Tuesday, June 20, 2006

Discrimination

This past weekend I talked to a mother who was 24 weeks pregnant and had already broken her bag of water, making it fairly likely that she would deliver soon. We are frequently asked to speak to such moms prenatally. I told her about the NICU, about the prematurity of all the organ systems of the baby and what that means in terms of care, and about an estimated length of stay. Most importantly, I discussed survival rates with her and the chances of disability in survivors, and her thoughts about resuscitation of her baby. She said she wanted everything possible done for her baby.

Twenty-three and twenty-four weeks gestation are sometimes called the border of viability, because these are the earliest gestations where reasonable numbers of babies begin to survive. At 23 weeks the survival rate is about 30% and at 24 weeks it's 55 - 60%. Approximately one-quarter to one-third of those survivors will have a significant disability. Considering the survival and disability rates, many people think we should give parents the option of whether they want their baby resuscitated if born at those gestatioins. I don't have too much of a problem with that in a baby at 23 weeks gestation, but I personally find it hard not to resuscitate a 24 weeker. If a parent of a 24 weeker told me not to resuscitate her 24 weeker but rather let her die, I'm not sure I could respect those wishes.

I think we can all agree that at some gestational age all babies should be resuscitated and given life support (if necessary), regardless of the parents' wishes. For example, if parents of a 30 weeker - when the survival rate is greater than 95%, with most of the survivors without disability - said not to resuscitate their baby but let him die, just about everyone would agree that we should resuscitate that baby anyway. Similarly, if the parents of a 20 weeker - when there is no chance of survival - requested resuscitation, almost everyone would agree that it is acceptable for the neonatologist to refuse that request. But at what point in between does it become okay to not do as the parent wishes? Is it at 25 weeks, when the survival rate is 70%? Or 26 weeks, with a survival rate of 85%? At 27 weeks, with a rate of 88%?

Personally, I think it's tough to not resuscitate a baby when he or she has a 55 - 60% chance of survival, and I'm glad that in the population I work with nearly everyone wants everything possible done for their baby. (Most want everything done at 23 weeks, too.) As I mentioned in a previous post, if a, say, 10 year old had a disease with the same survival and disability chances of a 24 weeker, many people would want to call Protective Services to force treatment if the parents declined treatment. So what's the difference between that 10 year old and the 10 second old 24 weeker? The difference is age; it sounds like age discrimination to me if you'd allow no support for the baby but not for the older child.

This discussion can get hugely complicated; we haven't even mentioned things like quality of life for people with disabilities, or costs of treatment, both financial and emotional. I just think that sometimes we have to stick up for babies' rights.

31 Comments:

Anonymous Anonymous said...

Similarly, if a mother chooses to end her 10 year old child's life, she would be charged with murder....so why not, instead of an abortion at 25+ weeks, the baby be delivered alive, and adopted to a mother who wants that child?
I know, sticky territory.

10:15 PM  
Anonymous Anonymous said...

Just wanted to say that I'm a mom of two preemies (29 and 27 weeks, respectively), and I just discovered your blog today. It's quite interesting and I'm enjoying the chance to hear the doctor's perspective. Thanks for sharing things so honestly with us.

10:31 PM  
Anonymous Amka said...

I'm curious: where do you push the frontier in survivability? They can't survive at 20 weeks now, but do you see technology that could let those extremely young ones live? How does this kind of research happen?

One of my very good friends who is 32 now, held the record for 17 years as the youngest preemie to survive. I'm really glad that they did, but I wonder what doctor decided to try?

11:58 PM  
Anonymous Anonymous said...

Another mom to 2 preemies (34 and 27 weeks) saying that your blog has been so helpful to me. I always wanted our neo to speak with such candor. Thanks for sharing your perspective.

Living with former preemies can sometimes be frustrating, but the rewards outweigh the costs. Darn preeclampsia and its after effects.

1:01 AM  
Blogger Clark Bartram said...

To the first anonymous, that sounds fine but good luck finding people to adopt former 25+ week premies. That's a whole lot of sacrifice to expect of people what with the cerebral palsy and many other health issues. Not to mention the fact that the biological mother could at any time take the child back. That's why people adopt from places like China.

1:06 AM  
Anonymous Anonymous said...

My daughter will be 29 next month. At 29 weeks gestation, I was admitted to hospital with severe pre-eclampsia. In those days, little could be done, as NICU units here in England were few and far between, and the chances of survival were practically nil. The only option then was a gamble between too soon and too late. We lost the gamble when things deteriorated rapidly at 34 weeks, and she was born brain damaged. It makes me feel very wistful to see how things have changed. My heart goes out to the mothers of your tiny babies - but how amazing that so much progress has been made.

5:07 AM  
Blogger Flea said...

anon 10:15 immediately identified the waters you've sailed us into, ND.

There are two categories that demand we opt on the side of life: "wantedness" and "respiratory effort". That is to say, if a parent is unsure or plain doesn't want a baby, the benefit of the doubt ought to go to the baby. And if the baby comes out trying to breathe, you ought to resuscitate it.

And Clark, with whom I usually agree, the real reason foreign adoptions happen is that they are marginally easier and cheaper than domestic adoptions. I used to believe that the problem was the relative lack of healthy adoptees, but I have been persuaded otherwise.

best,

Flea

5:22 AM  
Blogger stockingup99 said...

My baby, my choice. How 'bout the story where the parents said do not resuscitate, and their desires were ignored? They were forced to pay many many thousands of dollars for resuscitative care the insurance didn't cover, and the child had a very painful poor quality of life.

The parents should be able to choose. You can only know with your heart.

The way doctors took away my rights to choose, is what pushed me to out of hospital birth with lay midwves.

Pushing formula into my first, after only giving me 30 seconds with no help to feed her, while still being stitched was very different from the birthplan they signed. For a full term baby, with great scores, I really don't think low blood sugar was that critical. Of course it was low, they had denied me food and drink for 25 hours of labor. That hospital really pushed the free formula.

And the eye goop, as NeoHero mentioned in an earlier post. At 30 weeks, my birth plan was signed which included no prophlactic eye poison. At 37.5 weeks, after I had been practice laboring (timing regular contractions for hours each day) I was informed that the eye goop could not be skipped without a court order. Nice. At 30 weeks I would have gone and gotten it, at 37.5, I was much less likely. Is that informed consent? If they knowingly took these choices, what other ones did they take?

I think choosing to birth out of the hoispital was undeniably safer in my case. At eight months along, I took the tour of the hospital which was very nicely decorated. I found out they have a level 1 neonatal intensive care unit. When I switched to the midwifes office, it was minutes from a level 4.

The hospital policies was 'can't even stabalize here', babies are airlifted away without either parent, and mom will not be allowed to follow for at least 24 hours. Could they make it any harder for you NeoHero?

8:30 AM  
Blogger sailorman said...

I think there's something very wrong with deciding that--for ethical and legal reasons--you may not respect the parents' request to NOT resuscitate their baby. However, i also see that you need to draw a line somewhere, and we traditionally take away some parental control over the fetus when the fetus is born.

Were I to be the doctor in the situation, I'd try VERY hare to balance my respect of parental autonomy and my "I'm not going to sit there and watch the infant die" feelings.

I think some solution may simply be in letting the parent know of the various medical options which are normally NOT recommended.

E.g. are you inducing or sectioning the baby to make sure it comes out alive? If the parent doesn't want resus then doing any measures to get it out alive doesn't make a damn bit of sense.

Are you recommending the parent go to a large metro hospital with a NICU to keep the infant stable? Would the infant die elsewhere? if the parent doesn't want resus you are obliged IMO to inform them that (for example) giving birth in a distant rural hospital with no pediatrician on duty means that the infant will almost certainly die and won't have a significant additional risk to the mom. And so on.

I think it's perfectly OK to have your own personal "I refuse to be a part of this" line in the sand. But as a doctor I DO NOT think it is OK to have that line drawn unless you are excruciatingly clear about where it is, and how people can get around it if they want to.

8:51 AM  
Blogger NeoNurseChic said...

I have a hard time with the concept of forced resuscitation of 23-24 weekers. Sure, the lucky ones may turn out "just fine." But the vast majority, if they make it, appear to live with CP and excruciating pain for the rest of their lives - however long or short those tiny lives may be. As much as I would feel compelled to do everything possible for a baby, I cannot personally throw the concept of quality of life out the window when considering these issues. Were it me delivering a 23 weeker, I would want to hold that baby while he or she died peacefully. If it was 24 weeks, I'm not sure what I would want - I would need to consider those issues more in my own mind.

I read not all that long ago that in England, they manditoraliy resuscitate at 22 weeks and up. That actually broke my heart...

If I'm considered to be an advocate for the baby - and I am - I feel that it's important to respect both life-saving capabilities and also quality of life. How many times have I looked at those tiny, worn out eyes that seemed to be screaming, "Just leave me alone and let me die." If an adult were going through something so unbelievably painful with, frankly, minimal pain relief, they would be allowed to die if they wanted it. But this profession appears to be so cavalier about saving anything they can that sometimes babies are saved that most definitely never should have been. If the baby really did have a choice, I bet sometimes they would say they would rather die, too.

Not that this means I don't do absolutely everything possible for all babies I care for, if that's what is desired - and 99.99% of the time, that's what is wanted. Just recently, I pulled a month old ex 24 weeker out of a transport isolette off helicopter and began doing compressions almost immediately - throughout the day ran myself ragged - and also saved that baby's life. And I'd do it again for her. But sometimes I look at her and do wonder what the cards hold for her. 3 doses of morphine and 1 dose of versed and she still looked like she was in excruciating pain. :(

Take care,
Carrie

10:44 AM  
Blogger Ex Utero said...

The crux of the issue is parental autonomy versus presumed patient (neonatal) beneficence. And the key word there is presumed, because even though the statistics may give a 24 weeker a 60% chance of coming out intact in terms of neurodevelopment, in the end, what really matters is what does fate have in store for the individual? Only parents are qualified to scry that crystal ball, even if they are not able to fully grasp all the long term implications.

I don't have the answer to this one and I struggle with this issue on a case by case basis. I think some of the issues that are missing from the thread thus far are: cost to society of caring for an unwanted child, added merit of intervention when a child is wanted by parents (both for parental quality of life and for the child's), and the fact that we don't improve our ability to save younger gestational ages by randomized trials, we do it by one compassionate intervention case at a time.

10:57 AM  
Anonymous Ariella said...

If a parent of a 24 weeker told me not to resuscitate her 24 weeker but rather let her die, I'm not sure I could respect those wishes.

I think there's something both legally and ethically wrong with this statement. We're not talking about a baby who's not in distress and about whom the parents have instructed you to withhold food. We're talking about a baby who is premature, at risk for significant cognitive delays, and who is in some type of respiratory failure (since we're talking about resusitating).

If a parent says, "No, I don't want you to resusitate my baby," then their wishes should be followed. It's only when you're killing a healthy infact (which is arguable here) where I would say that the doctor has the right to step in. Many parents do not want to deal with -- or cannot cope with -- the demands of a delayed child. IF they're fully informed about the risks and possibilities, then I don't see a problem with accepting your personal limitations.

I also think that Dr. Flea is wrong: I work in the judicial system with children who are cognitively impaired from CP or other mental retardation (along with babies born drug-addicted), and finding foster parents or adoptive parents for these children is very, very difficult. Many people love the idea of being a foster parent, but once they find out about the fact that the majority of the kids have emotional and mental disabilities, they're no longer so keen. It's even more difficult to get them adopted. And, if you're adopting from foster care, the costs ARE less than a foreign adoption (at least as I understand them).

11:11 AM  
Anonymous Anonymous said...

My Family adopted from the US. The experience was amazing. I think that she had withdrawals for a month or so from the drugs in her birth mom. It was a little difficult not knowing how to help her but she was normal in every other way. She was little at birth and we aren't sure what week she was born at. She is almost 3 years and is extremely smart and very happy. This was a private adoption so it was not too expensive although we did pay for a home study, court costs, lawyers, security checks, etc. It is very important to make sure that all your "t"s are crossed and "i"s dotted. The birth parents do have 3 days that they can have the child back no questions asked. They then have 2 weeks that they can send papers into the judge to request a return of the child. At a later date you have a "final decree" that set's it in "stone".

My family had a situation where a baby was born at 35 weeks, almost 5 lbs. She was taken by an emergency C because her blood pressure had dropped. She came out wiggling and kicking but she could not get air. She was born at a HUGE hospital that had the best of everything (it was 16 years ago). They doctors tried to get a tube down her throat but couldn't. I don't know why the didn't do a trake. She had a blockage at her windpipe. The doctors told the mother that they didn't do a trake because they were afraid that she would have been retarded mentally and that it had been several minutes before they realized what to do.

They were afraid of brain damage so they didn't do a trake. Should they have? I defiantly think they should have. The dad wasn't allowed in the emerancy C and the mom was out. It was not their call to make. Do it and try to save it is what I say. Especially if the baby is enough developed that it would not be severely deformed.

I was deprived of my baby sibling because of that call the doc made.

12:50 PM  
Blogger Becca said...

Coupla issues that are bothering me here, folks:

First and foremost, CP is not painful. Some of the things that we insist on inflicting on very small children with CP undoubtably are, but that is not quite the same thing.

Secondly, CP has got nothing whatsoever to do with 'mental retardation', learning disability or whatever your preferred term for it is. Yes, a lot of kids with CP also have learning disabilities, but the diagnosis of CP itself is a physical impairment, not an intellectual one. Anoxic brain injury or whatever you call the results of IVH or PVH often causes both CP and intellectual disability but it does everyone (particularly those individuals with CP who do NOT have any intellectual impairment) a very great disservice to speak as if they're one and the same.

And thirdly? Please, please oh please can we sort out the difference between functional impairment and quality of life and start appreciating the damage done by value judgements thereof.

Not directed at any one person in particular but I keep hearing the same stuff and it's bugging me. :)

1:12 PM  
Blogger stockingup99 said...

Whose choice is it? Whose should it be? Do you mind parents expecting you be like a god? Is it too much responsibility to push unto an already overworked professional?

What are the consequences to the care industry?

So many questions....

2:34 PM  
Blogger SGA said...

It's definitely a difficult situation to be in- my own limited experience is that parents will accept an increased chance of an adverse outcome if there is a chance the baby will be "all right"- people will usually hope for the best.

Not to mention the fact that the biological mother could at any time take the child back.

Clark- are you referring to foster children here? In my understanding, once a child has been adopted, the biological parents surrender all legal responsibility and authority over the child.

5:20 PM  
Anonymous Anonymous said...

Everyone is entitled to their opinions. As a Pediatric senior resident, and soon to be neonatal fellow, I do not agree with you. I think we should respect the parents wishes if they do not wish to resuscitate their 24/25/26 weekers. Even though survival rates are at an all times high, significant morbidities, developmental delay and suboptimal IQs often result. We see many of these parents who want 'everything' done, 2-3 years down the line, who tell us maybe they should have considered 'the other options'. Parents lives are consumed by children with special needs, often leading to broken homes and financial disarray.
Personally, I dont think we are at a stage where we can confidently predict that any neonate less than 28 wk gestation will not have significant morbidity.

10:00 PM  
Anonymous anonymous 10:15 said...

I am anonymous 10:15. I am also the mother of a child with severe CP (spastic quad) who will probably be in a wheelchair for life, so I can say with full authority that having a child with developmental delay, disabilities, etc. is NOT the end of the world. Sure my life has changed, but quite frankly, taking care of a severely disabled child is a lot easier than the job I held before he was born. And the rewards are sweeter.

My son was not a premie. He was born full-term but had a traumatic birth. His first Apgar was a 1. After that he was on a vent. He spent quite a lot of time in the NICU. He has already had a number of surgeries and admissions and he faces more in his lifetime. But that does not define his life. He has friends, favorite things to do, favorite foods. In short, he is a person.

Besides, who knows what life holds. That baby, born perfect, could end up in my son’s shoes through an accident. Will you turn up your noses then and smugly discuss the impact on the family, the cost to society and whether that child should be treated? Sounds a little like the philosophy of the enemy we defeated in a war about 60 years ago.

Who is to predict a child’s life? If a baby has a 70% chance of getting cancer from a genetic source would you suggest to the parents that that baby not be taken care of at birth?

Neonatal Doc is right. There is discrimination, but it is against the disabled and those with developmental delay and suboptimal IQ.

Every life has value. If you cannot see that, then maybe some of the commenters should consider another field. Perhaps advertising – that’s cold and cutthroat.

11:25 PM  
Blogger NeoNurseChic said...

I would just like to clarify that my own standpoint is not based on any cold or cutthroat feelings. I have also taken care of CP children who actually are in excruciating pain. Last year, I spent 5 weeks taking care of a 16 year old boy whose contractures were so painful that he was constantly admitted to the hospital - between the pain and the spinal surgery he needed to have - it was very very sad. He was cognitively fine, but his pain was something I will never forget. For some, it is devastatingly painful both physically and emotionally.

And when I speak about allowing some babies to die in peace - I come from the perspective of humanity and one that would hope we would try to see that some babies should not have to be put through the pain that we force them to go through. The sensitivity to pain of a baby born at 23 weeks is unreal. I'm an "adopted" big sister to 26 week twins, and I will say that the twins are difficult to touch because they get very upset. Everything hurts them. I love them with all my heart. They are my "brothers". But I look at their lives with sad eyes some days. My heart breaks for their pain every day.

Not everyone who feels that babies should have a right to die is coming from an inhumane perspective. I don't view it as related to the cost of society at all. If someone really wants their child to live, then I could care less about the cost to society. I don't ever think of cost to society when one is preparing to die, etiher. I do find it inhumane to force all babies of a certain gestation to live, against the parents' wishes and against what appears to be the wishes of some of these infants based on how many times they "die" on us, only to be revived time and time again - in worse and worse condition each time.

Bottom line for me is that it shouldn't be something forced. I agree with ex-utero in that it should be an ethical decison made on a case-by-case basis. If it were my child, I would want it to be my choice. I have already told a good friend of mine, who is just finishing his intern year in OB, that if I were to go into labor at 23 weeks, I would want to hold my baby until he or she died peacefully. I do not want interventions at 23 weeks. That is my choice - and I dread the day when that choice might be taken away from me.

Carrie

1:26 AM  
Anonymous Anonymous said...

I have to agree with you that if with the odds being that high, I too would have a great deal of difficulty in honoring a parent's wishes. I think a better way to phrase that is when the odds that a baby will live are x %, then the baby should be resusitated.

I am really getting tired of all the discussions around the quality of life issues for disabled children/babies. Where is the respect for the lives of these children? It is not about the cost issues-yes, they cost more but I could make the same argument that at some point there will be individuals who have illnesses or situations that rival those figures-so should we not save the disabled babies because they are more expensive and yet it's o.k. to spend those same amount of healthcare dollars on other illnesses. The dollar piece needs to be dropped from the argument unless we are going to evaluate all chronic illnesses and disabilities based on that criteria.

Next, the quality of life issues have got to stop. Yes, those disabled babies won't be able to do what other children do. Period. Maybe not today and maybe not ever. But does that mean their lives are horrible or the lives of the caregivers or parents are horrible. No. Does it mean they aren't happy? No. Does it mean that they aren't loved and cared for? No. Does it mean that sometimes you have kids that aren't cared for, loved, etc.? Yes. But why is that the deciding factor for disabled babies only and not a deciding factor for ALL babies? It doesn't even belong in the argument.

What is the issue? I think no one disputes that these disabled children, parents, caregivers have a more difficult time due to all of the issues. But maybe, we need to figure out a better way as a society to address some of these issues to make it easier to care for them. After all, if we are going to save these babies, then the real issue is to put some support in place in the society to make it easier to care for them. Things like daycare for the disabled so the parents can work and figuring out a financial model that would work. Allowing these parents to work would lessen the dependence on Medicaid and therefore increasing reimbursement for services. Working on better Respite programs. Having facilities at ALL hospitals and businesses in the communities that offer a decent place to change a disabled child/teenager/adults diaper so they can go out into the community. I can go on and on but that's enough for this post. There are so many things that we CAN do to make these lives easier.

Good post.

11:02 AM  
Blogger mary said...

Neonursechic: The vast majority of people with cerebral palsy are not in pain. If you are deciding to not resusitate a neonate on the basis that some people with CP have pain and the neonate will probably have CP, you are not basing that on fact. The fact is, CP is not in general painful.

Everyone: cognitive disability (mental retardation) is not painful or sad from the point of view of the vast majority of people with this form of disability. It is a perception and value judgement you are placing on that person, not that person's own perception. That they may lack the ability to make that perception is not the point. The point is, they are not "suffering" from mental retardation.

And if we decide not to let someone live because there is little support for them later (ie: hardly any foster care for kids with complicated needs; not enough community support in general for parents and individuals with high-technology needs, etc), where do we draw the line? To hear many people talk, there isn't enough money for funding Medicaid in general. But we let poor people take home babies who are covered by Medicaid.

If there's lack of community support for some aspect of humanity, we work on building community support, not on thinning the ranks of humanity to accommodate the poor support systems.

At least, IMHO.

12:23 PM  
Blogger NeoNurseChic said...

One thing I'd also like to say is that my cousins have cystic fibrosis. For those who don't know what that is, it is the number one fatal genetic disease among caucasians. The girls are a year older and a year younger than me - both still alive, at age 26 and 24. My aunt later lost another child to CF/heart/lung complications at 2 days of life. She has also lost 2 children to traumatic accidents. She is one of the strongest people I'll ever know.

The other day, I was talking to the mother of a new CF baby, and we had a discussion about the pregnancy. She would not have terminated her child at the point she found out he had CF, and I have said repeatedly throughout my life that knowing if I'm a CF carrier would help me to prepare for the future, but it would not necessarily prevent me from having children, and I would certainly not terminate a CF pregnancy if I didn't find out the baby had it until I was already pregnant. If you were to ask my cousins if they have been glad to be alive, the answer would undoubtedly be yes.

I couldn't begin to describe what they've gone through. Hospital stays are very frequent. By the time the older one finished high school, she was on her third port. The younger one has only had a port for a few years. The older one was once life-flighted from the high school to the hospital for passing out and turning blue - her docs couldn't figure out what caused it, so they sent her to a psychologist and said it was all in her mind... :( My older cousin and I are very similar in personality and that we've both been involved in the theatre since we were very little. She's a kindred spirit to me - I value her life, she values her life, her parents value her life. We've all felt sad and frustrated at times....angry at God even, at times. Even my cousins have cursed their own disease and felt heartbroken that they had to live with that for their entire lives - in spite of the fact that they have never known any other life but one with CF. They still are aware that other children don't have to live with what they have. But we also have felt a lot of love - and I do mean a LOT of love.

So please - don't judge me as if I'm someone who doesn't know because I haven't been there or haven't had children. I get tired of people acting like because I don't have kids, I cannot possibly understand. I've been through quite a lot in my life already - and I've been to more funerals than weddings. I'm not saying that all CP children have excruciating pain or that all children who face disability should be left for dead. That's not what I'm saying at all. However, I do believe that if the parent wants to hold their child while he or she dies, then that is their right. They have chosen to allow that child to live in peace. And the child isn't even necessarily destined to disability at that point, but the child is so premature that it cannot live on its own at that point in its life. I believe that if the parents opt to provide comforting end of life care for a 23-24 weeker, then that wish should be honored.

Here's to still hoping that I'm not ever forced to make that decision. A few years ago, a doctor told me that if I am a carrier of the CF gene, then I "owe it to humanity not to have children." I was very, very upset. How dare he tell me what to do - even if it means the gene continues on?? I would never want to put my child through a life of CF or any hardship really (I was one who got sick when I was not an infant - and I still think my life is worth it...), but I wouldn't simply terminate a pregnancy or allow a child to die simply because I knew my baby was going to have CF or another disability. However, I still want it to be my choice to comfort my micropreemie, if I were in that position...

Carrie

3:52 PM  
Blogger neonataldoc said...

So many great comments, there is no way I can respond to most of them. I wrote about this subject again in today's post. Thanks to the anonymouses who complimented my blog - it's nice to hear. Anonymous 10:00 P.M. (the pediatridc residient): It's not unusual to have pediatric residents down on NICU grads. But look up the numbers for 26 and 27 weekers; a lot of them do well. Also, realize that some studies show that as NICU grads get older, they improve. You can't use studies of outcones at 18 months as a good guide.

6:59 PM  
Anonymous Anonymous said...

This is in reply to anonymous 10:15's post. I was anonymous 10:00.
There are many ifs and buts. I agree that if a full term baby develops CP, or your teenager becomes paralyzed because of an accident, you are not going to turn your face away and abandon them.
But the question here is WHY you want to create children with developmental delay, mental retardation, suboptimal IQ by resuscitating 22 weekers? In addition to the fact that these are a tremendous burden on the taxpayer, they are an emotional drain on the parents as well.
I come in contact with parents of preemies in my day to day life as a Pediatric resident, and I have seen many a family being split over issues like this.
I agree you ultimately learn to compromise, but I refuse to believe anyone who says they wouldnt want a healthy, normal kid. By resuscutating 22 weekers, the odds of 'creating' a kid with disabilities are much higher.

10:53 PM  
Anonymous Anonymous said...

to anonymous 10:00

Your question "WHY you want to create children with developmental delay, mental retardation, suboptimal IQ by resuscitating 22 weekers?"

AS far as I know the only time a child with delays is "created" is when an arrogant doctor lets a patient wait hours for a c-section while the baby is in fetal distress until that child is blue, not moving, not breathing, barely has a heartbeat, has massive 'insult to the brain' and requires ages in the NICU.

Can you possibly be as arrogant and lacking in compassion as your posts indicate? If so, perhaps you should reconsider your field. I hear there is quite the demand for malpractice lawyers.

11:41 PM  
Blogger mary said...

Anonymous 10:53 said:

In addition to the fact that these are a tremendous burden on the taxpayer, they are an emotional drain on the parents as well.

Expense and burden cannot be the basis of a decision about treatment. Bone marrow transplants for a 7 year old may be a tremendous burden on the taxpayers, for instance, and a serious emotional drain on parents. But we don't make decisions about treatment based solely on those factors.

Those of you in the neonatal ICUs making these hard decisions are looking for answers that may never be there: what's the point in time measured in gestational weeks at which we say "resuscitate", when currently that point is arbitrary at best?

I don't know.

Currently, I have to fall back on the old "this should be an individual decision made between family and doctor" until (or unless) we get clearer messages about this issue.

But arguments about disability-and arguments about cost and burden based on disability-are dangerous precedents that have real ramifications for people living with disabling conditions who require technological support, money, and resources of other kinds. Neonatologists arguing that it is unethical to allow a person to be resusitated because they will become a person with a serious disability are making a quality of life argument that impacts the way the rest of us view living people.

Be careful the argument stays about the individual little being before you, for whom an individualized decision has to be made, and away from a general portrayal of disability as undeserving of life.

8:18 AM  
Anonymous Anonymous said...

In reply to Anonymous's post about 'arrogance', such a nincompoopish post cannot be from a physician. you obviously have no idea how things in the medical field work.
For one, Obstetricans are not idiots so as to delay a C-section to bring upon a law-suit. There are imbeciles like you who represent the other side of the coin and condemn 'unnecessary C-sections'. Frankly, all you cretins who are not physicians have no idea how decisions are made.
Do you have any idea what a 22 weeker is like? They are less than 500grams. Your liver is more than thrice that heavy. I saw a four year old former 24 weeker in my clinic today. She is blind, does not talk, is not toilet trained and is probably autistic. All she did during the whole visit was rock back and forth. This was after receiving 5 months of care in a state of the art NICU and costing the taxpayer hundreds of thousands of dollars. She will probably live to be 80, all the time being a tremendous drain on the country's resources.
Emotions are nice, but learn to use your brains once in a while. I pride myselfin being a physician who can see the big picture and who doesnt like to play GOD.

11:54 PM  
Blogger Judy said...

There is a third option here.

There is no moral difference between discontinuing life support and never starting it. Emotionally it is more difficult, but morally it is the same thing.

In our NICU, virtually all babies born at 23 weeks or greater are resuscitated. If it is obvious that treatment is futile, life support is withdrawn - with the parents' consent. Discontinuing support is not always an easy choice, but for our docs it's easier than not resuscitating potentially viable infants.

3:33 AM  
Anonymous CAK said...

Such complexity! How can anyone tease apart the threads of the various issues as manifested in individual cases, and then re-weave the threads to a coherent ethical (not to mention legal) tapestry?!

Sometimes it seems to me that it will always have to be case-by-case. But we also have to have general principles and values that inform decisions. Docs have "professional principles" shaded by personally adopted values (maybe even religious?). Parents have their own personal values---and they also have fear if not panic, when asked to make a life-and-death decision about a child of their own on the spur of the moment, which by the way, is a moment of pressure/crisis. Could any of us do this gracefully?

Nope. I think not. I suggest, therefore, that prenatal care include ethical discussions about the 12% possibility of giving birth prematurely, and what would the parents want if that happened. Discuss this during prenatal visits up till the 30th week . . .

When I talk with my NICU colleagues (nurses) about what we would want/do if we were in premature labor, those of us who are willing to confront this possibility will say that we would handle a very premature labor at home on our own. We know that once we step onto hospital premises, we may well have our decision-making unduly influenced or outright taken away (remember Sidney Miller?). We would have to handle the premature birth on our own, at home, on our own terms, and perhaps come to the hospital later . . .

I am an NICU nurse, a nursing instructor, the mother of an adopted ex-25 weeker. Here is my suggestion to clarify quality of life questions. Everyone---doc, follow-up clinic people, nurses, social workers, court authorities
---MUST spend a day in the life of an ex-preemie. You must accompany the child at home and at school, to specialist and doctor appointments, and to therapies. You must grocery shop with the family, and respond to the stares and questions of strangers. You must learn to use the equipment--the monitors and feeding pumps, nebulizers, g-tube feedings. You must mix the formulas and measure out and give the meds, round the clock. You must try to curb the behaviors in public places. You must go to church or to a movie or entertainment venue with the child and his/her family. You must go to a restaurant. You must not just observe---you must get involved, helping to manage all the issues. You must try to get through doors with wheelchairs. You must toilet the 11-year-old who is not yet potty-trained, in public. You must go to the school when they call you with a behavior that they believe is dangerous or needs medical attention (seizures anyone?). You must wait in line at the pharmacy to pick up the meds. You must deal with the insurance. Oh, and write the checks for co-pays and equipment not covered by insurance.

To the person who believes that we must NOT discuss quality of life, I say that the exact opposite is true. When we add up all the issues over all the months and years, we must try to describe our quality of life with our ex-preemies. We must do more than grieve or complain. We must do more than rhapsodize---there are some parents in both camps. We must honestly weigh the pros and cons, the strengths and weaknesses of the kids and families. Eighty percent of the families end in divorce---that is a fact. Forty percent of the micro-preemies will never live independently---also a fact. If you have private insurance, as Sidney Miller's parents did, you would max out your insurance in a year or two and require public assistance and/or bankruptcy or a lawsuit for the cost of a lifetime of care. It all must be weighed and measured. It is not just sentiment---it must be calculated, so that the mother knows if she can become a stay-at-home caregiver for her special needs child, or if she MUST go to work for health insurance benefits. On the other hand, there are few day cares that will take on the ex-preemie with special needs. So, how will she work? What will become of her career? Is she ready to learn the complex cares? Is she an assertive advocate for her child, among all the professionals involved in her/his care? If at any time, including at the birth of the child, she says "I can't do this," we should listen---because she has a glimpse into how formidable a task it is to raise a child with special needs/disabilities. She is likely to end up a single parent. She is likely to experience chronic grieving or PTSD or depression. She is likely to be very poor, on Medicaid, perhaps on welfare . . . If we say she MUST have this child and we MUST resuscitate him/her, we had better be ready to support her and the child for the duration. Are we ready to get to know her, stand behind her for the lifetime of the child? With time, perhaps voluntarism, money/taxes?

Those of you directly involved in such a decision, try to anticipate it. Get the hospital medical ethics boards involved. The chaplains. The whole neonatal team
---nurses, follow-up clinic workers, the foster care system, adoption agencies, insurance companies, pediatricians, extended families, social workers. Don't abandon families with their ex-preemies, nor with life-changing decisions.

NeoDoc, you wrote about taking on the young mother in the waiting area---You must, in some way, do this. You seem as if you are already very involved and committed, and I commend you. But there is more to be done. Get a team---other neos, parent mentors, pastors and community leaders---alerted and involved, for ongoing support. Involve the bedside nurses in follow-up---mother-to-mother.

Where I live/work, there is an organization called Hope Network. Young, single moms who have made the decision to have and keep their babies are supported into the future. The first and most direct and simplest thing was to get them living together with another single mom, so that each could support and babysit for the other. Church members, willing to give rides to the doctor's visits, were mobilized. There was a baby clothing exchange that is ongoing. A quilt is raffled every year to raise money for a scholarship so that a young mother can continue her education . . . There is a newsletter.

It is a matter of getting creative as well as ethical
CAK

9:25 PM  
Blogger Julie C. said...

I'm a mother of a 22.4 weeker who will be 7 next month. I am *so very thankful* for the NICU team who resuscitated her. Of course at the time they thought I was 23.0 weeks - their "cutoff". However, my beautiful daughter came out with two kitten-like cries - amazing, really.

She should not have survived. She had major air leaks, PIE, renal failure, horrid seizures, and abdominal bleeding (of unknown origin) her first week. However, there was no IVH, no NEC, and not one single infection in her 21-week hospital stay.

Today she is smart as a whip with wonderful problem solving skills. She is beautiful and has a great sense of humor. She does have autistic/sensory issues and is functionally non-verbal (but communicates well), has mild hypotonic CP (walked at age 5.5), but is such a joy to our lives!! We can't imagine life without her.

Not only are we grateful for those that resus'd her, but also her entire NICU team who never gave up - the endless bagging episodes, the mother hen watching, all those a's & b's...on and on. They let us keep our precious gift.

I'm also glad that even on the days she should have died, we were never given the option of a DNR. The team knew where we stood from before her birth (we had 6 hrs warning).

She was the biggest miracle of their unit's 25-year history.

10:40 AM  
Anonymous Anonymous said...

I am currently 22 weeks and 1 day and terrified of preemie delivery. Every cramp, fullness in my pelvis, and Braxton Hicks sends me into a panic. I've waited so long for this baby, 15 years in the making. Reading the stats the doc gives in the beginning makes me realize just how much a week makes a difference. It is good to know that my son has nearly a 60% chance of making it at 24 weeks. At 23 weeks, 30%? I thought it was 0% before 24 weeks since the earliest known preemie surving according to everything I've read is 21w6d gestational, but that is 23 weeks 6 days the way we measure pregnancy from LMP. Before we knew the sex, people would say, oh, whatever you get, as long as it's healthy. No. That isn't even a determining factor. Until you are in the shoes of a parent who is faced with a preemie, you have no right to judge based on your own opinions or costs, or whatever. Life is priceless. The happiest child I know is my friend's son with Down Syndrome. She would not have changed him for the world.

3:50 PM  

Post a Comment

<< Home