Monday, August 07, 2006

Decision

A long time ago, in a hospital far, far away, a woman was about 16 weeks pregnant. An ultrasound showed that her female baby (fetus?) had gastroschisis, a birth defect where the intestines are not enclosed in the abdominal cavity but protruding through a defect in the abdominal wall and are floating in the amniotic fluid. This is a repairable defect, and sometimes the surgeons just need to put the intestines back in their place and close it up, and everything is fine. Sometimes, though, the repairs don't go quite so smoothly, and it may take a long time for the intestines to start working, or some may be lost and the baby left with a short bowel. One good thing about a gastroschisis is that unlike many birth defects, it is not typically associated with other anomalies, such as brain anomalies that can cause neurologic problems and abnormal development. (Don't confuse this with an omphalocoele, a different defect that also has the intestines outside the abdominal cavity, but that often is associated with other nasty defects.)

As was the practice in that hospital, the woman was invited to a multidisciplinary conference attended by the family, a perinatologist, pediatric surgeon, neonatologist, social worker, and genetic counselor. The purpose of the conference was to explain the defect to them and tell them their options: continue the pregnancy and keep the baby; abort the fetus; or continue the pregnancy and give the baby up for adoption at birth. The family decided that they didn't want to take a chance of having a problem child and chose to abort the fetus.

I attended many conferences like this. As physicians we were to be non-judgemental and not tip off the family to our own preferences in the case. Personally, I didn't really like seeing this fetus aborted when I had seen many kids with gastroschisis repaired and live a fine life, but hey, it was the family's decision, and it was legal.

The case headed towards a scheduled abortion but hit an unusual snag. The family was from the Middle East. It was no secret that they valued a male child more than a female. In fact, they led us to believe that if this were a male fetus they would have continued the pregnancy and kept the child. This was too much for one of the perinatologists, who - although she was generally in favor of families being able to abort any fetus they wanted to - tried to stop the abortion on the grounds that it was gender discrimination.

Casea like this were often somewhat discomfitting for me. It wasn't that unusual for a family to decide to terminate a wanted pregnancy because they couldn't be sure the baby would be perfect. Kids with mild spina bifida, mild enough that they could walk, would be aborted. Kids with repairable defects would be aborted. As a pediatrician and neonatologist, I spend a not insignificant portion of my time taking care of babies with defects. It was a little weird seeing them just terminated. Obviously, one's thoughts in these cases are colored by one's thoughts about abortion in general, but that's a topic for another day.

The perinatologist was unsuccessful in blocking the abortion. Hey, it was the family's decision, and it was legal.

30 Comments:

Anonymous Dianne said...

Why not allow the termination? Right now the fetus has few or no cortical neurons and almost certainly has no self-awareness. Why let it be born into a family and society that will not value it? Why cause unnecessary suffering?

2:50 PM  
Blogger Jordan said...

Though provoking...the gender issue is an interesting twist.

3:03 PM  
Blogger SmartBlkWoman said...

It's no secret the we ( meaning humanity in general) is getting closer and closer everyday to outright eugenics. Pretty soon we will all just design our babies in a lab so that we can be absolutely sure of the finished product. You say you want a sandy blond haired boy with green eyes, 5'9 inches tall, and enjoys tennis? No problem! We'll have him made to your specifications by next Wednesday!

As is the case in all colossal screwups, humanity will not see the quagmire it has created for itself by making the right to an abortion for any and all reasons sacrosant until it is almost too late.

10:23 PM  
Blogger Dream Mom said...

Boy, these sessions would clearly bother me. I just don't understand today, in all of our education and sophistication, how women or families can make those decisions, especially after carrying around that baby for four months and loving it. I know my opinion is personal, and may not be popular, but that is how I feel.

I learned so much by having Dear Son that has changed how I view the world. I learned that we all want things to be perfect and to have things they way we want them because in a way, that's how we are raised, to always want the best, be the best and have the best. Sometimes, life happens differently and happens differently for a reason. It doesn't mean that we can't or shouldn't want things the way we do, it just means that when it doesn't, it's not always the end of the earth. I would imagine it would be hard to have that wisdom when a couple is young, with a first born, when all of the hopes and dreams are tied to that newborn. It's too bad that there couldn't be anyone else at that table, that has been in those shoes before, to offer a different perspective and perhaps that would have made all the difference.

10:29 PM  
Blogger That Girl said...

I think it's ridiculous to say that people should have a choice - a choice that is only allowable under circumstances that someone else gets to decide. That is no choice at all.
The whole adoption option is a red herring that gets thrown out in any discussion of abortion (or any kind) to hide the fact that children with disabilities and minorities are the least likely to ever be adopted.
I've also noticed that it is the tendancy of people to say - I have done this, so can you. Everyone is different. It is a lot better for parents to decide to terminate than to abuse their child, either outright or through the many unprosecutable ways parents can damage children they dont really want.
People talking about this issue also seem to have no concept of duality.
I believe it is possible to love your autistic child while wishing there was a cure, love your deaf child and give her coleceal (sp) implants, love your child enough to stop treatments that prolong her life. Love your child-to-be enough to get an abortion.
Accepting suffering and/or death on behalf of someone else is a huge burden best left to the family who will have to support that decision.
I find it ironic that one of the arguements against abortion is that no one would willingly choose to die yet those who choose to die we call crazy and take agency from them.
I dont think there is any way to have this discussion and not discuss abortion. Your underwear really shows in this post because - babies and kids do not get aborted, feti do.

11:52 AM  
Anonymous Anonymous said...

I'm very pro choice but these kind of cases make me uncomfortable. I've heard a few of these stories lately. If not for that test result, that 'fetus' would have been a baby. Sometimes ignorance is bliss. I can't personally understand parents terminating a pregnancy when the baby WAS wanted UNTIL it was found to be MILDY 'defective'. It's sad, makes me wonder what kinds of parents these people are when they have do their 'perfect' child.

5:12 PM  
Blogger Anne said...

Thank you for a thought provoking post. Some studies put the termination rate for babies diagnosed prenatally with down syndrome at 80 or 90%. What happens if (when) we find genes for schizophrenia, bipolar disorder, autism, add, etc.?

Also, I've heard some disturbing stories of parent with a down syndrome diagnosis being pressured to terminate, or at the very least, having health professionals asssume they will terminate since everyone else does. Given very little counselling about the alternatives.

8:01 PM  
Blogger Judy said...

Since I work in a Catholic hospital, we fairly regularly get babies whose parents are sick of the pressure to terminate babies with serious birth defects - and sometimes lethal syndromes.

I'm glad your hospital presents options other than termination. Not all hospitals do - or at least not in a way that seems like an option to the parents. I've heard it repeatedly.

We recently discharged a baby with gastroschisis whose parents were aware of the diagnosis prenatally. AFAIK, they came to us as a first choice and not as a refuge from unwanted pressure to terminate. He was one of the lucky ones who managed to keep all his parts and get them working in a matter of weeks. Sometimes it takes lots longer.

It may be legal to terminate these babies, but it makes me really uncomfortable. OTOH, it seems hypocritical of the perinatologist to be in favor of abortion except when her cultural values are different than the family's.

10:31 PM  
Blogger Awesome Mom said...

I am glad that I was able to avoid a meeting like that due to the fact that my son's defect was not discovered until he was born. I think it is sad that parents choose to abort children just because they are not perfect. It is our differences that add a richness to society.

11:03 PM  
Anonymous Anonymous said...

the primary researched solution to birth defects- it is abortion- the effort of early detection so that abortion can happen earlier.

I watched this time an again and am not satisfied- my preference is to discover causes and prevention --
------ many of our clients would never abort and never have testing and people think that these folks are equally crazy
------------
I would also like you to comment on the testing news story about ultrasound.... not good press right now

11:13 PM  
Anonymous Pen said...

Replying to Awesome Mom; yes, I too am glad that my son's problems were not detected until after birth. Several years afterwards, actually.

I think that any real child will be different to the expectations of the parents. If the parents love the expectations more than the child then trouble will certainly follow. But I still agree with the right to terminate if that's what both parents thought was the best thing to do.

11:49 PM  
Anonymous Another Mom said...

I ended a pregnancy at sixteen weeks last year due to diagnosis of trisomy 18 (Edward's Syndrome). And while I personally would not have terminated for the reason described in this particular case -- my husband and I would have been throwing a big party if the only thing wrong with our girl was misplaced intestines -- I still chafe at the tenor of many of the comments here. Not every family who opts for termination for medical reasons is ignorant, young, immoral, or of the opinion that the only acceptable child is a perfect child. I personally believe in God, have other great (but certainly not perfect) children, and I am far from ignorant about what it was that I did. I killed my baby. And I think it was the right thing to do under the circumstances.

Before making my decision I talked to a perinatalist, 2 OBs, and a genetic counselor about quality of life for an infant with T18. (And I use the word "infant" rather than "person" pointedly, because the median life expectancy for T18 is something like 2-3 weeks.) And you know what? No medical professional ever expressed an opinion on what they thought I should do. They just answered whatever questions I had the guts to ask ... which means that if I'd been less blunt in my questioning, I might have come away with rather different info from the medical team than I did. I'm not sure how great this supposed lack of bias ultimately is, given that. But that's the way it was.

Ironically, it was the pro-life websites that celebrated carrying T18 infants to term that swayed me the most toward termination. These sites detailed the supposedly righteous path, which often included medical interventions such as feeding tubes and ventilators and various surgeries ... none of which ultimatley saved the life of the baby, but usually guaranteed the child would spend all of life in a NICU. Even when comfort care was opted for, "natural" death from severe heart, renal, and digestive track defects sounded so painful and awful.

Ultimately I felt that while carrying a T18 baby to term might have certain perks for me, the mom, (so much sympathy from society, which deemed me faithful and brave for doing so) it seemed like a really crappy deal for the baby. Comparatively speaking, terminating at 16 weeks was painless and merciful for my daughter. Harder for me, socially speaking, but better for the baby. So that's what I did.

If people don't agree with what this particular couple did, then that's one thing. But say "all abortion is wrong" at your peril: You or someone close to you may someday find your words coming back to haunt you if you get a truly disastrous prenatal diagnosis like I did.

12:08 AM  
Blogger WendyLou said...

At 22 weeks, we had a conversation along similar lines. Our little one was not growing.

Now, my concern is that this was not my doctor. I had never met him before and he did not introduce himself and I could not read his badge. He was the perinatologist on rotation again. Plus he had an AWFUL bedside manner.

After asking us what our thoughts on termination, being told HELL NO, he continued to lecture us on Utah law.

That conversation got me making a very upset call to my OB. She was unhappy that he felt the need to discuss this without even discussing this with her.

We did have a indepth conversation with my OB where our options were discussed and we decided against an amnio. I recieved this conversation much better from her. My objection stood.

Had I aborted, I would have aborted a perfectly healthy, yet very small BABY. It ticked me off when medical providers called her the fetus, especially after we had her named.

A very kind Neo from the teaching hospital spent an hour with us talking about options, what to expect with a super preemie, VLBW baby. He asked if we had named her, and since we had, he called her by name the entire session. He did not sugar coat anything. He was honest and truthful about what to expect. His approach showed that he respected us and our choices for us.

I do not understand how a woman could abort a wanted, planned for pregnancy when there are other options to her. It sounds as if she aborted for a fairly minor issue. What if she learned there was a cleft lip instead?

I do have a problem with abortion for gender selection.

12:17 AM  
Blogger neonataldoc said...

Thanks everyone. It's a tough issue. I think anonymous 5:12 says it well: it's the termination of wanted babies with mild defects that has some of us bothered.

Gotta go; no time now to write more about this issue, maybe later.

8:51 AM  
Anonymous Dianne said...

I have a question for those who oppose abortion of fetuses with birth defects on the grounds that it is "eugenic" or out of fear that society will become less accepting of the less-than-"perfect". Suppose there were a non-invasive way to examine an oocyte just before ovulation to determine whether or not it had chromosomal abnormalities and maybe even subtler defects. Would you find such a technology immoral? If it existed, would you find it immoral for a woman who desired pregnancy to delay attempting conception until she had a "perfect" (ie without known birth defects) oocyte? If not, why is early abortion different?

12:12 PM  
Anonymous Dianne said...

I have a question, particularly for those who feel that the parents shouldn't have or shouldn't have been allowed to have the abortion: Suppose there were a way to non-invasively examine oocytes just before ovulation to detect genetic abnormalities. Would making such a technology available to the public, knowing that it would cause some women to defer attempting conception, be ethical? If it were available and a woman who desired pregnancy was scanned and found that the current oocyte contained two chromosome 21s, would it be ethical for her to delay the attempt at conception until she had an oocyte without obvious genetic defects? If either or both would be ethical, but aborting an early fetus with similar defects would not be, what makes the distinction?

12:27 PM  
Anonymous Dianne said...

Gah! Sorry about the almost identical double posts. I've been having computer trouble all day and thought the first one didn't post.

3:58 PM  
Blogger SmartBlkWoman said...

Anne said: Some studies put the termination rate for babies diagnosed prenatally with down syndrome at 80 or 90%. What happens if (when) we find genes for schizophrenia, bipolar disorder, autism, add, etc.?

Most of those fetus/babies will be aborted too. I predict that eventually people will just examine all embryos before implantion for all defects and discard the imperfect ones. Why have a baby with a minor flaw when you can have a perfect baby?

Dianne said: Suppose there were a non-invasive way to examine an oocyte just before ovulation to determine whether or not it had chromosomal abnormalities and maybe even subtler defects. Would you find such a technology immoral? If it existed, would you find it immoral for a woman who desired pregnancy to delay attempting conception until she had a "perfect" (ie without known birth defects) oocyte? If not, why is early abortion different?

I don't think any technology used to detect abnormalities is immoral per se. I just think that eventually we will abort all of the "imperfect" people and take all necessary steps to rid ourselves of any genetically or physically inferior humans. Thus, there really is no point to attempting to make a society accepting and accomodating to people with physical and mental handicaps when in time these people will rarely exist because no one will be giving birth to imperfect babies anymore.

4:57 AM  
Anonymous Dianne said...

SBW: I'm not sure if you're envisioning utopia or dystopia by your tone, but it's unrealistic either way. A fair number of the problems mentioned have significant environmental components. For better or worse, we will always have mental retardation, mental illness, autism, etc. At least, our current technology is incapable of abolishing any of these problems. But you haven't answered the question. Suppose the incidence of Down's syndrome went to virtually zero because of pre-conception screening and people's decisions to avoid conceiving children who might have Down's. Would the society so produced be better, worse, or the same as a society in which Down's was eliminated by early abortion?

8:31 AM  
Anonymous L said...

Why are people including bipolar disorder in with reasons to terminate a pregnancy? I'm bipolar, and my life, though at times difficult, is not an unremitting hell. Most people with bipolar disorder do find decent treatment with medication.

I'm insulted by the person who lumped me into the category above.

9:28 AM  
Anonymous Anonymous said...

"Why are people including bipolar disorder in with reasons to terminate a pregnancy? I'm bipolar, and my life, though at times difficult, is not an unremitting hell."
-----------------
ah yes but my sister's is none of the meds do enough and each "episode" she seems to loose more and more of her faculties --- she has bipolar schizoaffective
-------------------

10:05 AM  
Blogger Becca said...

Why are people including bipolar disorder in with reasons to terminate a pregnancy? I'm bipolar, and my life, though at times difficult, is not an unremitting hell. Most people with bipolar disorder do find decent treatment with medication.

Yes, but it is different from this imaginary norm and is therefore to the unenlightened eye something the world would be better off without. Please remember that most of us with most disabilities or mental health issues of all kinds do not generally feel our lives to be unremitting hell, but foetuses (foetii?) with conditions resulting in the same levels of impairment as what I have are aborted pretty routinely. I'd rate my quality of life as generally somewhere between 'good' and 'great'.

The thought of a world with many, many less disabled people in it frightens me. I think it'd change society for the worse. I generally gag at the butterfly/tornado metaphors but I've seen first-hand the huge, positive impact on a circle of people the life of one profoundly disabled individual has.

6:07 PM  
Blogger SmartBlkWoman said...

Dianne said... SBW: I'm not sure if you're envisioning utopia or dystopia by your tone, but it's unrealistic either way.

I don't think that this new world is unrealistic at all. 92% of babies with down syndrome are aborted. There have been abortions because of club feet and cleft palates also. Sure, there will be a few mentally and or physically handicapped people around due to accidents, cord prolapse at birth, maybe the problem wasn't caught during ultrasound etc., But the truth remains that fewer and fewer women will be giving birth to children with any sort of defect over time.



A fair number of the problems mentioned have significant environmental components. For better or worse, we will always have mental retardation, mental illness, autism, etc. At least, our current technology is incapable of abolishing any of these problems. But you haven't answered the question. Suppose the incidence of Down's syndrome went to virtually zero because of pre-conception screening and people's decisions to avoid conceiving children who might have Down's. Would the society so produced be better, worse, or the same as a society in which Down's was eliminated by early abortion?


Suppose the incidence of Down's syndrome went to virtually zero because of pre-conception screening and people's decisions to avoid conceiving children who might have Down's. Would the society so produced be better, worse, or the same as a society in which Down's was eliminated by early abortion?

In my opinion society will be worse off. We will become less and less accepting and accomodating of people with Down's syndrome and other disabilities, the unique contributions that these people would have added to our society in spite of their condition ( and often because of the condition) will be lost.

2:54 PM  
Blogger Flea said...

Without date stamps, I cannot tell how old this discussion is. At the risk of re-opening the can: With respect, Dianne is wrong about cortical neurons. That is, unless she and I have a different idea in mind when we say "cortical neurons". I doubt it though.

Flea

10:15 AM  
Anonymous Dianne said...

Flea: You may be right. I was going by memory, without checking any references, but I thought that stationary neurons with axonal connections weren't seen in the human brain earlier than about the 18th or so week.

I've also seen the question of whether fetal consciousness is possible given the pO2 in the uterus raised. I'll try to find that article again...it was interesting if not entirely convincing. This paper suggests that consciousness develops around the 30th-35th week, long after abortions for all but the most desperate problems are performed. This study suggests that signs of cortical axonal development (as measured by the presence of a pan-neurofilament marker) first develops around 23 weeks. For whatever this information adds to the debate.

1:27 PM  
Anonymous Anonymous said...

FWIW, the drs. working on it believe we are between 5-10 years from pre-natally diagnosing autism. It isn't hard to guess what the outcome will be.

11:48 PM  
Blogger SteppedOnALego said...

First of all, this is the exact reason in many parts of Canada, we cannot even find out the sex of the baby prenatally. In Eastern Canada, with my first, it was illegal for them to tell me.. should I have wanted one gender more than the other, and I chose to terminate.

Secondly, I have to respond to this comment:
-----------------------------------
L said...
Why are people including bipolar disorder in with reasons to terminate a pregnancy? I'm bipolar, and my life, though at times difficult, is not an unremitting hell. Most people with bipolar disorder do find decent treatment with medication.

***I'm insulted by the person who lumped me into the category above.***
---------------------------

I am sure many people in the "category" you are referring to, would also be insulted... whether it's bipolar disorder, gastroschisis, bilateral cleft palates, Down Syndrome, anything that goes outside of what we sadly consider the 'norm'.

10:56 AM  
Anonymous Anonymous said...

This comment is to the people that oppose aborting the fetus. I am sure that many of you are commenting without really going through having a child inside you with an abnormality that may cause him or her to have a painful abnormal life. In many of these cases some die at birth or in the first year of life. Yes you want to have a baby. You want him to lead a happy life with no suffering. But it is obvious that it wont. Imagine all the pain this baby will be going through. I think before posting comments on situations you haven't gone through you research and really think about it. The doctor said she cared for many babies with defects but she never said she had to take them home and care for them 24/7 and watch them suffer.

2:55 PM  
Anonymous Rachel said...

Hi,
I was just reading the comments and what struck me was the comment that someone thought it was okay to abort a child with Edward's disease because it was not just a case of misplaced intestines. I would like you to hear my story. Although I don't believe in abortion, I often wished that God would have taken my granddaughter home before she was born. She was born with gastroschisis and while she was in the hospital got a lot of infections and NEC was one of them, she died after suffering many surgeries and liver failure. She was on life support three times in her short five months. I loved my granddaughter very much and to see her suffering so much all her life, it seemed selfish of us to have allowed her to be born just to suffer such great pain. She lived her whole life not ever going home to be with familiy or to see a bird fly or even to feel the wind or raindrops on her face. I thought it was inhumane to allow her to live just to suffer and then die. But. . . the doctors assured us that she had only 1% chance of dying and that she would be in the hospital for about 6 weeks. Even then we were asked to disconnect her so in a sense we let her go- so what's the difference?

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2:04 AM  

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