed as a support for those who are making decisions about the composition of our next generation. In particular, stories of surviving the "crisis" of disability should help both expectant couples and professionals to understand that the shock and grief following a diagnosis is not predictive of the long-term future for families. The statement suggests a series of guidelines which could ensure that testing is truly voluntary and informed, and that decision-making does not rely on myths. Most strongly it challenges the idea that reducing the incidence of Down syndrome through abortion is an honourable goal. It identifies this goal as a threat to the richness and diversity of our community. It asserts that people with disability should be seen as valuable and necessary members of our community. It is shared in the sincere hope that a future where people with disability are welcomed is possible.
this article is under Ethics and Eugenics:
Confronting the Distortions: Mothers of Children with Down Syndrome and Prenatal Testing
Riverbend is a GREAT resource, thanks for reminding me.
I tx for T21, which I know the other "side" considers unconscionable. Many feel as I do, too. It's all subjective.
There really isn't a more right or wrong diagnosis for which to tx. True, some that will definitely cause death (to mom or baby) during or shortly after birth might be seen as a little "easier" decision to make (nothing easy about it), but the outcome is the same no matter what the sad prenatal news happens to be. Also, I think that the large majority see tx'ing for extra fingers or toes, the sex of the child, and other more superficial and "cosmetic" reasons to be SO much different than choosing to tx because of a KNOWN syndrome and the "givens" that the syndrome will bring with it. The "gray area" diagnoses (T21, SB, CF, Turner's, Kleinfelter's, XYY, and such) are truly very tough. The fact that some (T21 for example) bring with them the guarantee of mental retardation is often enough for most parents to make the decision to tx. I realize that's not what parents of these children want to hear, but it's very true. It's not because "we" are totally self-serving or only want perfection. That is one of the most erroneous expectations that the "others" place upon "us". It's truly because many parents do NOT see these issues as a kind and loving life for their children. There are also health issues that they don't wish upon their beloved babies. Those of you living with these issues undoubtedly see things differently, and that's both understood and expected. SB and CF are similar, yet different. Odds are that those children won't have mental retardation, but they will likely have a huge host of physical and medical issues. Again, that is more than enough of a reason for many parents to tx...to spare their babies what this would mean.
As always, it all boils down to parent's viewpoint on how much they want their child to endure. It's next to impossible to explain because it's such a personal and subjective proposition. For those that feel abortion is wrong under ANY circumstances, then this will be poo-poo'd. I can't help that. If others aren't open to the honest viewpoints of others, that's their option. I personally wouldn't want to be so set in my ways, and that's my choice.
"Our" side understands that all poor prenatal diagnoses (so-called "lethal" and not) can vary greatly. Nobody has a crystal ball, but there is plenty of documented information (much of it from NADS and other such agencies). This information (as well as MUCH more) is taken into consideration before opting to make such a difficult decision on behalf of a baby that is very anticipated, wanted, and loved. It is up to each person/spouse/family to choose what they feel is best for their own babies, and many don't feel that even the "not so bad" diagnoses are a good thing.
There isn't much "in-fighting" among those of "us" who choose to tx, as we understand the complexity of making such difficult decisions (as only those who have gone this route can). We don't "split hairs" or feel slighted that one PPD was "better" (easier to decide) than another. (Unlike the MDS vs. Vanilla DS spat that sometimes happens on your "side"). ;-)
I'm sure that nay sayers will scoff at this, and I fully expect it. However, you asked and this is my (and many others') honest to goodness view. Despite what is thought, we will always love our babies and know that we made the right choice for THEM.
sometimes I read stuff and am left scratching my head. In all the years I have both been on and run DS boards, I have never seen a spat regarding Mosaic vs full T21. Not ever.
Also, your facts need adjusting. As the world of education changes for these kids, more and more of them are being tested and found NOT to have MR. Yes, it is rare, but is is happening.Some of that is due to different testing, nonverbal testing allows for better insight into our kids, who often have speech delays. I think as they are more and more acclimated into the world, and educated as they should be, you will see it happening more often. Already, IQ levels are climbing. is that something inherent in the kid, or in the testing? As far as our personal situation, we strive for the best, hope for the best, and live each day taking whatever we get and being grateful for it.
"As far as our personal situation, we strive for the best, hope for the best, and live each day taking whatever we get and being grateful for it."
Exactly as you and all others should do as a parent of children that are "here". I'd be doing doing the same things (i.e. being my child's biggest supporter, advocate and fan) had we NOT opted for the amnio. It's all relative, though. I would not expect others to see things 100% my way. We each see things in our own ways and that's fine. It's best to leave it at that.
The MDS vs. "regular" DS friction does happen at times. As a matter of fact, it's part of a hot topic/current thread on popular baby site right now. One mom of a child with "Vanilla T21" (who is known for this type of attitude anyway) got her feathers ruffled because another mom stated that she felt "lucky" that her child has MDS. That comment didn't settle well with this mom and some others, obviously. Oh, well. Everyone handles things in their own ways and sometimes interpret things in a way that is skewed to their own advantage (or so they think).
Since the beginning of time, people have tended to their personal affairs as they have seen fit. It's the same in all of our situations. I won't condemn your viewpoints. Hopefully, the flip side is true as well.
Have a nice weekend.
rereading your post...
The fact that some (T21 for example) bring with them the guarantee of mental retardation is often enough for most parents to make the decision to tx.
THAT is intellectual honesty. MR is big and scary, and it is what most parents base their terminations on. MR does not cause a person to suffer. It just causes them to learn more slowly. Not a single one of us learns at a set pace, we are individuals. I certainly hope my IQ is not seen as the sum total of who I am and my worth in the world.
"michelle said...
PS
If we, as a society, can kill at will, any living thing whose life we have decided is intolerably painful, sad, unworthy, useless...then where shall we start?"
Correct me if i'm wrong, but, didn't you vote FOR the war?
LMAO, I really REALLY shouldnt justify that but you know me...
vote for the war??? As in Iraq? Um....actually no, I didnt vote for the war. Perhaps this is a nuance of American society I have missed out on, but last I knew, we dont get a vote on wether or not we go to war. Now, are you more likely asking, didnt I vote FOR George W Bush? That probably is none of your business, however, as I am pretty open about it...yeah...I did. And I would again. And so did the majority of people who voted. He won. Get over it. As for the war in Iraq? Its tough. Yeah, war sucks, in general. I am from a long line of military people, and I am DAMN proud of our men and women in uniform and what they do. Do I have questions about the war...? Obviously. Wish it wasnt necessary, wish it would end. But I support my country, I support our troops. I support our President.
Was this about abortion or was it about the war in Iraq? Or are you just looking for anything possible to throw my way? I am a Republican, Conservative, Prolife, Christian. I think GWB had the cajones to put someone in place in the Supreme Court who will change the face of abortion in the coming years. And I think thats what you are asking me, isnt it? I support GWB because he had the courage to DO something about this killing field that is abortion. And you hate him for the very same reasons. Are we comparing numbers?
Number of abortions per year:
1.37 Million (1996)
Number of abortions per day: Approximately 3,700
Alan Guttmacher Institute
Avg deaths per yr in Iraq:
12,617 from 20th March 2005 to 1st March 2006 (346 days: Year 3).
Avg deaths per day in Iraq, includes all deaths related to war, INCLUDING Terrorist deaths:
36
http://www.iraqbodycount.org/press/pr13.php
Now, back to our originally scheduled program....
children that are "here". I'd be doing doing the same things
Your child WAS here
Just a few precious inches from the light of life...
ever read Psalm 139:13??
you let the safest place a child should ever have, your womb, be invaded...just because she might need a bit more of your precious time.
Beautifully put Michelle.
thinking about those numbers:
Guttamacher whatever his name is says there are 1.29 million abortions per year occur, with .08% of them being after 24 weeks. Those are terminations that are vastly made up of D&Es, some inductions, and some D&Xs. Thats a LOT of babies who are viable. 16,125 babies killed in the womb after 24 weeks. Thats 44 per day. LATE TERM abortions.
http://www.guttmacher.org/presentations/abort_slides.pdf
• An estimated 0.08% of abortions are performed after 24 weeks, when the fetus may be viable.
"Riverbend is a GREAT resource, thanks for reminding me. "
Yes it is, and I was really glad to discover that I am not the only mother in the world of a baby for whom T-21 was a terminal condition.
But I don't quite understand why your reponse to my post was to quote an article about testing morality and telling me how wonderfully healthy your daughter is.
Michelle, as this is all about you...
Did those abortion stats include fetuses who had already passed away? Just curious.
I would say not...those would be considered fetal demises, not abortions--obviously.
Whoa, what kind of delusional mind thinks that by posting truthful statistics and correcting others misconceptions regarding Down syndrome, it makes it "all about them"????
Sick...get a life woman. We know who you are...and find you pitiful in your attempt to provoke. Frankly...you are starting to bore us with your constantly baiting Michelle and turning the conversation back to her. You do that much more than anyone else...do you realize that? Are you really just a secret admirer J?
omw. Thats Planned Parenthood's OWN stat sites, you doofus. Obviously, they are talking about live abortions. I always think I have seen the most stupid comments...(ie: the laminaria cause the baby to die...omg...delusional) then I see THIS kind of absolute and total stupidity and I am left wondering. I have always thought the people on your side were actually quite smart, crafty enough to keep the conversation about abortion from being discussed by claiming privacy rights and all. This is shocking. At the very least, couldnt you people at least ADMIT what your leaders admit? I mean, get on the same page at least. Holy smokes.
.0008 x 1,290,000=1,032 NOT 16,125
So only 2-3 abortions are performed per day after 24 weeks.
Yeah - it's only 1032, you doofus.
To No empty arms here - I tried to pull up your blog from your profile page and it wasn't found. Is this also you - http://www.blogger.com/profile/15527696
??? Just curious. :)
mmmm. nope! Sorry.
I do find it a bit odd and suspicious that someone who chooses to remain anonymous would try to "find" another person and then post what she finds...kinda hypocritical isn't it?
Can we get a link to YOUR blog?
I don't have a blog. And I don't see what's so odd about me trying to see your blog. You obviously had one at one point. Anyone can see that. You have posted here with some very opinionated comments, even calling someone from our side "sick" and "pitiful". I was just trying to find out what makes you so angry.
I do find it curious that your previous blog had "wonderfullifewith7" in the address, and this other "It's A Wonderful Life" blog is a woman with 5 children, who also has Neonataldoc's blog listed as a blog of interest. Just a coincidence?
I'm not an angry person...I just happen to take offense at people trying to tell the world that kids like mine are "suffering" and advocating the eradication of an entire group of people!
It is one thing to tell people...we terminated because our child had DS and we didn't want to live with that...
completely different than saying...We set our angel free out of the greatest love to ease his suffering.
I know of one poster who tells people her child was dx'd with not only DS but also a seizure disorder, IN UTERO!!! IMPOSSIBLE! You need an EEG to diagnose a seizure disorder.
When my child and others like him are attacked (and spreading misinformation IS a form of attack) I will fight back with everything in me.
As for the "sick and pitiful" comment...I'm not thinking the person I directed that comment at has "a side" I think she is just out for some twisted sense of vengence. and that is sick and pitiful
I do find it curious that your previous blog had "wonderfullifewith7" in the address, and this other "It's A Wonderful Life" blog is a woman with 5 children, who also has Neonataldoc's blog listed as a blog of interest. Just a coincidence?
Purely coincidence I can assure you. I would think that many people have this blog listed as a blog of interest...don't you?
"When my child and others like him are attacked (and spreading misinformation IS a form of attack) I will fight back with everything in me."
Good. So you understand completely that Michelle's latest attempt to misstate the incidence of abortion is an ATTACK, and not just a - ahem - unfortunate miscalculation.
Will you attack Michelle now that she's been spreading misinformation through misreporting numbers in a study about how many late term abortions are performed in America each day?
Or is she just a "doofus" when it comes to math?
Excuse me...your ignorance is showing.
A math mistake hardly constitutes spreading lies and misconceptions.
And personally...I think ONE late term abortion a day is too many!
And besides...her math error may SAVE a child...not cause it to be destroyed.
Care to spell out exactly why you follow Michelle around trying to trip her up? What kind of agenda do you have?
Just curious!
actually, I got several different amounts confused and I am a doofus at math(yep...doofus fits)
I started with one set of numbers and ended with another, because no one agrees, the CDC reports about 12% fewer abortions that Guttachmer does. Also, I was trying to compare the CDCs after 24 week records with AGs after 21 weeks...thats the confusion.
Regardless, if we use JUST AGs records, and talk about all abortions after 21 weeks (viability) the most recent figures for Alan Guttmacher are 1.2% of abortions are done after 21 weeks, with a total abortion rate of 1.29 million. (2001 figures)
http://www.alanguttmacher.org/pubs/fb_induced_abortion.html
That is 15480 or 42.41 per day. (The 16125 was from a different report, I should have done better work there, I absolutely would not want to report inaccurately) I had said 44 per day, and obviously, there are fewer...1.49 babies fewer per day than I had said before. My apologies. Lets say....you get the half a baby, I like mine whole.
Do you think you are being funny? I think you are a very emotionally disturbed person.
"Lets say...." (vicious comments from the Math Wizard)
No, let's don't say that, Michelle. The response which springs to mind is just as vicious and cruel, but you would never in a thousand years grasp that you provoked it, so I'll leave it.
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