Ignored
Among the many articles and news stories following Gerald Ford's death, I thought one of the most interesting was about his popular wife Betty Ford. National Public Radio aired a story about her breast cancer and her decision to go public with the diagnosis and the fact that she had a mastectomy. That may not sound so unusual today, but in 1974 such openness about cancer and operations like mastectomies was unusual. Instead of withdrawing her cancer from public view, she served as an example for many women and inspired many to obtain screening for breast cancer.
We could use a similar example today, not for breast cancer, but for the problem of babies born at the so called border of viability, about 23 to 24 weeks gestation. What to do with these babies - resuscitate them, not resuscitate them - is a big issue in neonatology yet is rarely discussed in society. I'm not wishing an extremely preterm birth on anyone, but if, say, the President or Vice-President had a child or grandchild born at 23 weeks gestation it could put the issue squarely into the public eye.
I have written about decision making regarding resuscitation of these kids before. Given their low rate of survival (30% for 23 weekers, 57% for 24 weekers) and the high rate of impairments in the survivors ( greater than 50%), is it justified to spend so much money on them? Does society want us to do everything we can for all of these babies? On the other hand, is it acceptable to simply let these kids die without trying? Maybe society would simply say that it's up to the parents, but shouldn't the public at least address it? My personal opinion, as I have mentioned before, is that we are not only justified in resuscitating these kids, we might be practicing age discrimination if we do not, because critically ill adults and older children with the above outcome statistics would without question be resuscitated.
I don't think, though, that we are likely to see society weigh in on the issue, for two reasons. One reason is that most people are not even aware of this issue, and of those that are many are only superficially so. The other reason is that it's a very tough issue, and most people would just as soon avoid discussing it if possible. Even some parents about to have an extremely premature baby try to opt out of decision making, doing whatever we suggest or seem to suggest.
So unless John Edwards or Barack Obama has a child, or John McCain a grandchild, born at 23 weeks gestation we are like to keep resuscitating these kids, paying perhaps a million dollars for medical care in survivors, and it will almost all be under the public's radar screen. We know about heart disease; we know about cancer; we even know a little bit about sickle cell disease. But extreme prematurity is an ethical issue ignored by the public, and it is likely to remain so for a long time.
We could use a similar example today, not for breast cancer, but for the problem of babies born at the so called border of viability, about 23 to 24 weeks gestation. What to do with these babies - resuscitate them, not resuscitate them - is a big issue in neonatology yet is rarely discussed in society. I'm not wishing an extremely preterm birth on anyone, but if, say, the President or Vice-President had a child or grandchild born at 23 weeks gestation it could put the issue squarely into the public eye.
I have written about decision making regarding resuscitation of these kids before. Given their low rate of survival (30% for 23 weekers, 57% for 24 weekers) and the high rate of impairments in the survivors ( greater than 50%), is it justified to spend so much money on them? Does society want us to do everything we can for all of these babies? On the other hand, is it acceptable to simply let these kids die without trying? Maybe society would simply say that it's up to the parents, but shouldn't the public at least address it? My personal opinion, as I have mentioned before, is that we are not only justified in resuscitating these kids, we might be practicing age discrimination if we do not, because critically ill adults and older children with the above outcome statistics would without question be resuscitated.
I don't think, though, that we are likely to see society weigh in on the issue, for two reasons. One reason is that most people are not even aware of this issue, and of those that are many are only superficially so. The other reason is that it's a very tough issue, and most people would just as soon avoid discussing it if possible. Even some parents about to have an extremely premature baby try to opt out of decision making, doing whatever we suggest or seem to suggest.
So unless John Edwards or Barack Obama has a child, or John McCain a grandchild, born at 23 weeks gestation we are like to keep resuscitating these kids, paying perhaps a million dollars for medical care in survivors, and it will almost all be under the public's radar screen. We know about heart disease; we know about cancer; we even know a little bit about sickle cell disease. But extreme prematurity is an ethical issue ignored by the public, and it is likely to remain so for a long time.
posted by neonataldoc at 8:10 PM
42 Comments:
As usual, you make a good point, NNdoc. As a 2 time NICU mom, I will always be thankful for the wonderful technologies and knowledge that today's neonatologists have.........but it seems that the more knowledge and ability to help these babies that exists, the bigger your quandary will grow.
I'd imagine that 10, 15, 20 years ago (and more, of course), you couldn't have had this discussion because there was nothing you could have even done for a 23 weeker, right? Now, the more you docs learn and the better you get at saving smaller and smaller babies, this dilemma just gets worse.
Double edged, sword, I suppose. Innovations like surfactant therapy, medications for PDA, etc saved my sons' lives (they were 29 and 27 weekers, respectively) and that's a miraculous and wonderful thing. It becomes a potentially negative (or at least difficult) thing when that very technology causes one to have to choose whether or not to use it. I don't envy you that dilemma, nor do I the parents of 23, 24 weekers. My youngest was expected to be delivered at 24 weeks, and we were told not to expect him to make it. It was implied that we might not even want to try resuscitation.....and this was 3 years ago. Thank goodness we didn't have to make that decision.
I attended a delivery this past weekend of a 23 weeker who looked more immature than 23 weeks and was consequently provided with comfort care rather than aggressive resuscitation. Our neonatologists (all 3 of them) had each had the opportunity to consult with the mom and her family about their desires for this baby.
The family was provided with the information in your post about survival rates and morbidity and chose, rightly I believe, not to request aggressive resuscitation.
There is another option which is sometimes appropriate. It is not ethically different to discontinue life support than to never start it. Sometimes I believe it is appropriate to make an attempt at resuscitation and to withdraw life support when it appears to be futile. We do that with older children and adults -- and in my unit, we sometimes do it with preemies. It is heartbreaking for the families, and for us, but sometimes it's the right thing to do.
I may be off on a tangent here but I think the question is not whether the decision to resuscitate should be taken out of the hands of the parents or about economic issues, but whether the media should show a more realistic portrayal of the outcome. And I think you are right in that it is only when a high profile person has an extreme prem that perhaps a more realistic portrayal will come through the media. Unfortunately, here at least, there is a lot of media coverage about the miracle extreme prems who escape unscathed. The minority is made out to seem as if it is the majority. And I wonder what message this sends to prospective parents about viability.
As a parent, you are always hearing about your sister's butcher's first cousin who had a 23 weeker, and he/she turned out fine (only to find out once the story is traced back to the source that the kid was a 32 weeker). You rarely hear about the babies that didn't make it.
Great post once again.
This is, indeed, an issue that I wish we had had more information about. My partner went into preterm labor at 23 weeks, 0 days this past June. The neonatologists expected her to deliver that night, but fortunately we hung on for four more days. During those four days, we met with several neonatologists, and we weren't certain what we were going to end up doing. It helped that they were girls and that both were running on the larger than average size given their gestational age (they ended up weighing 590 and 580 grams at birth). I think that, once Baby A was delivered and ended up crying and with a one minute APGAR score of 9, we had to proceed with doing everything we could at the moment to save both her and her sister (who had mucous in her airway at birth and hence required resuscitation). We had a pretty traumatic first several weeks and we lost one of our twins (Baby B) at 18 days, largely because they couldn't perform surgery to close her PDA until she was cleared of infection (this was true of her sister, too) and she took a turn for the worse in the meantime. To make a very long story short, after 121 days in the NICU, our surviving twin is home and is doing miraculously well. She is now 3 months old corrected (about seven, actual) and is amazingly alert, doing everything she should be for her corrected age, etc. It helps that she had a very small Level 1 IVH and few issues other than quite immature lungs. Of course, we did not know this from the outset, and it's hard to know what kind of course to take. But it's hard to not intubate a baby who comes out crying, and I am awfully glad now that we did. But my partner and I had no idea of what we were getting ourselves into, and we've spent enough time in the NICU to know that we did not have a typical course with our surviving daughter. And both of us wished that we had known a whole hell of a lot more about preterm labor (that it could happen that early, for example); maybe we'd have been able to avert such an early delivery that way. And, yes, it will take a spectacular example of this to make people aware of the fact that these things happen. The Kennedys loss of their son put chronic lung disease on the map, and probably increased the research dollars available to develop things like artificial surfactant, for example. Anyway, thanks for your post about this. Your blog is always enlightening.
Before the viability border can be addressed, I think the simple realities of prematurity need to be brought more to light. Everyone in our family thought that premature simply meant "small", and even after everything we went through people still didn't necessarily understand. It's stunning how much ignorance is out there about prematurity - especially when the rates keep going up.
I think, if prematurity was more present in the media, then issues like viability and complications and long-term complications would also come to the limelight. Maybe some day...
If Elizabeth Edwards were to have a premature child, she might actually be open about it -- she's publicly stated that she conceived her two youngest through infertility treatment (very probably donor egg IVF pregnancies, given that she was aged 48 and 50). I wouldn't look for her to have another child, though, as she's 57 or 58 now.
Amen brother
i think you have agood point. look at how much neonatology evolved after the birth and death of patrick bouvier kennedy.
i struggle sometimes with the decision making process of who and when to resuscitate, now that i have my own 24 weeker. he is definitely one of the lucky ones but when he was born, of the 3 24 week males born that week, he was the sickest. yet he had the best outcome as one expired at age 8 months and one remained in the hospital for 2 years. no one could have predicted that. i'm glad he bucked the odds and will celebrate his 5th brithday next week..
at the same time, as a nicu rn, it is so frustrating to hear the well meaning visitors share that so and so had a 2 pounder years ago and he is okay, yada, yada, yada. i also believe that media in general really does a disservice for the people with "preemies" born weeks early who look like trm kids and go home after only a few days. or even the news pieces on the tiny babies. they gloss over the realities and focus on the feel goodness of the story. a reporter in our town did this when he wrote a piece about our son last year.
it's a tough call definitely.
i like the documentary little man a lot as it doesn't gloss anything over. if only this reality could be communicated better to the lay people.
Dick Cheney's daughter is pregnant. If, all the dieties forbid, she should have a premature infant, she might be open about her experience and decisions. Or maybe not. She's taken so much crap already from the media simply for conceiving maybe she's tired of it and would rather be left alone.
My personal opinion, as I have mentioned before, is that we are not only justified in resuscitating these kids, we might be practicing age discrimination if we do not, because critically ill adults and older children with the above outcome statistics would without question be resuscitated.
One comment on this statement: I don't think it's as simple as you make it sound here. Many critically ill adult patients are not resuscitated. Almost all adults with serious illnesses are given the opportunity to sign a "do not resuscitate" order and many do. Critically ill adults who are unlikely to survive their illness are also sometimes offered hospice or comfort care instead of continued aggressive measures that seem likely to only prolong their suffering and not save their lives. It depends on the situation, the patient's condition, and the patient's (or the family's) wishes. I don't think that it's age discrimination to look at premature newborns in the same way and consider whether resusciation and aggressive treatment are appropriate on a case by case basis. (Though I think your general point that we, as a society, give up on these infants too easily is a good one.)
In August of 2004, at 23 weeksm I delivered one twin born alive at 1lb, 2oz.. before her birth, I was told by the neos at this particular hospital "we don't recommend using heroic measures on a 23 weeker, but it is ultimately your decision".. I was not informed.. heroic measures were not taken and Mercy died 10 minutes later in my arms... four days later, her twin sister was born at 1lb, 3oz and with the same ideals that these neos had given us, Grace died in my arms 20 minutes later.
When I got home from the hospital after recovering.. I began to research and this is where I discovered that they actually did have a small chance at surviving... imagine my disappointment and hurt.
You are totally correct... we, the public, needs to know exactly what situations exist when it comes to extremely premature infants.. March of Dimes shows the good sides of prematurity, but what about the bad?
Good! I don't want anyone to come and tell me to kill my baby. I hope it stays under the radar.
I don't think people ignore the problems associated with prematurity--they just want to have hope that maybe, just maybe, things will be okay.
(Incidentally, I don't hold Elizabeth Edwards up as a poster girl for disclosure. She has been fairly vague in her acknowledgement of having received "fertility treatments" and has not copped to using donor eggs. Thus, she continues to be held up as a model of a woman who became a mother late in life with a "little" help, which is just not true.)
A co-worker of mine has two kids, both micro-preemies. One of the two is profoundly deaf but otherwise completely normal and healthy; the other (who was a 23-weeker) is hearing-impaired but otherwise completely normal and healthy. Both are functioning, productive adults.
And the mom's (my co-worker's) job? Sign language interpreter!
I'm with you, ND.
My only beef is with those obstetricians (and unfortunately they exist) who are a little too eager to get the babies out of the womb before they're necessarily ready, because then the responsibility for their care shifts over to the likes of you.
what an awesome blog.
30 years ago, babies born that early didnt have ANY chance of survival. It has only been by pushing the enevelope on these children that enough has been learned to increase their chances of survival. However all parents should be fully informed of all the the possible complications that may arise from recusitating these kids.
I am delighted to have discovered your blog! I think a dialogue between neonatal professionals and parents is extremely important.
I am the mother of a 31-year-old 29-week preemie (CP, MR, autism, severe vision impairment, hydrocephalus),I have also worked as a consultant to several large follow-up studies (Soroj Saigal's in Canada, and the PORT project, a multi-national study of school-age outcomes).
I have several comments.
Re: the "age discrimination" argument
When asked their preferences for life saving care for themselves, most critically ill adults do *not* want aggressive treatment (such as those given in ICUs and NICUs) in exchange for a high probablity of impaired survival. (Fried TR et al. New England Journal of Medicine. 2002;346:1061-1066.)
Both my parents were careful to make strict living wills after seeing the medical ordeals to which their premature grandson was subjected in the NICU and beyond. I have done the same for myself.
RE "mild" disabilities.
I want to support Stacy who posted about the so-called "mild" impairments of prematurity.
"Learning disabilities" in preemies are not, as in most full term infants, single areas of learning difficulty , but are, instead, pervasive cognitive deficits, often co-existing with behavioral/psychiatric disorders.
A national study from the Netherlands of <33 week preemies found that only 10% had been diagnosed as handicapped before school age. However, by adolescence, because of the learning, psychiatric, and other "mild" problems, 40% were not expected to live independently as adults.
(Walther et al.Early Human Development 2000;59:175-91.)
At the last Hot Topics in Neonatology Conference, Terrie Inder reported that 75% of preterm infants have significantly abnormal brain scans on discharge from the NICU. That is, they score over 8 on a brain-damage scale from 0 to 15. She is particularly worried about the psychiatric implications, as am I since so many of our children are being diagnosed with autism and schizophrenic tendencies.
Anyone who would like to learn more about our children's lives is invited to the NAROF site at Yahoo.
Helen Harrison
Helen1144@aol.com
Author, _The Premature Baby Book_ St. Martin's Press, 1983
Author, The Principles for Family Care_Pediatrics_1992;93:643-50).
I agree there needs to be greater discussion and openness about the realities and dilemmas of extreme prematurity. I too wish I had been much better armed with information when facing the delivery of my 23 week old twins (who both died shortly after birth). We were lead to believe that their chances of survival were so low that resuscitation would be more of an exercise in cruelty than an act of faith. I would like to see more universal protocol guidelines so that parents of extreme preemies will all get the same information and statistics (with some variation for hospital stats and survival rates) when trying to make the most loving and ethical choice for their baby.
However, the point I would like to add here is along the lines of what dianne said. You have made the comparison of treating extreme preemies to the treatment of critically ill older children and adults before, and I have to agree with dianne that the comparison is not always "apples to apples" so to speak. You make it sound as though the question is simply about the odds of survival. Certainly if the dilemma was whether to perform potentially life saving treatment, with 30% or better odds, then there would be little question. But to put it in perspective, and in fairness to the parents of extreme preemies who have faced these questions, imagine a doctor told you this: "I'm sorry Mr. Doc but your condition is life threatening and there is a better than 70% chance that no matter what we do, you will die anyway. We can try to save your life but we will be leaping into the unknown. You will very likely spend weeks, to months, to years in the hospital, with limited contact with your loved ones. We have no idea what life saving measures we will need to take, but there is a good chance they will be invasive, aggressive and possibly experimental. If you do beat the odds and survive, there is a better than 50% chance you will be mildly to severely disabled. There is a good chance you will suffer from multiple disabilities, and may never be able to live independently. These disabilities could range anywhere from a diminished learning capacity, to respiratory difficulties, to blindness, deafness, cerebral palsy or mental retardation, or a combination of any of the above. We have no way of knowing what your outcome will be. Your other option is to spend what time you have left in the loving care of your family and we will do whatever we can to make you comfortable."
That doesn't make it sound quite so simple does it?
To all readers, please be very careful about passing judgment if you yourself have never been faced with these kinds of horrific decisions.
Maureen Hack just published a very encouraging study in Pediatrics this month demonstrating what many of us in neonatology thought to be true anecdotally:
There is a substantial improvement in neurodevelopemental outcomes in the smallest premies over the last decade. This improvement correlates with decreased use of postnatal steroids, improved supportive care and increased antenatal steroid use.
My point is that yes, things are bad in Europe where they don't try and save this population aggressively; yes, outcomes for current survivors reaching adulthood are concerning; but it's a moving target and to use old data is just as misleading as to tell expectant mother that there is little hope of an intact outcome.
Parents need to be informed and when they're able and it's appropriate, they should be allowed to make decisions about limitation of care (certainly < 24 weeks at this point in time and some would even argue < 26 - although I would not). Unfortunately, when they can't (which is often the case) we must err on the side of saving life.
I have tried to read all the comments on this very interesting topic, but fear for my blood pressure! I would agree that this is a huge problem - I am less and less sure that it has any solution. And as for a debate, the only result would be the polarisation shown in the comments. Like one of your commenters, I have a 30 year old, severely disabled ex-premmie, born at 34 weeks. The observation that obstetricians are eager to get these babies out and hand them to NICU made my eyes pop. My "problems" are the consequence of the exact opposite - leaving her in situ too long, because the technology to keep her alive outside the womb was too primitive in those days. I also find myself appalled by long term "psychiatric" problems being put down to prematurity. Are outcomes like schizophrenia really physical, or social? Is a statistical connection sufficient reason for non-resuscitation? This "problem" doesn't HAVE a solution - babies survive to reasonable lives who "ought" not to, who appear to have had little hope, others who have a more auspicious start end in disaster. Personally, I believe no-one has the right to decide for her (or for me) the quality of my daughter's life. If I'd had a crystal ball when she was born to see into the future, I still have no clue what would have been the "right" decision. I hate it when lives are valued in terms of "cost", while acknowledging it has to be a factor. Basically, it is too bloody difficult. To live with a damaged child is tough. To live with a "normal" child is tough, too. I don't like the idea of people playing God, decisions have to be made. No "debate" can reconcile the points of view of people who regret "allowing" their child to live with disability, and those who were "persuaded" to let them die.
Very thought provoking post.
It was a very hard time for us when we had a 26/27 pregnancy with a baby weighing less than a 23 weeker. Even though I had a 34 weeker, she still was a micro preemie.
I have posted on your blog about how we met with a Neo and he did a wonderful job talking with us about our choices and options and outcomes.
I'd never wish that on anyone. However since it happens to EVERYONE, it is sooner or later this will happen to a close family member to a person in power. I'm not wishing this on anyone, but a new generation of the royal family is about to start marrying and procreating. I hope when a high risk pregnancy/micro-preemie happens to one of these people, they are in a place to come forward about this and help make changes.
I believe it is because this did happen to the child of JFK that we now have surfactant, cpap, better ventilation, etc. Patrick Bouvier Kennedy was born weighing 4 pounds 10 ounces, much more than my 2 pound 13 ounce baby. DD weighed less than he did at birth when she was discharged home. He was born at approximately the same time as my baby, gestationally. According to wikipedia he was 5.5 weeks early, my daughter was born at 34 weeks, 2 days.
Why did my daughter alive, when the child of the president of the United States died? Advances in medicine. He died of RDS, according to Wikipedia (which is always accurate, I know. I had steroid shots, which were not available to Jackie. My DD had CPAP for a bit, a tool not available to Patrick. Had she needed it, and she almost did, my DD could have received a dose of surfactant. Poor Patrick brought this to the limelight. I wonder what advances we will be talking about in 30 years, perhaps an artificial placenta?
This is how things happen. Think about what happened to AIDS acceptance and research after Magic Johnson announced his status. How about stem cell research with the death of President Reagan and the Parkinson's diagnosis of Michael J. Fox and the paralysis of Christopher Reeve. I am amazed and awed when people use their fame for good to help others. My BIL has directly benefited from some of the research and treatments derived from the Christopher Reeve foundation.
I hope if this crisis does happen to someone with fame, they can use their experience to help others and increase awareness.
http://en.wikipedia.org/wiki/ Patrick_Bouvier_Kennedy
To ex utero:
I haven't seen Maureen Hack's latest study yet, though it would not surprise me to learn that reducing exposure to neurotoxic steroids would reduce the severity of some of the outcomes.
Nevertheless, even in the era of reduced stroid use, the latest data from the Vermont Oxford Network is alarming.
3,855 ELBW infants born from 1998-2003 were evaluated. These children (mostly in the US) were born at a time when the dangers of steroids were widely acknowledged, and presumably, reduced.
Severe handicap (at age 2) was defined as : inability to walk, CP, PDI <70; and/or MDI<70; vision loss both eyes and/or; and/or hearing loss requiring amplification.
Slightly over 30% of 26-27 weekers were severely handicapped. 42% of 24-25 weekers;55% of 22-23 weekers 100% of those born <22 weeks.
To put this in some perspective, it is not at all clear to me that our son would have met the criteria for severe handicap at age 2 -- he walked (sort of), talked (sort of), had one good eye, and no hearing loss. No one ever mentioned the term "cerebral palsy" to us -- at least until he required heel cord surgery at age 8.
But at age 31 years our son is too disabled to be without constant one-on-one supervision for his own care and safety.
You say that outcomes are worse in Europe (Netherlands, presumably) because they do not try as hard to save the babies.
In fact, outcomes from the Netherlands are better than ours, as was determined by PORT Project comparisions of US cohorts born in the same era with those in the Netherlands (as well as those in Germany, Canada,and Jamaica). Other reserarchers, (such as Escobar et al.Br. J. Ostet. Gynaecol.1992;99:1-3) further confirm this finding.
The US has a *significantly* higher rate of severe handicap detectable in early infancy than does the Netherlands.
And ee, in the US, simply do not know what our stats for independent living are because preemies are not given the same long-term follow-up here as they are given in countries such as the Netherlands.
Remember only 10% of the Dutch cohort was considered severely handicapped in early childhood. But "mild" problems, detectable only later in childhood and adolescence, left 40% unable to live independently.
And now, according to the latest Vermont-Oxford data, we have a 30% rate of severe disability for current 26 to 27 weekers! I am frightened for what the future holds for these babies and their families.
To Claire: Unfortunately, the connection of prematurity and/or low birth weight to schizophrenia has been well- researched and confirmed repeatedly. The evidence clearly points to a physical basis for this, and other,psychiatric disease.
MRI scanning of adult schizophrenics show similar brain damage to that being found now in 75% of preemies (for example, enlarged ventricles). Other types of psychiatric disorders are also thought to be related to the many brain abnormalities that most preemies have when they leave the NICU.
About 1/2 of chilren born below 33 weeks have been reported to show psychiatric symptoms by adolescence.(Indredavik et al. Arch Dis Child;2004:89:F445-450)
How this will play out over time is not known, but, at the NAROF forum and preemie-child list, the parents are giving us some hints.
There are, for example, many diagnoses of autism among school age preemies on our lists (the symptoms were called "sensory integration disorder" or developmental delay in early follow-up).
The school systems are also reportedly having a very difficult time trying to deal with the influx of NICU graduates.
I think parents and the public need this information.
Helen
It has occurred to me in thinking about this post, and the responses, that not only does our society ignore these extremely premature babies, but it ignores their parents too. In one breath we are arguing for the value of these tiny, barely viable lives, but when those lives are lost they are suddenly viewed as less important, less worthy of being grieved than that of an older baby or child. The loss of an extremely premature infant is given almost no weight at all in our society, often by the very same people who advocate loud and long for performing life saving measures on these little ones. As long as we can keep them alive then it seems their lives have value, but if their fragile bodies can no longer hold onto life then their deaths are viewed as little more than an unfortunate incident.
I was fortunate to have extremely compassionate nurses with me during the brief lives and then deaths of my twins, but the OB who delivered them never once expressed any sympathy or compassion for our loss. For my subsequent pregnancy I was under the care of a highly specialized perinatology team, in the hopes of preventing another preterm delivery. Out of the 6 doctors I saw during my pregnancy, only 2 ever acknowledged in any way the significance of our experience of loss. There was one doctor who even told me that it was just a "twin thing" and that to my body it was essentially a "non-event." We may not like talking about the ethical issues surrounding treating premature babies, but our society doesn't like talking about grief and infant death either, and unfortunately all of those issues go hand in hand with one another.
Anyway, yes, our society ignores these extremely premature babies. But we also need to think about how we treat the parents of these babies when the outcomes don't fit the "miracle stories" we are all so fond of.
NeoDoc, sorry to barge in, but I'm curious about something related to survival/disability stats with micro-preemies, and I can't find any studies... I thought I'd ask you if you know :) (I'm not a medical professional, just curious, so I can only access whatever's on google :P)
Are there any statistics available about survival and disability rates that differentiate between premature delivery due to pre-exising health issues with the baby and premature delivery due to unforseen event having to do with the mother/external circumstances etc?
And, are there any stats available about SERIOUS disability for micro-preemies? It's my impression that when people quote "50% will be disabled" or whatever, they lump in things like residual tremor, sight or hearing impairment etc... I'm interested in how many would be left with health issues meaning they would more or less be dependent on a carer for life.
I'm not trying to make a point about anything here, like I said I'm genuinely curious and I can't find information!
All the best,
Anna
PS: Excuse any spelling mistakes, english is not my first language.
Thanks, all, for the good comments. I'll probably write a post in the next few days regarding outcomes of premies, because that subject seems to take up a lot of the comments, although it wasn't the main point of the post. Regarding my statement about age discrimination, please see my posts of June 20 and 22 for my thoughts on that. Although adults with a poor prognosis might not want aggressive treatment for a condition, a 10 year old who comes to the emergenmcy room with a disease with a 30% chance of survival is resuscitated without question. The same is not true of 23 weekers.
Helen Harrison, welcome to my blog! It's great to see your comments. For those of you who do not know her, Ms. Harrison has been a prominent spokesperson, from the parents' point of view, on many neonatal issues.
Anna, you write very well for someone who's first language is not English. I'm not aware of specific data about outcomes of babies born prematurely for different reasons, although there are some data about growth retarded kids. As far as what major disability means, you really have to read the specific study for their definitions. I think many studies think of severe disability as cerebral palsy severe enough that one cannot walk or walk only with great difficulty; mental retardation (IQ less than 2 standard deviations below normal); blindness; and deafness.
Clearly, I underestimated Elizabeth Edward's age. I'm guessing she doesn't mind.
I'm sorry I cannot respond specifically to all the comments; they are very good, and I appreciate them all.
A few have mentioned that the media should take a more active role in accurately portraying prematurity. Amen! My blood boils every time I see an infant, just released from the NICU, and the parents spouting off how their child is perfectly normal. I wish that was the case.
I was involved with a very well known charity group that has now taken on prematurity as their campaign. Since my daughter was our local ambassador, I gave many speeches. Although the media (newspaper, TV, radio) were all always in attendance, guess how many times I ended up in the media... NONE Why? Because I gave an accurate portrayal of what prematurity is really like. And, much to the surprise of many (because of my strong views), our daughter is one of the luckier ones. They all loved to use her photograph. She is beautiful and free of any outward signs of her early birth (besides the fact that she is incredibly thin). But, they would not print my views. Once, I was interviewed for a spot on the news. I kept it short and factual. The next person they interviewed had a 23 weeker who was 2 years old. The mom talked about how her child was going to be fine because she was a fighter. I didn't make it on TV-no surprise there.
In November 2005, I had the pleasure of attending a seminar for neos and NICU staff. Dr. Maureen Hack was a speaker and did a great job of explaining her most recent, highly publicized, study. Not one person asked a question. Not one. I saw many of them rolling their eyes. It made me angry that the very docs that are saving preemies and telling parents that their kids will be ok, were ignoring the research that should have made them re-think their every move.
So, prematurity should be more accurately portrayed... by who? Will the docs speak up? When us parents speak up, we are ignored. I've "known" Helen Harrison for a number of years. She is an intelligent, accomplished woman and even she gets ignored.
The long term effects of prematurity are real. The serious mental health issues of our so called miracles, are real. There are many adult preemies who can attest to this also. If you looked at my daughter, you may not be able to tell that she was a micropreemie.(www.caringbridge.org/il/paige) But, sit with her for a moment. Ask her about the voices she hears. Ask her about how they tell her to kill people. Ask her about how they tell her to hurt herself. She'll tell you all about them because she wants help. Do I worry that my incredibly intelligent daughter will never live independently... you bet!
Neodoc... I am thankful that you raise these issues. We all need to learn from each other.
hey neonatal doc. i recently started a blog with the goal of getting some of these ideas out into the public arena as well (among other things) i'm impressed with the responsed that you got on your post. how have you gotten so many people involved in the discussion? i'm having problems getting much attention so far. If you get a chance, check out a couple of my recent posts. i'd be interested to get some comments from you.
The unease I felt when I started to read this comments is in danger of turning into full scale paranoia. Living in England, this is the first I've heard about a "link" between prematurity and schizophrenia - and I have just done some quick research. This may not be the place to pursue this, but I don't know where else is. My original thought that a "debate" would be polarised; now I am even more certain of it. Stacy and Helen Harrison may speak as parents - even "for" some parents - but not for me! Yes, the stories of these "miracle babies" beg a lot of questions. Yes, it can take a long time for the full effects of damage to become apparent. So? What cut off date do you have in mind? What should be said/done? And schizophrenia? I doubt it is a risk worth high-lighting, and a very, very dangerous connection. My daughter is not "normal". Her behaviour is eccentric. It would be only too easy for a lazy (or imaginative) doctor to lay the catch-all label of schizophrenia on her, because she does not "fit" into the easy categories, and "Care in the Community" here in England is appalling. It is an accepted fact, this side of the Atlantic at least, that black people are far more likely to be given this devastating label than white, because it is an "easy" way of dealing with problems that are definitely social in origin. There are doctors, and have been for a long time, who think that schizophrenia, or at least its diagnosis, is highly problemmatic. If a debate, and "speaking up" is to lead to the correlation between prematurity and schizophrenia being taken as a given, then for God's sake, lets all keep quiet.! Developmental problems could easily lead, as I have said above, to major MIS or OVER diagnosis, and that is terrifying. Some premature babies may, in addition, get additional mental health problems, as some premature babies will get cancer and heart disease, and Stacy, you have my heartfelt sympathy and best wishes. But the lives of our children are perilous enough, and they suffer enough from ignorance and prejudice about their behaviour - don't let this one get on a roll! Would you feel better if the “miracle baby” stories were replaced with sensationalist “another drain on resources and potential Hannibal Lector saved today”? Because it wouldn’t take much!
NeoDoc:
Thank you for the kind words of welcome!
However, I do think I should point out (as per Claire's statement) that I do not claim to be the voice of all NICU parents, by any means.
I would also like to assure Claire and others that I strongly support the right of informed and empowered parents to request and expect full treatment for their micropreemies.
However, I also strongly support parents who opt for palliative care or no resuscitation for their micropreemies. Knowing what I know now, I would personally opt for palliative care if I were to become the parent of micropreemie (unlikely at age 60).
I have gone back to the June discussion and reviewed some of the "age discrimination" argument. I have a different perspective on this. I think children of all ages are "discriminated" against by being deprived effective parental advocacy in their medical treatment.
Children, of all ages, are unable to refuse aggressive treatment for themselves that they may personally consider being worse than death. Their parents, at risk of being branded "child murderers," are unable to call a halt to whatever it is that intensivists want to do.
Instead, children (and their parents, who must pick up the pieces) are at the mercy of an ever expanding life-support technology and their physicians' motives in using it.
Whether I were a 24 week gestation infant or a 10 year old child, I would not personally agree to undergo treatment identical to DR resuscitation and NICU treatment for micropreemies, treatment which I now know to be highly experimental and damaging in its own right (eg. steroids, ventilators) and excruciatingly painful and protracted (to the point that the pain itself causes brain damage.) Especially since the results, more often than not, are a lifteime of medical suffering and dependence.
I think if parents were fully and honestly informed (if, for example, they could all listen to Hot Topics in Neonatology or SPR each year, as I do, they would be far less likely to want neonatal resuscitation.
However, if they decide to go with treatment that is fine with me as well.
To Claire: Whatever we choose to call our children's "eccentric" behavior, they will still have this behavior, and will still have all the problems that come from being unable to "fit in." Again, all too often, it leads to an inability to function independently in society. That, to me at least, seems a severe handicap.
The difference in viewpoint between my view and Helen Harrison does highlight the polarisation I fear. This debate is not an ethical one, it is a question of philosophies. Helen, I respect and understand every point you make. To make a personal decision not to prolong a life that is or could be painful and unrewarding is a valid decision – provided that the information on outcomes is certain. Painful, untried and experimental treatment with a highish failure rate is worrying. But here is the point: our views have been formed from different perspectives. My daughter is brain damaged because, thirty years ago, my early onset pre-eclampsia meant that she could not be “born” until 35 weeks in the absence of good neonatal care. Now, that frontier has been pushed back, and many children who would’ve died stand a good chance of surviving. Yes, uneasiness about how far that frontier can be pushed is a problem, I would not argue about that. But Neonatal Doc daily highlights some of the other ethical dilemmas involved, which do not simply apply to premature babies. As a society, are we to fail to resuscitate a full term infant whose mother is inadequate? There is a high chance that that child will not “fit in” to society 20 years later. It is this question of “fitting in” that causes me to be horrified about including mental illness into the picture. My daughter has had 30 happy years. She doesn’t much mind not “fitting in” to a hard and acquisitive society. Her world view is narrow, and full of pleasures. This may well change, once we are gone. And as her mother, the road has at times been hard – I’m not sure I “fit-in” either. Is that sufficient reason to say Do Not Resuscitate? Frankly, I don’t know, but I am fearful. The practical, hard-headed view of the lives of disabled people can be difficult to refute but is full of dangers. At birth, I was told my daughter was OK. A year later, I was told she “might walk, might go to school.” (She did both) These doctors had little to go on but statistical probabilities, and actually, didn’t have a clue. What basis is that for making such decisions?
Claire asks about the basis for decisions.
First: The absolute certainty of long, painful, arduous, experimental, iatrogenic treatment.
Second: The high probability that the care might be futile in terms of survival (micropreemies)
Third: The extremely high likelihood that a healthy and independent life will be impossible, despite all the pain and damage that has been inflicted to salvage the baby.
Four: I also wonder about the bigger picture. How can any society deal with this? How can a collapsing health care system and a school system in shambles cope with our kids? See for example: http://www.aasa.org/publications/saarticledetail.cfm?ItemNumber=2548&snItemNumber=950&tnItemNumber=951
How will these children be cared for as adults?
There are also other issues that no one talks much about, but which worry me whenever I set foot in a NICU/PICU or ICU. These babies are like petri dishes culturing ever-more antibiotic resistant strains of lethal bacteria that threaten all our lives. I have spoken to epidemiologists who share this worry, and who tell me that many of the new strains of microbes they investigate seem to originate in the NICU.
Then there is global warming. The "carbon footprint" of a technology-dependent child is huge. Can we as a society and a planet sustain this (to me) incredibly counterproductive and widespread use of medical technology?
But most immediately I worry about families like my own. How long can we be expected to do the impossible? Who will care for our children when we are no longer here? How much do we have to sacrifice, in terms of damage to other siblings, the inability to have other, healthy children or the time to have a career. How much of our own life and health must we sacrifice to "validate" other people's vague, idealistic, or self-interested notions of "disability" and "discrimination"?
Our son, Edward, is 31 years old. He survived with multiple disabilities that have left him unable to live independently -- or even leave the house without our assistance. Some days he is happy and pain free.
Other days, and today is one of them, he is not, and I fear we are in for another surgical marathon. He has had countless hospitalizations and more than 15 "surgical marathons" as I call them . Some go on for years, usually in the attempt to correct the damage inflicted by previous surgery. As an example, we spent most of 2004 at UCSF in and out of intensive care with small bowel obstruction -- adhesions from his previous shunt and neonatal surgery. Once again, he was on CPAP and TPN, NG tubes, and he very nearly escaped the ventilator -- it was almost like old times in the NICU. Except now he weighs 170 pounds and is too retarded to understand that all this is "for his own good." Watching an adult/ child tied to a bed howling and whimpering in pain and fear, watching blood gush from his mouth, hearing him scream piteously (despite sedation) while the ER docs make numerous vain attempts to insert an NG tube -- this is downright inhumane! This, all too often, is his life.
Unlike our time in the NICU, the staff in the adult wards are delighted at our presence by his bedside 24 hours a day because they know the hospital does not have the staff or expertise to deal with patients like our son.
But I am 60 years old with serious health problems of my own that go neglected for years because of our son's relentless medical complications and the problems of everyday care. My husband is 65, also with serious problems, some of which, I feel certain, are worsened by the stresses of caring for Edward. We have nothing anyone else would call a real life or a real marriage. We work in shifts.
My husband and I have chosen to care for him at home rather than turn him over to an institution, as some neonatal specialists I know have done with their own disabled children. No one can have a demanding career of any kind, particularly neonatology, and still deal properly with a child like this.
And yet, I know many families whose prematurely born children are far less "disabled" in the classical sense, the sense that is talked about in NICU follow-up studies. And yet their lives are even harder than ours.
Some of their children have autism and/or schizophrenia.
I do not understand why you are so upset by having their brain diseases given their proper labels. Or why you think parents like myself should not speak up about these issues.
Helen
A Celebrity Preemie!
Bacharach-Dickinson daughter dies Sat Jan 6, 4:16 AM ET
Nikki Bacharach, daughter of Burt Bacharach and Angie Dickinson,
committed suicide, the songwriter and actress said in a statement
Friday.
Nikki Bacharach, 40, suffered from Asperger's Disorder, a form of
autism. She killed herself Thursday night at her condo, said Linda
Dozoretz, a spokeswoman for the family.
"She quietly and peacefully committed suicide to escape the ravages
to her brain brought on by Asperger's," the statement said.
Nikki Bacharach died of suffocation using a plastic bag and helium,
said Mike Feiler of the Ventura County coroner's office.
Born prematurely in 1966, Lea Nikki Bacharach studied geology at Cal
Lutheran University, but could not pursue a career in the field
because of poor eyesight.
"She loved kitties, and earthquakes, glacial calving, meteor
showers, science, blue skies and sunsets, and Tahiti," the statement
said.
Nikki Bacharach was the only child of Burt Bacharach, 77, and
Dickinson, 75, who were married from 1965 to 1981.
It was the second marriage for both Bacharach, the Oscar-winning
composer of "Raindrops Keep Falling on My Head," and "What the World
Needs Now is Love," and Dickinson, star of the film "Dress to Kill"
and the TV show "Police Woman."
Bacharach has three children from other marriages.
OK, Helen, we are never going to agree, so let us agree to disagree. The first three of your points I have no comment on, because I do not have sufficient information at my disposal, and you clearly do. You worry about whether society at large can cope, I worry about a society that is hostile or inhospitable to our children. You seem to fear that the number of disabled adults will increase - maybe you are right, but I would've thought that pre-natal diagnostics and genetic counselling would mean that this is not necessarily the case - you may have the figures, I do not. Your experience has been very hard - and to watch a child suffer lengthy pain and distress is truly an unbearable experience. My daughter has not suffered in this way, and that colours my view. I, too, am aging, and do not see myself as living in some sentimental dream world, I just believe that my daughter's life has been as worth living as anyone else's, possibly because I do not see any life as coming with a guarantee. I can appreciate and respect your viewpoint. I cannot share it.
Fitting in . . . or not. Due to serious mental illness, cognitive disability, disfiguring CP, or other disabilities or behaviors.
This may at times rise to the top of the heap of grieving experienced by parents of kids with disabilities. Don't underestimate the level of
chronic grieving a parent may go through when her child has no friends; when other kids actually seem fearful of her child. (Thank you for speaking up for parents, Lori!)
Who will take an interest in and advocate for our children when we can no longer do so? Who has a bond with them RIGHT NOW? Very few besides parents and professionals. I repeat---they do not have real friends. Sibilings? (I have biological children who have helped me raise my son, Vic. I do not expect them to alter and constrain their lives in order to take care of Vic when I can no longer do so. I have letters in my top drawer, written to my other children, asking them to do specific loving things to keep Vic involved with them, if/when I cannot. I keep revising the letters, and questioning my expectations . . . I want to be fair to ALL my children--Vic is my adopted child, and I have 5 biological children, now grown.)
Forgive my jumping back to Neonatal Doc's original question about trying to distinguish between saving 23-weekers vs 24-, 25- or 26-weekers. Doc, once you "decide" this, you will no longer be going on a case-by-case basis. You must look at the individual child and the individual family/parents and their wishes and values, strengths and capabilities. I wrote in reponse to your June letters that if a mother says "I cannot do this," she probably cannot . . .
Listen to their wishes. Get counsel from ethics committees and pastors and extended family . . .
I'm going to go out on a limb here a bit. I'm going to guess that the parent who can do this, that is, raise an ex-preemie with disabilities in utter contentment, is a Zen Master, who can completely let go of any expectations; who can accept anything just as it is, never longing for anything to be different, never looking back. That person has tamed their anger and depression and anxiety till they are near-saint status. No tears. No regrets. No ambitions. Utter acceptance and humility . . .
I'm not there yet. Please write in detail if YOU are.
Chris and Vic
To Chris and Vic
I like what you say here, and agree with 98% of it. My fear is that most people will, at some stage, say "I can't do this." and with a newborn, without knowing what "this" is, or knowing how they will deal with the consequences of choosing not to do it. If you are lucky enough to know for certain you can not, will not and want no part of it, fine. And I would never claim that it is possible to raise a disabled child - or an able bodied child - in utter contentment. Clearly, it is painful, and people have different expectations and different abilities to deal with the pain. To say that this experience is not 100% negative is not to say it is desirable or compulsory. Yes, our children's lives are lonely, and that is hard to bear. But many non-disabled people are lonely, too. I would change it if I could. Some children are born into families where not even their parents care about them, and grow up to hopeless lives. I'm getting lost in this discussion. Is it about setting limits to life saving techniques or the quality of life of disabled people in general? Surely no-one would say that a baby should be "saved" if the result is inevitably awful, but surely the problem is that it isn't (quite) inevitable enough? I have known disabled people who were angry that they were born, and I have known disabled people who are angry at the idea that they are seen as having lives not worth living. My daughter could not, and can not, tell me which she would have chosen, and that makes me uneasy if I focus on it. Mostly, I don't. I was lucky, I didn't get a choice. I suppose I could have left her on a doorstep, but that didn't occur to me at the time. I just thought she was terrific. I still do.
Anna,
There is a research study currently underway here in the UK, looking at outcomes for babies born less than 25 weeks in 1991
They have found from the babies/children they are researching the following
Disability free survival
• 11% at 23 weeks or 89% left with disabilities
• 20% at 24 weeks or 80% left with disabilities
• 32% at 25 weeks or 68% left with disabilities.
If you want to read the rest it's here:
http://www.nottingham.ac.uk/human-development/Epicure/epicurehome/
I looked at the Epicure Study referred to, but had some difficulty finding the hard figures you quote. Using your link, I could only find data on 6 year olds, and as the site is fairly general, not a lot of information on the range of tests - or a clear definition of "disability". I did find this:
"despite all these negative comments, it is important to stress that most of the children were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns."
I have been somewhat baffled, as someone who vehemently supports the "pro choice" side of the abortion argument, to find myself arguing here for the "right to life". But actually, I am arguing for the way statistics are interpreted and conveyed to people making very hard choices. I suppose I am saying that in order to make an informed choice, the INFORMATION has to be sound, and that isn't easy.
I am a premature baby, a twin - born 6 weeks early, 60+ years ago. My twin sister didn't make it. What would you give for my chances? I'm here, managing, no more than averagely mental ill, IQ somewhere round 150, spatial awareness bloody awful. I'm a miracle baby! I do know this is hardly the same as the dilemmas caused by 23 weekers. The point I am struggling to make is that "disability" is not an absolute, it is a continuum. I suppose my experience leads me to believe that you cannot draw absolute lines, and that views are always going to be subjective. If "hard science" was that reliable, there wouldn't be a dilemma in the first place. It would be useful if people could be told authoritively that there was 100% no chance, but the reality is it's more a case of "Do you feel lucky?". Saving a very ill, very premature baby is a gamble with relatively poor, but changing, odds. I have no certainties, and I fear people who do. Young men are daily being maimed in Iraq. Some of them will have head injuries. Some would want to die, some would not. Same dilemma, same absence of any answer. To ask for a "debate" implies that it is society, not the individual, who decides.
My daughter was born at 24 weeks 1 day this past April. While in the delivery room my perinatologist tried to convince my husband not to ask for heroic measures to save our baby.....Thank GOD he ignored such advice. After 125 days in the NICU our baby came home with out any medications. We just had her tested at Childrens Hospital Boston and they say she is a miracle baby who shows NO Signs, I repeat NO signs of ANY delays...whatsoever! I bet you don't believe me, but it is true. I believe that God played a role but also the magnesium sulfate that I was on for 3 weeks prior to delivery. My baby never had even a minor brain bleed and there is some research that suggests that mag can help the development of preemies. I do understand that my case is rare, very rare but it goes to show that babies can survive at 24 weeks and live healthy lives. I said to my husband just this morning, "you know she could have learning disabilities." And he said, "yeah, who doesn't." Ain't that the truth! Nobody is perfect.
PS- I know the other side of prematurity. I delivered a preemie boy a year earlier who only lived for an hour and 11 minutes.
For the specifics on the EPICure study (which are far less happy than the quoted comments from the website) please see:
Marlow et al. Neurologic and Developmental Disability at Six Years of Age after Extremely Preterm Birth. _N Engl J Med_2005;352:9-19.
And be sure to read the accompanying commentary by Betty Vohr and Maureen Hack "Extreme Prematurity -- The Coninuing Dilemma.(p71-72)
If you cannot get access to these articles, please email me at Helen1144@aol.com
Claire,
I have to be honest and say this whole debate for me is not about if it's right to save such tiny babies, it's not about the number of babies who end up with disabilities, it's not about if they have a right to life or not, they have as much right to life as anyone. Society needs to learn to accept people no matter who they are.
It's about parents being told what the chances are of their babies developing long term problems. About services being there to meet the needs of these children, both as children and when they move into adulthood, it's also about meeting the needs of their wider families.
I have a 24 weeker who when we walked out of NICU we were told that developmentally he would be caught up by the age of two. This is still a phrase in common use amongst many Neo's. A friend of mine was recently told her 28 weeker would be caught up by a year.
My son spent the first year of his life in hospital, despite coming out of NICU at 22 weeks......along the way we discovered he had ROP, he'd been being assessed for this for 7 weeks before someone told us it even existed in his little world.
Many of us, me included, were not told about any of the risks associated with Prematurity, not even the risk of CP. So I in all honesty gaily walked out of NICU with an 02 dependant baby thinking that once the 02 went we would be on our way to (I dislike this word intensly but can't think of any other way to describe it) "normal"
By 13 months old they were talking global developmental delay. By this time he also had a gastrostomy tube fitted, I then spent another 4 years fighting the professionals to take me seriously when I said we had a feeding issue going on - turned out he has no swallow reflex and had been aspirating for almost 5 years, causing further damage to his lungs.
My son is now 7, he's diagnosed with, Autism, Learning Disabilities (is in special ed) Pharengyl Stage Swallowing Abnormality, Bulbar Palsy, Hypermobility, Gastrostomy Peg fed, Is 02 dependant at night because his lungs function at roughly 40% capacity.
When I had Michael despite him being a 24 weeker I believed it was a case of putting him in an incubator till he got fit, fat and healthy - he's never been any of those things.
The decisions we made in regards to Michael I'm not sure I would change any of them...But the one thing I resent is that no-one thought to warn us of the path that lie ahead for us. This was just compounded when a neo appologised because no-one had told us how things could turn out. Michael was 2, and the situation was driving me to serious depression, that conversation left me feeling that they all knew what we'd got coming and that we'd been deceived. I've had a discussion with one Paed who stated "We only tell parents about the risk of CP - nothing else"
To me that is wrong, this is our life, our children's lives and we should be fully aware of what is going on for them.
Why do we have to fight tooth and nail to get the services that our children need? I'm in the UK too, and the services here seem to be far worse than the services offered in the states.
It's about making sure parents know what the possiblities for the long term future is for their children, it's about having parent's experiences taken seriously, to remove the attitude that we know nothing because we're only parents.
The Statistics I printed came from the Epi-cure Study recently following the release of their 6.5 year results. Some of that information seems to have been removed, which is a shame, because there was some useful information on there. I do have some of it saved on my son's website.
http://www.michaelrigaud.co.uk/statisticsresearch.htm
Not sure if you saw the panorama programme but it was very interesting, and gave the full results of the study.
http://news.bbc.co.uk/1/hi/programmes/panorama/3655050.stm
Best wishes
Debby
Clare, I'm sorry I had a wander round the epi-cure site and found the link to the statistics.
They are here;
http://www.nottingham.ac.uk/human-development/Epicure/Interpretation/Page10d.htm
Interesting discussion - in 1986, I became a caregiver - I hesitate to say "mother", as nothing about our experience comes close to normal parenting. Our twins were born at 25ish weeks - 2 days after E's birth, she sustained a grade IV bilateral IVH - we met with our chaplain (a Catholic nun) and she supported our decision to d/c life support. Our neonatologist refused, although a DNR was implemented. E spent 5 hellish months in the NICU, came home with gavage feedings and 8 different meds. Fast forward to 21 years later - E. has massive uncontrolled seizures, is in a wheelchair due to two types of CP, profound mental retardation, visual impairment, etc. She is having yet another surgery on Tuesday, 1/16, this time to fuse her spine which has now become an "S" curve. Her twin, J. was our miracle baby - defying the odds - no IVH, no significant issues, and came home with no supports - no 02, no meds, nothing but feed and grow. At 3 she was diagnosed with cerebral palsy, at 16 she was diagnosed with high-functioning autism. She is in college (sort of) now over 2 years behind her peers and part-time. The battles we faced with these girls has been beyond comprehension and it is not close to ending any time soon.
If I could turn back the clock 21 years knowing how much suffering our family endured, I would have stayed home following PROM and delivered these babies on the bathroom floor. My extended family is staunchly pro-life, and even they, knowing what we have gone through, agree with me that neonatal medicine has gone way too far. One part of the picture that seems to escape discussion is how these situations blow families apart. My husband and I had a solid marriage pre-children, but divorced 10 years ago due to the stress of the situation. Parents are heavily stressed financially and the supports from the social service system are negligent. Mothers' careers are destroyed due to the need to remain in the home and provide a "hospital home." Then if a divorce occurs (divorce rate among families of disabled children is over 80%), the mother and children are virtually thrown into near-poverty. Should we only be concerned about saving the micropreemie while having no concern for the future of the family? Currently I am an RN student (my daughter, E. is no longer living with me), and I cringe every time OB topics in school come around to preemies and NICU's - truly, people just do not know what families go through once the NICU doors slam shut behind them.
Inform parents before....
I was like most people before the birth of my 25 weeker, 11 years ago. I thought either preemies lived and did ok or they died. Trust me death is not the worst thing that can happen. I was never asked if I wanted to 'save' my daughter. When the doctrs were done they sent her home. I can't find daycare and have a hard time finding doctors to care for her.
The 2 1/2 years she was at home on the ventilator were the worse time of my life and I am sure the 6 months in the NICU was the worse for her.
I would NEVER have said to save her if someone had just ask before they put me to sleep.
As to money used better other places, I am sure the 3 MILLION she has cost could have saved hundreds of lives.
I love her and would not wish her dead now but I do hope she dies before me... who will care for her when I am gone. Kristina Fallon
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