Tuesday, February 13, 2007

Outcomes II

I can't get off my mind some of the comments made a few weeks ago about the outcomes of very premature babies, mostly in response to my posts Outcomes and Ignored. (There's been similar discussion recently at Tales From the Womb.) Specifically, I think of the comments made by mothers of some ex-premies who had very bad outcomes. Terri w/2 has a 21 year old with severe impairments; Helen Harrison has a 31 year old with hydrocephalus, cerebral palsy, and mental retardation. Both mothers advocate that realistic evidence be given to prospective and new parents of very premature neonates and that parents have a real choice in whether to resuscitate their babies or continue treatment when the outlook is very grim. I think they believe the neonatology establishment in general is too optimistic about outcomes and too aggressive in saving tiny babies.

As someone who takes care of tiny babies for a living, my first reaction is to be defensive, but that's not really fair. I think of what it would be like to have a child with devastating impairments. It is a huge burden, not only the daily grind of their immediate care, but also the fear of what will happen when the parents are no longer there to care for them. We may be tempted to say that the parents think it's all about themselves, and their own desire for an easier life, but I believe them when they say one of the hardest things is to see their child suffer, suffer through things like endless shunt revisions or heel cord lengthenings.

The problem is that if we don't resuscitate 23 to 25 weekers in order to prevent having survivors with significant disabilities, we also let some babies die who would have been normal or survived with milder problems. The Epicure study, recently discussed on Ex Utero's blog (the abstract is also reproduced there) looked at babies born in 1995 at 23 to 25 weeks gestation. At age 6 years 80% of them had some disability: 22% had severe disability, 24% moderate disability, and 34% mild disability. We can all agree there's room for improvement there.

But does that mean we shouldn't resuscitate 23 to 25 week gestation premies? It partly comes to a question of what the worth is of children with mild and moderate disabilities. For every case of severe disability you prevent by not resuscitating 23 to 25 weekers, you lose about three kids who would have had moderate or mild disabilities or been normal. For every case of severe or moderate disability you prevent, you lose one kid who would have been normal or had mild disability. I understand why people want to prevent cases of severe disability, but can you see why I'm a little uncomfortable if I don't resuscitate 25 weekers? I feel bad for the normal and mildly impaired kids who won't make it. They might not be the brightest kids in our world, and they might have a high incidence of ADHD and maybe even psychiatric problems, but they can enjoy life, and I think their lives have value.

Many will say it is the family's decision to make these kinds of trade offs, and to a large extent it is. But society has a say in it too, and there is a limit to what we let families do. For example, if a family asked me to not resuscitate a 28 weeker - who has a better than 90% chance of survival and about a 10% chance of cerebral palsy - and just let him die, I would refuse their request, and I think most of society would back me up on that. Where, then, is the boundary where I should acquiesce to the parents' request for non-intervention versus deny it?

We are usually saved from this tough decision because the fact of the matter is that very few parents ask us to not resuscitate their child. It's much more common for them to ask us to resuscitate a 21 weeker than to not resuscitate a 25 weeker, and, at least in my case, it's not because I'm sugar coating the information. But it's not surprising that most parents ask us to do everything, because it is so much easier than it is to say let my baby die. The former is almost the default decision; the latter takes a lot of gut wrenching thought and courage.


Anonymous Claire said...

do you think "easier" is quite the right word here?

5:58 PM  
Anonymous Helen Harrison said...

My own views were formed during community meetings to develop medical guidelines that took place in Wisconsin, Colorado, California, and several other states in the mid-1990s.

These meeetings were attended by parents, members of the clergy, the disability community, attorneys, neonatologists, nurses, and other members of the general public.

The consensus was that 26 weeks gestational age and/or 750-800 grams birthweight formed a sort of natural boundary below which the outcomes became so poor, the biological condition of the fetus at birth was so immature and precarious, and the treatments so arduous and painful, that parents should have the deciding voice about resuscitation and treatment.

The guidelines were issued and widely ingored in the steroid-induced rush to treatment of the 1990s/early 2000s.

More recently, Dr. Terrie Inder has shown a uniquely severe pattern of brain injury and abnormality in more than 90% of babies born <26 weeks. This further strengthens the case for 26 weeks as a sort of natural boundary that should be crossed only with fully informed consent of the family.

For parents to be fully informed they need to understand, among other things, the ways in which the medical profession uses terms like
"severely impaired,"
"moderately impaired," and
"mildly impaired."

I think almost any reasonable person, seeing my son Edward, would say he is severely impaired. He cannot leave the house, eat, dress, bathe, shave, or use the toilet by himself.

He will need 24-hour-a-day one-on-one care for the rest of his life.

And yet, by the EPICure standards (and those of most premature infant follow-up studies), he would be considered only "moderately" or "mildly" impaired.

For example, his level of cerebral palsy would be considered "mild" although it has required surgery and it impairs his ability to be fully ambulatory.

His level of mental dysfunction would be considered "moderate" because his IQ is 59. "Severe" cognitive disability refers to IQ scores below 54. "Moderate" disability is IQ of 55-69, and "mild" disability is a score between 70 and 85.

Normal is over 85, although many parents can tell you that their over-85-IQ preemies will never live independently.

As for the "mildly" disabled, how many people do you know with IQs of, say, 73, who are self-supporting and live on their own? Especially if they have such *additional* disabilities as "mild" autism? Chronic lung disease? or "mild" cerebral palsy?

I think a functional definition of handicap involving eventual ability to live independently would be much more meaningful to parents than the current system.

But if the current system is to be used, at least it should be fully explained.

I take hope in a recent article in the January 2006 issue of _Pediatrics_ [pp.22-29] by Kaempf et al. which embodies the type of practice I would personally want and the type the community leaders in those meetings wanted.

I applaud the physicians who wrote this article for practicing and encouraging family-centered, ethical, and evidence-based care.

6:57 PM  
Blogger Midwife with a Knife said...

helen harrison: I think the 26 week mark makes some sense based on the same arguments that you made. What I worry about as an obstetrician is that we're counselling these patients now, but with outcomes from 5-10 years ago and at 5-10 years of age at best for these kids. I can't tell you that the 10 year old 26 weekers who are born today or tomorrow won't be normal or have a higher chance of near-normality than they did ten years ago. This informational void makes counselling patients particularly difficult. Although generally the burden falls on the neonatologists more than it does on me.

7:02 PM  
Blogger Lisa - Mum to Mitch & Harry said...

Dear ND,
As the mother of twin boys born at 24.6 weeks and weighing 840g & 660g we fall within the gestational group whose resuscitation and treatment is often a source of concern within the Prem community.

I have read many comments from parents and other interested individuals who have questioned the decision to treat these elbw and premature babies. And before I had my boys I was certainly of the opinion that doctors were simply trying to push the boundaries of survival too far.

BUT (and here's the rub) when you are the parent of a baby which arrives far too early, there can be an initial drive to save your child regardless of the consequences. It is certainly human instinct to want to save and protect your precious baby. What is needed in my opinion is ongoing communication between the medical professionals and the family about the likely outcomes for the child.

Some parents are simply going to want everything done for their child and will not be convinced otherwise. While other parents may make the decision to discontinue treatment.

Somewere in between those polar opposites is where my husband and I found ourselves. Faced with Mitchell's unknown infection which subsequently was diagnosed as CMV in the gut, we were advised he required an emergency appendicectomy and bowel resection. The surgeon explained that if too much bowel needed to be removed he would be dependent on parenteral nutrition and would in all likelihood suffer liver failure and die within a few months. Somewhere deep inside me I knew I couldn't do that to my little boy and my husband and I agreed that if too much bowel was affected we wanted not further surgical interventions. And he would be made comfortable and allowed to die. As it turned out he had the surgery and after a lengthy time in hospital came home at almost 5 months of age with his twin brother.

As a former registered nurse I look at the research on the outcomes for these extremely premature babies and I wonder if the interventions and benefits outweigh the ultimate costs to the child and his or her family. But as a parent I am grateful that my boys were given the chance to survive.

mum to Mitch & Harry

7:07 PM  
Anonymous Long Time Listener said...

This is rather a sideways comment on today's topic but it kind of has a relevance I hope.
There certainly has been alot of posts flying across several blogs recently about the lives that are lived, loved and affected by prematurity.
People may have wondered why there has been such a high level of activity.
For what it's worth, my opinion is that blogs offer the first true chance for parents to engage with the neos. When in the NNU's, parents cannot engage - they fear that their babies may carry the repurcussions of diffuclt parents so they play the good parent game.
On the blogs, they have a chance to engage with the neos on the same level, assuming that the blog owner does not exercise the ultimate power of deleting posts.
The backlash of this is that the neos brave enough to stick their head above the cyber parapet can and probably will get it shot off. It won't be a personal attack - it will simply be a chance to vent at any neo brave enough to ask " how is it for you ".

Kudos to all of you who ask how we are and for listening to the answers. It does help to know that voices are being empowered.

7:40 PM  
Blogger terri w/2 said...

Long Time Listener - you read my cyber mind on this one! Yes, I was thinking the same - thank you ND for having the courage to stick with us through these challenging discussions!

I think the 26 week cut-off is a good start as well - however, if a child has a large IVH and is on vent support, the parents should be given the option to w/d life support even if above 26 weeks. I've seen just in my very rural area a number of survivors of extreme prematurity and grade IV IVH, and these kiddos are a mess, and suffering so great.

8:06 PM  
Blogger The Preemie Experiment said...

Dear Neonatal Doc,


I have more to say and will comment soon but wanted to add, regardless of the different views we all express, I am thankfull that you have given us respect by listening.


8:38 PM  
Anonymous Chris and Vic said...

Neonatal Doc, I am impressed that you cannot get some of the comments off your mind, and I, too appreciate this sign of sensitivity.

But you cannot exercise selective sensitivity. You cannot allow yourself to wonder about the 23- to 25-weekers who you might see fit to let go; and NOT wonder about Ed, who is grown, and Terri's girls. You simply must be sensitive to all, without favoritism.

Chris and Vic

8:52 PM  
Anonymous Helen Harrison said...

May I add my thanks to the growing chorus, Neo Doc! These are very important discussions and you are brave to undertake them.

To midwife with a knife:

Outcomes of some preemies may change with innovations in NICU care.

However, the most recent improvement in the stats for ELBW preemies was the result of *stopping* a harmful treatment (steroids) which has simply taken us back to the CP percentages of the 1980s.

Any improvement over the stats from the late 1990s is good.
However, cognitive outcomes have not improved during this period.

And there is one major limitation that will not change, whatever the state of NICU care, and that is the underlying condition of the fetus born <26 weeks.

Here is how neonatologists Betty Vohr and Marilee Allen described it in their commentary to the EPICure study in the New England Journal of Medicine:

"Only 20 percent of these children had no neuromotor or cognitive disability. Many children who had no appreciable disability at 30 months had evidence of disability at 6 years of age. This outcome probably reflects the increasing complexity of cognitive demands during childhood.

The significantly lower scores for processing skills among the extremely preterm children at six years of age, as compared with the scores of their peers, arouse concern about challenges that require higher executive-functioning skills and about how these children will function in middle school and high school and as adults...

We must step back and ask why these children have such a high risk of neurodevelopmental sequelae.

Infants born at between 22 to 25 weeks of gestation are fragile and vulnerable, with immature organ systems.

Their skin is gelatinous, and they breathe through terminal bronchioles because the alveoli have not yet formed. They are at high risk for brain injury from hypoxia and ischemia and undernutrition, as well as for sepsis, which starts the cascade of events that increase the risk of brain hemorrhage, white-matter injury (periventricular leukomalacia and ventriculomegaly), and poor brain growth, and for subsequent neurodevelopmental impairment.

Active brain development occurs during the second and third trimesters, with neurogenesis, neuronal migration, maturation, apoptosis, and synaptogenesis. The immaturity of the brain at 22 to 25 weeks of gestation makes these extremely preterm infants particularly vulnerable.

Recent magnetic resonance imaging studies have shown decreased cerebral tissue volume, regional abnormalities of the brain, and decreased complexity in the cortical and surface area in preterm children studied at eight years of age, with associated alterations in semantic processing and visuospatial processing. Specifically, decreased sensorimotor and midtemporal cortical volumes were associated with low scores on full-scale, performance, and verbal IQ testing.

These findings suggest that some of the neurodevelopmental impairments identified in extremely preterm children may be difficult to prevent because of the level of brain maturation at birth."

And back to Neo Doc:

It isn't a question of "worth" saving. Our children are priceless.

It is, instead, a question of how much suffering a family is willing to put a fetal infant through to achieve an outcome of dependence, and often not-so-happy cognitive impairment and illness.

Family outcomes (as graphically described on "the preemie experiment") also matter.

I hope well informed parents can be allowed to make decisions for babies <26 weeks.

9:23 PM  
Blogger abby said...

The problem that we parents of under 26-weekers have is that, other than broad statistics, we don't have a lot of information about our specific children until after they are delivered and intubated. I agree with everyone's comments that this is a difficult process and personally I wouldn't wish it on any body. But after a day of playing with my now 4-month old 23 weeker whose vision is good, hearing is great, who is getting ready to roll over and sit independently and who plays peek-a-boo like a champ, I cannot imagine not having tried. I think that we need to take it one case at a time. Had our daughter had a massive brain bleed, seizures, etc, we might have made a different decision than we did. We certainly know that she is 'at risk' for neurological or psychiatric disorders such as ADHD or anxiety (though she does seem way too social to have autism), and she might manifest developmental delays down the road, but the thing is that, had we only used a set of admittedly frightening and arguably on target (at least for the neurological sequelae) statistics to guide our course of action when my partner went into hard labor, I would have missed out on getting to know this wonderful little girl who smile makes me melt.

PS--Add my voice to the chorus of thanks, Neonatal Doc.

9:38 PM  
Anonymous Anonymous said...

I just don't want to see the burden of children with disabilities, be they classified as mild, moderate, severe, or what-have-you, become overwhelming to society to the point where the needs of these people cannot be met. I don't want to see people with borderline IQs, physical disabilities, psychological impairments, and the like that need care living on the streets or living with substandard care.
The fact is we are already reaching a point where state programs and federal programs are not meeting the needs of adults with disabilities that prevent living independantly. There was recently an article in a PA newspaper (I wish I had saved it) that spoke of a program for adults with mental disabilites. It has so many participants that the only way to get into the program is for one of the current disabled users to die. In the meantime, these children/adults/young adults and thier families struggle to find proper care.

Nobody should have to live like that.

The problem is that in an age where we are pushing technology to it's limits to keep people alive even when good outcomes are known to be unlikely, we are seeing a rise in those who need intense care. Infertility treatments, low birth weights, accident survivors, extreme preemies, and others do take a toll on society. I personally don't mind paying a few more tax dollars to help support those who need higher levels of care.. but at some point the demand may outstrip the ability of the government to pay (or their willingness to pay) and then what happens? What happens to those disabled adults left behind? What about those disabled children that are in foster care?

It would kill me to be the parent struggling to make arrangements for the future of my disabled child.

10:20 PM  
Anonymous Anonymous said...

Where reasonable people agree, legislate. Where reasonable people disagree, the choice should be up to the individual. In this case, the parents. But I find this principle useful across a wide range of ethical issues.

10:43 PM  
Blogger Jacqui said...

I have a problem with the value being placed on children's lives who have severe and even moderate disabilities throughtout this debate which seems to keep on going.

Helen Harrison wants parents to be fully informed then goes on to state how misleading the classifications can be. I understand the need to state the negatives, but shouldn't these parents also be told that a child with a disability still brings joy and love to his/her parents each and every day. That you learn to appreciate the small things in life so much more.

I do agree with leaving the decision to the parents and for a full disclosure of the implications of prematurity. I don't agree with making a mandatory decision for premature infants less than 26 weeks gestation. We seem to be making an automatic assumption that people with severe disabilities cannot particpate and contribute to society and this is not the case.

11:03 PM  
Anonymous Helen Harrison said...

To Jacqui:

No one is placing "value;" no one is negating the "joy" that is part of the life of any child; nothing is "mandatory."

What I am suggesting is that parents be given the complete story and be allowed to make a choice based on their family values when their fetal-infants are born <26 weeks.

11:09 PM  
Blogger terri w/2 said...

Anonymous said. .said "I just don't want to see the burden of children with disabilities, be they classified as mild, moderate, severe, or what-have-you, become overwhelming to society to the point where the needs of these people cannot be met. I don't want to see people with borderline IQs, physical disabilities, psychological impairments, and the like that need care living on the streets or living with substandard care."

It's already happening in many states. I live in a state that has historically been known to be a leader in the nation for providing care for the disabled. However, since the birth of my girls (25 weeker twins) who are now 21, there has been an incredible change. There are waiting lists for services, not enough respite care for families, cuts in programming across the board, few services for disabled adults, cuts in special education, institutional closings and on and on. The burden of care sits squarely on the parents' shoulders and as the years pass, the burden is worsening.

We are saving more and more infants, but not advocating for increased spending for their LIFEtime of care.

Several years ago, I visited an institution to scope out options for my severely disabled daughter's care after age 19 - the institution which is famous for housing a former presidential sibling was amazingly decrepid - cracks in the walls, paint peeling, general obvious disrepair. There was no way I could place my child there. I was struck by the contrast of the modern day NICU to what awaits some of the NICU graduates upon reaching adulthood. .it isn't pretty.

11:39 PM  
Blogger The Preemie Experiment said...

Terri w/2 wrote: "I was struck by the contrast of the modern day NICU to what awaits some of the NICU graduates upon reaching adulthood. .it isn't pretty."


This is one of the most profound statements I've ever read.


1:59 AM  
Anonymous Claire said...

Anonymous’s maxim that when reasonable, and reasonably well informed, people reach polarised positions legislation is a bad thing is one I heartily endorse. But as I have said in earlier comments, the function of rhetoric is to influence the decisions made by reasonable people, and, at it’s most effective, to make one position seem more reasonable than the other. In this particular debate it seems to me that some strong propositions have been put forward that are difficult to argue against, but which lead to some highly dubious conclusions. The first of these is that suffering is a bad thing. Well, yes. If these tiny infants are to suffer painful and extended treatment and the outcome is uniformly disastrous, then of course it should not be attempted. I believe that the dilemma is that it is, sometimes at least, attempted because there is a reasonable chance, or at least A chance, that the outcome will be beneficial – and it is not yet possible to be certain in advance what the outcome will be. So, as you indicate in your post, this proposition would have to be re-worded as: in order to be certain that no infant would suffer devastating life-long consequences, x number of infants with a reasonable chance would have to be allowed to die. The next proposition is: disability is in itself a bad thing, costly to society at large and resulting in inevitable suffering.. Neonatal intensive care is responsible for an increase in the disabled population and consequently it will grow to unmanageable proportions. This one really interests me. Helen Harrison pointed out with approval that, given improved prenatal testing, 80% of Down’s syndrome fetuses are aborted, with similar figures for Spina Bifida, and presumably other genetic disorders. Add in other improvements in obstetrics and infant care and presumably far FEWER damaged babies are born. I would be interested if anyone can quote reliable statistics on this. The question then becomes can and should society – and medicine – encompass this? I have read – no idea if it is true – that in nature, animals will turn on and destroy a weak or damaged specimen. I would like to believe that homo sapiens had a little more compassion. Yes, dealing with a damaged child is hard, but sometimes it is the lack of decent resources that makes it hard, not just the condition itself. I fear a consensus based on ignorance that believes that wanting your child to survive is based on blind optimism or wilful stupidity. Oh, and as for ADHD, according to Wikipedia, the prevalence is 3-5% in the general population and “there is disagreement if a diagnosis denotes a genuine impairment/disability or simply serves as a label for different but normal behaviour”

5:40 AM  
Blogger AtYourCervix said...

I don't think we'll ever have the "right" answer regarding what care and at what gestational age, and where we should be placing cut-offs for resuscitation.

Where I work, we are *supposed* to not resuscitate any baby below 24 weeks gestation, or under 500 gms if gestation is unknown.

However, I have recently seen a 23 6/7 week gestation fetus vigorously resuscitated. The parents wanted "everything done". The NICU doc said to me that she would only intube and provide PPV, and give surfactant, in the delivery room, and that she would draw the line at any chest compressions or cardiac stimulants. The parents were aware of this.

I have also seen a 23 5/7 week gestation fetus where nothing was done.

The differences in the 2 cases - besides 1 gestational day - was that the first baby (resuscitated) was more than likely septic due to chorioamnionitis, and the 2nd baby (not resuscitated) was an emergency c/s for an abruption.

Both babies were managed by different neonatalogists as well.

How do the NICU docs decide which to resuscitate??

My thought would have been - no resusc for baby 1, but full resusc for baby 2 (good heartrate, just needed intubation and airway management at birth, if that baby would have been resuscitated).

However, going strictly by gestational age, I would go a step further and say no resuscitation for either, since they are both below 24 weeks.

I just don't know what the answer is.

9:38 AM  
Anonymous medrecgal said...

As a former 34-weeker with significant cognitive disabilities, I had to put my 2 cents in on this whole hornet's nest of issues. 30-some years ago, when I was born small and very sick, the general consensus was that I should be allowed to die because there was a good chance I'd wind up mentally retarded and low-functioning (thanks to progressive hydrocephalus). My family, however, did not buy into this argument from the "experts"; they insisted someone at least try a shunting procedure to see if it would help and give me at least a shot at life. (Notice I didn't say "normal life".)

There was, of course, no way to know if it would work or not; however, to know there were actually physicians who decided my life was not worth it because I could potentially be severely disabled was astonishing, to say the least. So there are some times when the parents know better than even the experts...thankfully mine would not accept the pessimistic view they were hearing.

My life is far from perfect; however, it is certainly better than what they predicted. Sometimes it's not the literal, physical size (or gestational age) of the neonate in question that's really relevant...it's more of a "how much will to live does this baby possess?" question. Guidelines are nice, but I'd think it would be more appropriate generally to take each situation on a case by case basis, considering factors above and beyond size and gestational age. Hopefully that's what usually happens. Even from reading this blog, I see the value in this concept.

10:58 AM  
Anonymous Future of Hope said...

As the mother of an NICU survivor with an uncertain future, this topic does hit home. My son was a 26 weeker, so gestation-wise he was above the cut-off being discussed, but he suffered a bilateral III/IV IVH 3 days after his birth.

The decision to resuscitate, as well as the decision to continue or discontinue care should be an individualized, case by case decision. Bottom line, is the baby trying to live, or trying die? Is the 23 weeker born with a heartbeat, attempting to breathe and cry? Then HELP them, support can always be discontinued if the condition deteriorates. You never have the option to go back an hour later and resusitate.
Is the infant with the massive bleed unstable, seizing, and requiring full support? Or is he/she moderately stable, and progressing otherwise normally on his/her gestational course? The first is trying to die - the second is not. In my personal opinion, the choice of what to do is obvious in both cases.

This is a tough, tough question with no easy answers - Thank You, for having the courage to ask it.

12:02 PM  
Blogger Candy said...

I have yet to weigh in on this topic, but today feel compelled. Reading some of the comments are quite upsetting to me. Some leave me with the feeling that you consider these micro-preemies as something abstract out there and a burden on society. These babies are parents' children, parents' hopes, parents' hearts, etc. You cannot have this discussion, in my opinion, without taking this isn't consideration.

I am not medically educated and can't quote stats and studies. I am a mom of 25 weeker that lived 2 weeks. She died of NEC. However, before the NEC hit she was doing fabulous. She deserved every shot at life!

In addition, I personally know several more micro-preemies:
1 - Twins born at 23 wks. One weighed only 15 oz. Both survived. The smallest does have some pretty significant disabilities including complete hearing loss (now has a cochlear implant), vision loss, and CP. But, she's happy, full of life, talks and plays. The joy of her parents. The kiddos are now 4 years old.
2 - Trips born at 24 wks, also 4 years old. Only one has any disabilities to speak of. He has CP and vision problems.
3 - 26 wk twins, now 4.5 years old. One has very mild CP and will absolutely talk your head off. The other you would never tell know that he was so premature if you weren't told.

Resuscitate?? ABSOLUTELY! I think it's ludicrous to make a blank statement that all <26 wks should not be resuscitated.

12:24 PM  
Anonymous Helen Harrison said...

To Candy, who said:

"I think it's ludicrous to make a blank statement that all <26 wks should not be resuscitated."

Please rest assured, no one has said that!

12:37 PM  
Anonymous medrecgal said...

Another thought I had when rereading your post: you described how by using the guideline not to resuscitate babies of a certain gestational age, you may very well let some die who could have wound up "normal" (i.e., not seriously impaired). This made me think of the times when I heard (many years later, as a teenager) from my doctors about how when you undertake the care of sick premature babies, you're really taking a gamble because you don't know--even with all of your education and experience--how a particular baby will do. So can you really say "treat none" or "treat all"? I don't think that's possible. Some of the sickest survive relatively unscathed; some who seem OK wind up with significant morbidity...it's a tough call, indeed. Perhaps it's a good thing I didn't wind up going to medical school after all...I could very well have been too biased by my own experience to make sound clinical judgements in certain cases. Though there was also suggestion that it would have made me a better physician.

12:55 PM  
Blogger Heidi said...

When we said we wanted only comfort care (anticipating a very premature arrival) our doctors were supportive. They were upfront with us about the risks and realities of preemies, we sat down several times for consults with the NICU and we read blogs of micropreemies and anything else we could get our hands on, to help us get some glimpse of the reality. We planned a funeral, we tried to figure out how to tell our 3 year old that the baby brother he could feel kicking inside of Mommy wasn't coming home. Then the weeks passed and our feisty little boy kept growing and we decided just maybe we needed to give him a chance and see what he did with it. I was admitted at 22 weeks gestation and given the steroid shots and told to try and stay pregnant. The first day he was considered viable, Bennett decided it was time to show up.

More than once a mother has told me she lost a baby at 24 or 25 weeks, after being told there was no chance of survival. Then they see my 23 weeker running around and wonder why they were given no hope.

The choice was ours, and I am grateful. I knew it was a gamble, we were told 50/50 chance of survival and 50/50 chance of severe disability if we could get to 23 weeks. IF we could... but after spending 12 weeks hemorrhaging, expecting to miscarry at any moment, the statistics had become meaningless.

We had literally months to make our choice, to research and ask questions and pray. I suspect most preemie parents are asked to make the decision to aggressively treat their preemie or not shortly after they've learned that baby is about to arrive and they need to decide RIGHT NOW. They are in shock. I was discussing burial plans for a child I could feel moving inside of me, and remembering that still makes me shake - talk about serious shock and denial and inability to think rationally about anything! I think it's understandable that a parent, in the midst of the horror of a premature delivery, would beg for their child to be saved. They often don't have the luxury of time to consider the consequences of their choice. Even those of us that have already made our decision can't yet predict the long term outcomes.

Bennett is now 2. If interested, you can read about his arrival & NICU stay in our blog archives (through my profile.)

2:31 PM  
Anonymous sam's mom said...

I am the mother of Samuel, born at 25 weeks gestation.
Because the preemie in question is the focus of every day of my life, the statistics are a minor consideration to me, rather than the driving force.
Still, they are relevant. At 25 weeks, my child was given a 20% chance (give or take)of surviving without disability.
To the clinical staff, and professionals, these are terrible odds. As such, we had to fight to get Samuel admitted to NICU in the first place.
When we encountered complications, we had countless meetings in which I exercised my right to make an educated choice, based on the statistics - which means I got to argue again and again to continue treatment.
I believe these discussions are important. Our premature children suffer immensely in the early stages, and some do not survive.
Life for the family of a premature baby may never be "normal".
But I'm continually hearing discussion defending the family's right to choose to discontinue treatment.
My personal experience suggests that this right is alive and well today. perhaps someone needs to defend the right of a family to choose to continue in the face of bearable odds (1 in 5 have no disabilities at all!)
I understand it's a complicated issue. I just wonder where our familiy's experience fits in?

8:20 PM  
Anonymous Helen Harrison said...

To Sam's mom who asked:
"I just wonder where our familiy's experience fits in? "

If your son is at least six years old and has no diagnosed disability, then you fit into the 20% figure.

(That is, 20% of NICU *survivors*; the stat for *intact survival* using *live births* as the denominator is lower.)

10:28 PM  
Anonymous Stine said...

Hello. Our son isn't extremely premature, he was born by c-section at 30+1 weeks, but he could have been, since my waters broke at 18+3 weeks, and we were given no hope.
I refused to give in, though, and since there were no infections and the rupture probably was due to the amnio I had 4 weeks earlier, I was "allowed" to go on.
I miraculously managed to avoid infections for long enough, and after 22 weeks was given 1 cure of antibiotics "just in case", and later 2 treatments for Gardnerella.
We went through all the qualms that you discuss here. From "do we want a funeral" in the beginning (they were ready to kill him off and induce labour) to all the worries with regard to possible impairments, and possible extreme prematurity, at best. The fluid situation was never really resolved, but Baby and I managed to produce enough between us to keep the levels acceptable, although I kept leaking throughout.
At 29 weeks, I lost was was left, and he was lifted out at 30+1. All 1640 grammes of him. He was breathing, and was put on CPAP, and eventually had a pneumothorax on one side, that resolved itself in a couple of days. 7 weeks in the neonatal unit, and 34 days on CPAP... But we got him home in the end, and nothing seems to be wrong with him as yet. Nothing. He doesn't even get colds.
I wish I had found your site at the time - I was an information junkie at the time...
Keep it up, for all those in search of info!

9:42 AM  
Blogger PushMama said...

I'm struggling with a related situation right now with a patient.

Oh and I love your blog...been lurking for a while.

1:28 PM  
Blogger neonataldoc said...

Long time listener, I think you are correct about blogs being a way for parents and neos to engage each other. I don't have these kinds of conversations with parents at work. And thanks to all for the kind words. I'm happy to listen.

Chris and Vic, I do worry about kids like Ed; but I also worry about the kids that jacqui describes, ones with disabilities who bring joy to their parents every day.

I wish I had more time to write, but it's a busy week. More some other time! Thanks for all the comments.

8:00 PM  
Blogger Stacy said...

I don't know what the right answer is, either. my cousin is severely mentally disabled (not as a result of prematurity) and I see the strain it has placed on her family. If parents are fully informed about the chances of certain disabilities, I think the choice should be up to them whether they want to take them on.

And yet, my dearest friend is a 28-weeker who, based on her birthweight and the year she was born, had less than a 50% chance of survival. other than some minor hearing and asthma problems, she's perfectly fine: holding down a great job after doing brilliantly at college, and more importantly a kind, funny, amazing person who brings so much to the world.

And so I have a really hard time balancing the two stories. on the one hand, how could I demand that parents care for a severely disabled child? but on the other, I can't fathom what my life would be like had my best friend not been a part of it.

10:38 PM  
Blogger Kristina said...

Funny. When I was going through the premature baby thing, I felt all the doctors were much too negative! My water broke at 20 weeks, and I was told that the best thing would be to abort our baby. Then I was given a laundry list of probable outcomes...none were what I'd call positive. And boy am I glad I didn't listen to those doctors, because today I have a healthy, beautiful daughter. (She ended up being born at 25 weeks.)

2:11 AM  
Anonymous Anonymous said...

I am a parent of a 24-25 week premie who is 13. He has cp and ld. He is Joy and has changed my life, but we constantly struggle financially to do all that we need for him. These kids are flooding the Spec Ed System. If docs want to save these kids, there needs to be a much better system in place to help support these kids--especially for middle class families who getting limited support financially and are expected find things on their own.

If these systems were in place, then we would see better outcomes for these kids. They don't stop being premies after they leave the hospital.

4:51 PM  
Anonymous Anonymous said...

I personally think it is absolutely irresponsible for the medical community to save these micro preemies. I am the mother of 24 weeker micro preemie twin boys. My one son died after 19 days of suffering and my other son spent a total of 9 hellish months in a NICU and 3 additional months in a Rehab center. He is home now and the hell is still not over with. It is never ending. I wish I had known DETAILS about what could happen instead of getting some meaningless statistics. I love my son so much but I would have made a totally different decision had I only known what was in store. I would have made a dignified and kind decision when both my sons were born and spared them all the agony not to mention the agony that my family has gone through and is still going through this very day. I am sorry but micro preemies are just not meant to live. Nature has dictated that and we are going against nature.

11:17 PM  
Anonymous Anonymous said...

Both of you are full of it. A baby is a gift from god and everything should be done to save it

1:15 PM  
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11:45 PM  

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