Monday, January 08, 2007

Outcomes

The January issue of Pediatrics has two articles about outcomes of extremely premature babies and a commentary about them. An article from Finland looks at the outcomes at 5 years of age of about 500 babies born in 1999 to 2000 weighing less than 1,000 grams (about 2 pounds, three ounces) with an average gestational age of 26 weeks. 12% of them had cerebral palsy and 3% were blind. In an earlier group of similar babies, the same authors found that 9% had cognitive disability and 4% had hearing disability. Another article from Ohio looked at babies of the same birthweight born in 2000 to 2002 and noted that their outcomes at age 20 months were improved compared to similar babies born between 1982 and 1999. 23% of them had neurodevelopmental impairment, defined as neurosensory impairment (cerebral palsy, blindness, or deafness) or mental developmental index (think of it as sort of an IQ measurement) less than 70.

Neither article looked at things such as school performance, but the commentary relates that even in kids with birthweights less than 1,000 grams who escape major neurodevelopmental disability, more than 50% "struggle in school performance and have difficulty with academic competitiveness."

As you may have noticed from the comments on my "Ignored" post of ex utero, a practicing neonatologist, and Helen Harrison, a mother of a disabled NICU survivor, one can take an optimistic or pessimistic view of outcome statistics. 77% of them don't have major neurodevelopmental impairment? That's good. More than 50% of them have school performance problems (and many have things such as ADHD and emotional problems)? That's bad. Some studies suggest that NICU graduates with neurodevelopmental problems rate themselves as having a good quality of life - that's good. Another study says that more that 40% of premies less than 33 weeks gestation will not be able to live independently as adults - that's bad. Anecdotally, too, we know that some kids with impairments are a huge burden to their parents, while others are the light and joy of their parents' lives. (Some kids are probably both at the same time.)

What do we do with these outcome statistics? Some things we can all agree on: We should use them to give potential NICU parents honest information. We can follow NICU graduates carefully for neurologic problems so interventions can be started as early and optimally as possible. Also, the data show we need to continue to try to improve our care of tiny babies, especially as it relates to optimizing their brain development.

It's when we start to use these statistics to make decisions about resuscitating or not resuscitating very premature babies that things get sticky. Not resuscitating a baby because there is a high chance of death or severe neurodevelopmental impairment, as is the case with 22 to 23 weekers, is one thing (although, technically, in the U.S it's illegal to discriminate against someone on the basis of handicap), but should the fact that they might have school performance problems be used to argue against their resuscitation? Should a child's increased risk of attention deficit disorder play a part in that decision? I'm not sure that I'm ready to slide that far down a slippery slope.

63 Comments:

Anonymous Helen Harrison said...

The Vermont-Oxford data (babies born between 2000-2003,with a cohort of well over 2,000 micropreemies,huge multicenter study) shows that the risk of death and severe disability is well over 50% in both 22-23 weekers and 24 and 25 weekers. Why is it OK to allow parents to decide on resuscitation in one case, but not in the other?

And, as you point out, these stats are just what can be reported in infancy.

If the trends shown in other studies hold up(Walther et al. cited earlier, or O'Brien et al._Arch Dis Child_2004;89:207-211) the infancy data is just the tip of the iceberg of serious problems.

We should probably multiply the infant disability rate by 4 to get the percentage of infants who will not live independently as adults. (Of course that would give us well over 100% of micropreemies)

As for the studies "showing" good quality of life by self-report, I was a consultant on that research, and it was biased. For one thing, the same doctor who "saved" the babies -- all at a single center -- directed the research. But that's not the half of it.

Please see my article on this research: "Making Lemonade: A Parent's View of the Quality of Life Studies" _Journal of Clinical Ethics 2001;12:239-250.

Also see my article on quality of life studies in general (on Virtual Mentor - and online medical ethics journal).

It is important to remember when discussing self-reported QOL, that adults paralyzed and ventilator dependent give themselves very high quality of life scores -- much higher than the medical staff treating them give to themselves personally! Imprisoned convicts give themselves higher scores than the general population gives themselves! Students who are failing in school report "higher self esteem"(comparable to QOL measures) than do successful students, etc.

The counter-intuitive results of such studies have pretty much discredited them among researchers.

Recently, prematurely born individuals have been shown to lie on such studies in order to appear more socially acceptable. (see Allin et al. "Personality in Young Adults Born Preterm" _Pediatrics_2006;117:309-316.)

Prematurely-born adults in QOL studies have personally told me that they lied.

Comparing the stats for their self-reports on issues that can be independently verified (such as their actual functioning) shows very significant discrepancies with reality.

Anyone interested in pursuing this further who has any trouble accessing these articles, please contact me at Helen1144@aol.com

Helen

7:33 PM  
Anonymous Anonymous said...

Neonatal doc, I am re-reading your last paragraph . . . wondering who is the "we" you talk about. You say "we" should not use the stats to decide on who to resuscitate. You call this a slippery slope upon which YOU are not willing to slip-slide away.

It is it not about YOU, the doc. It is the family-we. The parents. They know their family values, their capabilities. They have their own lights to guide them into making the best decision they know how.

I seriously doubt that families take into consideration age discrimination arguments. These arguments are more legal than ethical, to my way of thinking. Your legal advice may be to avoid age discrimination, but families cannot relate to that argument, I don't believe.

Rather . . . parents are asking themselves, IF they are given correct and full disclosure, "Can I do this? Can I manage? Can I give up my career? Can we live on one income? What about the other children? Will we have to give up our home in order to afford raising this child? Will we have to move closer to a metropolitan area to have access to the specialists? Will we max out our insurance? Will we declare bankruptcy? Will we divorce? Will we be on Medicaid or on welfare?"

There are a lot of ex-preemies coming at the medcial system and at the educational system, projected to bring both systems to their knees. Only when people with disabilties are visible and well-accepted in society---welcomed, in fact---can we tolerate this growing minority. Only when societal mores change--when personal value to society is based on something other than being fully intact (with the ability to get good grades in school, go to college, get a good-paying job and live independently), can we cavalierly bring kids who will not be intact into that society.

For example, I would wish that I could be my child's caregiver. I would give up my career, but I would need to have health insurance from somewhere in order to do so---that is even more important to me than salary. Solution? Give healthcare to anyone willing to be a foster parent or to adopt a special needs child---even to those willing to do respite care for those children, a service sadly lacking everywhere. Certain mothers would then stay home and raise their special needs/disabled child.

Another example: Find or create part-time jobs that match a person's abilities. As ex-preemies with disabilities grow up and need to transition out of the schools, these jobs will be available for them. In my community, there is a young man who works in a greenhouse. He LOVES flowers and plants and has a "green thumb." He doesn't hesitate to do the weeding and digging, the "manual labor." He is one happy guy. He had the option to stay in school till age 21, but this job came along . . . and it was a perfect fit for him. The only problem for the family is transportation . . . This situation fits a young man with disabilties into his neighborhood/into society, makes him visible and appreciated. He is NOT in any way to be pitied nor to be seen as a freak-show.

And there is a 21-yr-old with spastic quad CP who works as a way-finder in a large hospital, taking patients from the door to their destination. In amazement, visitors follow along behind her motorized chair, as she leads them across bridges between buildings, through tunnels, etc.

There is more to life, if we are looking for creative solutions, than being a greeter at Wal-Mart or doing janitorial work. Young adults with disabilties are no longer cute babies; but they can be visible, accepted and valued among us. We voted for saving them. Now we must integrate them among us.
CAK

8:45 PM  
Blogger abby said...

As a mom of a 23 week surviving twin, I totally understand where Helen Harrison is coming from, but I would caution the following: Statistics can be a nice guideline from which to approach matters in the abstract, but decision-making needs to proceed from particulars. Once we start to break things down to the individual level, stats fall apart. Even if we apply filters such as: did the micropreemie in question have an IVH, and was it a bad one? Were there significant incidents on hypoxia? Is there BPD or ROP involved? Did the child pass hearing tests or not? there is no way of determining outcomes from the outset. While, on the aggregate level the child starts out in a much worse place than a 40 week, full-termer, there is no way of saying that a full termer won't have ADHD, hearing issues, etcetera. I think this is why we need to be careful about using statistics as a guide. And, on the question of quality of life, I think that's a moral and very subjective issue, and not one that can easily be quantified and rendered uniform across any population.

OK, so where to go with this? Well, first, I would suggest that there be made available much more in the way of diagnostic services and follow-up care for preemies, and micropreemies in particular. The evidence that I have is anecdotal, but it seems to me that the level of care out there varies tremendously. For example, my surviving daughter has been followed up closely by opthomologists after having a case of ROP that resolved itself without surgery. Other kids, who have had laser surgery, are seen less frequently or at all. This needs to be remedied to give these kids half a chance. The same is true with EI--parents 'in the know' and with high levels of education and who are pushy (like me) get services quickly; others, and perhaps also parents with kids in rural and less well-serviced areas than Philadelphia--where we live--do not. Given this, the outcome of two kids in virtually the same medical position could be very different. And then there is the murky question of how to adjust for the socioeconomic and educational status of parents--perhaps I am generalizing here in a way that is unfair, but parents who are educated and relatively-well off (and with decent insurance) will probably be equipped to do a whole hell of a lot more for their kids than young, underemployed, undereducated, and underprivileged parents. How do we get around this problem? There's probably no great way of equalizing the situation entirely, but universal health care and a federally-mandated parental leave system that allows one to take off from work without ending up losing one's home might go a long way in solving this issue. There is no magic bullet, but stlll, if we could equalizing the playing field a bit, that would be nice. But of course, then, one opens the awful can of worms of what it is worth to society to save or help a few kids, and I don't even want to go there.

Anyway, forgive me for rambling, but as usual, I do enjoy the thought-provoking posts, Neonatal Doc, and look forward to further comments on this issue.

9:21 PM  
Blogger Ex Utero said...

First,

of all the data bases, the Vermont Oxford typically has the worst in any given outcome category. It's large and it's representative of a lot of NICUs but it does not include the majority of large academic NICUs that specialize in the micropremie. They would be the "glass half empty" version when examining this issue. Many single centers exceed 70% survival to discharge without severe disability in the 24-25 week category today.

Second, nobody is arguing that we have a problem, perhaps even an epidemic of premies who are increasing the burdens on our schools and societal resources due to ADD, developmental delay and pervasive developmental spectrum disorders. But Neonatal Doc is right, you don't decide to shut down the NICUs because some children are imperfect.

I will say this. We have yet to have our ELBW survivors reach adulthood. They've really only been surviving in substantial numbers since 1997, so they're just now beginning to enter puberty. We will likely learn a lot in the next decade about what these patients can and can't do in their lives. Based on some that I know, I can guarantee that it will not be 100% of them that require assisted living. I know at least one little boy who is as normal at 5 years old as any I've ever known. In the mean time, I agree with ND - we have to err on the side of life, giving parents who can and will listen objective information about those infants who are on the edge of viability and letting them help us in those most difficult of decisions.

One more anecdote: I work with a neonatologist who is an ex premie. In his day, he was born at what then was considered the edge of viability. He lost all of his toes on one foot to a catheter (the dreaded cath toes phenomenon). Today he is a doctor and a damned good one (I say that because he was also my fellow and I trained him). He's a giant neon billboard of hope for what our graduates can become someday. I am not one of those fanatics who believes every child should be beat upon and forced to live at all costs, but I have seen the limits of viability shift many times in my relatively short career and I have seen NICU graduates go on to do great things. I know that is not the case for all graduates, and that a bad outcome certainly colors one's perspective on the data, but it needs to be balanced with the certainty that miracles in this business aren't rare - they happen every day.

10:54 PM  
Anonymous Helen Harrison said...

To anonymous (CAK):

Amen!

To Abby:

When looking at the near certainty of a bad outcome (as, unfortunately, is the case at 23 weeks) parents may want to gamble on their child being part of the tiny percentage (and we still don't know what that is) who will be able to function independently. Or parents may think the odds for independent life(plus the *certainty* of painful, experimental, arduous and iatrogenic neonatal care)is not worth it for the baby. I think both sets of parents should have the right to decide about whether resusciatation is the right thing to do, based on their family values.

The risks of severe problems at 40 weeks is extremely low -- at 23 weeks it almost certain.

To the group in general:
The stats Neonatal Doc has given us apply to babies who are about 26 weeks, plus or minus 2 weeks. Some of these babies may be as old at birth, gestationally, as 28 weeks.

Only a subset of these babies are actually micropreemies (born at or less than 26 weeks).

Again, micropreemies are the only ones who are considered to be in the ethical gray area, not babies over 26 weeks.

Also, it is important to realize that follow-up studies make artificial distinctions that do not make sense in terms of a child's eventually ability to function in the world.

For example, a child with an IQ of 69 will be said to have a severe handicap, whereas a child with an IQ of 71 is in the "only learning disabled, mild problems" category. This is nuts! Both of these children will almost certainly never live independently.

Definitions for problems such as CP are also highly variable from study to study. As part of the PORT project in the late 1990s, I was among a group that tried to make sure we were all on the same page when it came to CP diagnosis. So, we looked at film strips of preemies walking. There were children who could scarcely walk. Some of the researchers said it was definitely CP, whereas others, said "no, that's just clumsy child syndrome."

Many children who are eventually diagnosed with CP -- like my son --are *not* diagnosed in the early years. Same with autism, same with retardation.

The longer these children are followed, the lower their IQ scores. O'Brien et al. (cite above) followed a cohort of relatively big preemies(less than 33 weeks gestation) into adolescence. Between the ages of 8 and 15, the children's IQs *dropped* by 10 points.

Although65% were considered "normal" at age 8; at age 15, only 27% qualified as normal. The researchers concluded, "It is not clear whether [these findings represent] a genuine deterioration in neurocognitive function or...the expression of pre-existing cerebral pathology in an increasingly complex environment."

I tend to think it is the latter.

Abby mentioned socio-economic and educational factors. My husband and I are in a high enough SES that the Bush tax cuts have (or *should* have) helped us. My husband is a Harvard grad I am Phi Beta Kappa from UC Berkeley. We are both published authors. But our preemie son, despite all the love and money two well-educated devoted parents could give him, is still severely handicapped.

One could argue that it would be so much worse if he hadn't had these advantages, and I believe that is true, but it isn't enough. At some point these kids hit a biologic wall, and all the love and money in the world won't help.

Sadly,

Helen

11:15 PM  
Anonymous Helen Harrison said...

To ex utero:

The NICHD network data on micropeemies (which includes the major teaching centers) is at least as bad, if not worse, than Vermont-Oxford.

I think Jerry Lucey (editor of _Pediatrics_, and one of the founders of Vermont-Oxford) would be interested in your comments. I remember when he argued (to a group of parents) that, because Vermont-Oxford centers dealt with a more middle class population than NICHD, they would have better outcomes.

Live and learn!

11:25 PM  
Anonymous Anonymous said...

I think it is great to see so much discussion related to the outcomes of ex prems. There are so many different perspectives. My ex prem has CP. Would I change that - of course I would but I can't. She is so much more than the imperfections she has. She social, loving, empathetic, the list goes on. There is life beyond all the statistics. So what if she never does well in school - she is only being judged against an inflexible cirriuclum that requires a child to reach set goals at a set time. As long as she is doing the best she can, I don't have the right to be disapointed in her achievements whatever they will be. I know no school or medical system can ever fix her and I don't expect them to. I just want her to be included in the life she fought so hard for and to have the resources she requires to reach her potential.

11:36 PM  
Anonymous Helen Harrison said...

One more point: The 40% who will not live independently refers to babies born *between 26 and 32 weeks* gestation.

12:42 AM  
Blogger Lori said...

I have no statistics or medical expertise to offer, and after this comment I have vowed to myself to bow out of this discussion and others like it. I only have my personal experience of the loss of two precious 23 weekers, and for my own sanity and the well being of my living family I need to stop engaging my mind and heart in the endless questions of "what if?"

I simply want to ask this: and it is a largely rhetorical question. Where are all of you neonatologists and other medical professionals who are so gung ho and optimistic about resuscitating these babies on the edge of viability? You certainly weren't around when I was in labor at 23 weeks. I delivered at a Level III hospital in a major metropolitan city, and yet I was given almost no reason to believe or even hope that life saving measures would be successful with our twins. I have another friend (and not an anecdotal "friend", but someone I know personally), who delivered a 23 weeker at UW Medical Center in Seattle, and she too was told that it was not their usual protocol to resuscitate infants of that age, and they did not recommend it. A neonatologist was present at her son's birth and upon examination he reiterated that no, he did not believe him to be viable. They did not choose resuscitation. Another real flesh and blood friend, delivered 23 week old triplets at a Level III hospital in New York, and again, resuscitation was strongly discouraged.

My rhetorical question leads me to this then: so maybe it isn't right to draw a line and say doctors and families can't cross it. Maybe every case needs to be decided individually based on the baby and the baby's family. But in fairness to the families facing these awful decisions, doesn't there need to be some kind of uniformity of the information and options presented to them? It's unimaginably heartbreaking to leave the hospital without the babies you have spent months loving and preparing for, but that heartbreak turns to agony when you start to discover that maybe, just maybe there could have been a different outcome. That with a different doctor, or a different hospital, you might have been painted a different picture. There is nothing "fair" about that scenario either. So maybe there shouldn't be any hard and fast rules, but at least a reasonably consistent standard of protocol would be nice.

That's my final two cents... I wish peace to you all.

1:20 AM  
Blogger jmb said...

Yesterday, in my home city, Vancouver, Canada, sextuplets were born at 25 weeks and each weighing about 1.8 lb. They are in fair condition, 24 hours plus later. The chief neonatologist at the hospital (BC Women's)said that, in Canada, 25 week babies have an 80% chance of leaving the hospital, after an average stay of 100 days in neonatal intensive care. He did talk about all the problems they face, but was fairly upbeat, on the whole. Probably wanting to be so, before the press, for the parents' sake.
Luckily the cost of between $1000-$2000 per day per baby is not an issue for the parents under the Canadian medical system.

2:53 AM  
Blogger Preemie Mum said...

Here in the UK there will no longer be any attempt to save babies born at 22 weeks, and 23 weeks is still seen as a grey area.

http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_web_version_8_November.pdf

Between 22 weeks, 0 days and 22 weeks, six days of gestation, standard practice
should be not to resuscitate a baby.

Between 23 weeks, 0 days and 23 weeks, six days of gestation, it is very difficult to predict the future outcome for an individual baby based on current clinical evidence for babies born at this gestation as a whole. Precedence should be given to the wishes of the parents regarding resuscitation and treatment of their baby with invasive intensive care.
However, when the condition of a baby indicates that he or she will not survive for long, clinicians are not legally obliged to proceed with treatment wholly contrary to their clinical judgement, if they judge that treatment would be futile

7:54 AM  
Anonymous Anonymous said...

Jerold Lucey has had an ongoing conflict of interest between the VO and his editorship at Pediatrics. There are plenty of us in the business that wish he'd retire.

9:39 AM  
Anonymous Claire said...

Like Lori, I am finding it difficult to continue to engage here. It has been interesting to read the different perspectives, but a bit harrowing to realise the distance between my perspective and some of the others - interpretations, negative and positive, can be put on choices as well as on statitics. I didn't choose, but I have had to live with the consequences of choices that were made for me. My baby was fished out by elective caesarean at 34 weeks. If she had been delivered at 33 weeks, she would have avoided the stroke that ravaged her brain, but may have suffered other complications. In other words, my life is one big What If?, but I love her, and cannot think that way. My life - our lives - might have been different if I had had some say in the outcome. I have always believed that if I had chosen, and chosen not to avoid the almost inevitable still birth that would have come, I would only have been choosing a different What If, not a better one. I would have chosen all the what ifs Lori has to live with. Helen challenges, but does not change, my belief that my daughter's life has been worth living. I cannot escape the knowledge that her long term future could be dreadful. Both Lori and me feel that the decision was made for us by others, and that is difficult. I don't know if it is any easier if you make that decision for yourself. I know I believe that the cold statistics are not much of a help, and the only thing to go on. Evidence from personal experience doesn't get us very far either, as their isn't and apparently never could be, any consensus. Quality of Life and cost effectiveness are equally problematic. You have to make these decisions, other people live with the consequences. Solomon himself would throw up his hands here.

10:22 AM  
Blogger Ex Utero said...

Helen,

you talk about steroids in one post but then seem to be unable to factor in the trends over time. Things are improving. Most neonatologists are not comfortable with not intervening in a 25 weeker. If you break them out, many large single centers in the last couple years are around 80% intact survival in this group. This is where national data bases fail the public. We have to work within our individual center performance records and most of the large tertiary NICUs out perform the Vermont Oxford - period. And by the way, early postnatal steroid use was still rampant even then in Vermont Oxford Centers.

Likewise, the NICHD Neonatal network is only a small percentage of the academic centers and you're right, they are over-represented by the urban poor and they also under perform. All academic programs who have fellowships are required to keep benchmarks, so we know how we compare.

24 weeks is more gray but we're doing better there as well. We know that these two gestational ages are in play. Just as we know that steroids were a major factor in our outcomes ten years ago.

I'm not disputing that developmental deficits become more apparent as children get older. I'm not disputing that children from twenty years ago are much more affected than they thought they would be (a big part of that may be the neurodevelopmental effect of steroids). I'm saying that the same age group today has a much better discharge outcome (in fact it is so much better that these infants hardly even spend any time in the NICU any more - they go to intermediate care nurseries on CPAP). Of course the infants that used to be at the age of viability are going to do better. We're not ventilating them for weeks on end and giving them weeks and weeks of steroids like they used to do.

As for today's new age of viability, we don't know. You don't know and I don't know. We have to live with uncertainty and continue to do research. And yes, we have to find a balance between "when does the patient have rights" and "when do the parent's wishes prevail". What I object to is a tone in your posts that suggest we are somehow trying hide or obscure the facts. Neonatology is constantly adapting. It is one of the fastest moving fields in medicine (although it seems painfully slow to someone like me when I'm trying to convince my colleagues to stop using steroids and indomethacin together in the first days of life). Most neonatologists think that 25 weekers who are otherwise healthy, deserve a chance at life.

24 weeks is still debated, but the trends are rapidly placing them in the same category and I will admit that I am becoming increasingly uncomfortable with not resuscitating these often vigorous infants (better not to have the neonatologists attend in my opinion - if parents feels strongly about this). I am personably comfortable with not intervening in a 24 weeker if they come out and are not vigorous (i.e. make no attempt to breathe, have a fading heart rate and have no tone) and I have contracted in the past with parents to intervene if vigorous Vs let nature take it's course otherwise. 22 weeks, survival is absymal. 23 weeks, outcomes (at discharge) are also absymal but occasionally we have one discharged "intact". I would not have resuscitated my own children at 22-23 weeks (we had 3 term children but my wife and I had this discussion every time at 20 weeks). I don't recommend resuscitation at these ages to my patients. We sometimes do it at 23 weeks because parents ask us to (often associated with in vitro fertilization - which is another issue that we will have to face with regards to all of these changing outcomes. Nothing is a simple as you might think.) There are some neonatologists who feel strongly that because there are examples of 23 weekers who have done well that they should all get a chance at life and then let them self-select but they are a small minority (typically of the right to life persuasion but I know some who I respect).

Let me summarize by saying I do not object to informing parents that survival does not equal normal. In fact, I agree with that if parents are receptive to hearing it - with the caveat that many people are not ex-premies and are not "normal". I object to equating survival today with survival 31 years ago. Helen, your personal experience makes you an appropriate adovocate for this issue, and I respect that, but I fear it tarnishes your objectivity.

11:23 AM  
Anonymous Ann said...

Well said Ex Utero. I have followed Helen Harrison's work and thoughts since the birth of my own 28 weeker about 16 months ago. While I appreciate her advocacy so much and I have learned a lot by reading her work, I find only a pessimistic viewpoint in almost everything she says. I am well aware my 28 weeker could still face delays in the future, but as of right now he is developmentally on track and actually performing some problem solving skills above age according to his PT/OT.

I do believe Neos and perinatologists need to figure out how to do a better job of educating. When I went on bedrest at 24 weeks, I wasn't given any data and even though I am quite academically accomplished and could have looked it up...honestly it was all I could handle to just keep it together emotionally. Had I learned the info on 24 weekers I am not sure we would have saved our son had he been born at that point. But nobody really gave me stats...they just assumed I wanted the baby regardless.

Of course I was lucky enough to go 4 more weeks and get much better survival/outcome stats.

I guess what I find objectionable in your posts Helen is not the sharing of data which I appreciate, but the idea that data you don't agree with is somehow flawed but the data you do agree with is perfect. I feel for what you have been through with Edward. But it doesn't mean that every child's outcome will be similar. My child's ped, his neo, his PT/OT tell me everytime they see him that he just doesn't present like a 28 weeker. Caught up in size by age of 6 months and doing developmental things on time to date.

I appreciate the other side of the coin you bring, but also realize that outcomes vary widely.

Thanks,
Ann

12:47 PM  
Anonymous Helen Harrison said...

To Ann and Ex Utero:

Ex-utero has just dismissed the largest and most recent data bases of micropreemie outcomes (VON and NICHD) as irrelevent. And yet I am the one accused of ignoring the studies I don't like?

Astonishing.

Where, exactly, is the published, peer-reviewed data showing improved longterm outcomes in preemies! Please enlighten us!

The Ohio study quoted by Neonatal Doc (a single center study) shows a decrease in CP after steroid treatment was reduced. That is good. However it isn't a trend other studies are yet confirming (see the research from Finland).

The most prevalent seriously disabling condition in preemies remains severe cognitive impairment. That category remained the same in the Ohio study, even in the absence of steroid neuro-toxicity. The overall rate of abnormal brain scans remained the same as well.

Until the evidence is clear on improved longterm outcomes for micropreemies, parents should, I think, have a voice about whether or not their fetal-infants are enrolled in the ardous, painful, and uncertain neonatal experiment.

Why is it that some of you feel so threatened by informed parental choice in these circumstances?

2:36 PM  
Anonymous Anonymous said...

Ms. Harrison...
I don't think anyone feels threatened regarding parental input. But I have to ask, if it was an 8 year old who had a 30-50% of survival after some traumatic accident, I doubt there would be anyone who would not try to do all they can. As a pediatrician, I am an advocate for the child when he/she cannot advocate for him/herself. It is in this role that I think many Neos at least attempt to resus. those born at 23-25 wks. Giving the infant a chance to live and fight also gives the parents a chance to digest more information. Not too many mothers on magnesium can make an informed decision.

2:48 PM  
Blogger Sarabeth said...

Helen, Ex Utero didn't dismiss the VO and NICHD databases, he pointed out how they fail the public.

I've read your comments on this post and others. Your tone is extremely pessimistic. Perhaps you think you are just stating the data, but it is how you state the data.

I have a friend that gave birth to twin ELBW infants who was well-informed of all the possible outcomes (from not walking/talking to not every being able to drive to behavioral problems). She still wanted her infants to have the interventions.

And, this is just a pet peeve of mine--the term preemies is too cutesy.

2:50 PM  
Anonymous Anonymous said...

Ms. Harrison:

I don't believe anyone who has responded to you has taken issue with your belief in parental input. I believe they have taken issue more with the tone of your input. Do you really believe that 100% of micropreemies will never live independently? Where is your research on this? Obviously 100% would not be accurate.

I believe what the replies are saying is that while you have some very real data so does Neo Doc and Ex Utero. Also, you cannot summarily dismiss the anecdotal evidence of parents of real preemies.

You have done much to inform parents of preemies what to be on the lookout for. But there are plenty of reasons to believe a lot of preemies will go on to live happy, productive lives. Do you really think it is in a preemie parent's best interest to expect the worst their child's entire life? Or rather would the parent's time be better spent knowing what can happen, what they can do about it if it does, but also be allowed to enjoy their child?

3:21 PM  
Blogger Ex Utero said...

Helen,

just because a data base is large doesn't mean that it's all powerful or irrefutable. I'll give you an example in which I am an expert.

The Vermont Oxford tallies spontaneous perforations (SIP) only if identified during surgery or on autopsy. However, many if not most cases of SIP are managed by abdominal drain exclusively, ergo the world's second biggest neonatal data base (Pediatrix is actually the biggest) woefully underestimates SIP and consequently overestimates surgical necrotizing enterocolitis. The best way to assess the incidence of SIP is by having a standardized clinical definition that can be used at the bedside. Garbage in equals garbage out when it comes to clinical data.

With regard to the Neonatal Network, they do good work and I do think that their data is generally solid for the populations they serve, but using SIP as the example, they also under estimate it for reasons that have to do with not having had standardized definitions in place in their randomized trials until recent years. I am hoping that their data is going to improve when they finally get permission from the FDA for the probiotics trial.

With respect to these doom and gloom numbers and long term outcomes, there is a widespread sense among practicing neonatologists that we've already moved on from where we were when we produced the current adult NICU gradutes and the data coming out of Ohio reinforces that belief. The fact that Maureen Hack is associated with that data (who has for so long warned us about long term outcomes being worse than we suspected) is also reassuring.

I also don't think that most of us (or least I do not) feel challenged by parental choice in those cases where we agree that intact survival is so obviously murky. If anything, I am relived when I have parents who are willing to make tough decisions. I do feel uncomfortable telling parents that if I save their child they will almost certainly grow up to be severely afflicted (especially when I don't know that they will). I think it is appropriate to tell them that they will have an increased risk for neurodevelopmental and psychiatric problems and stratify it for each gestation and then let them ask for more information if they want it. I also think that no physician should ever take away hope unless he or she is absolutely sure there is none.

Peace.

3:48 PM  
Anonymous Helen Harrison said...

To anonymous:

As I've stated elsewhere on this blog, I think far too many children are, mindlessly and indiscriminately, put through medical ordeals that they do not want, and which their parents, if given the opportunity to object, would not want. Many of these children are former preemies -- and if you like, I can give some very gruesome examples.

Studies of the treatment preferences of critically ill adults show that the majority do not want resuscitation and aggressive treatment if the outcome is likely to be impaired survival. (See my posts under "Ignored" for the ref to the NEJM study on this).
Why should children be any different?

I have participated in community conferences held around the country in the 1990s to try to develop patients' rights guidelines. These were gatherings of political leaders, parents, the elderly, attorneys, clergy, ethicists, and intensivists of various sorts, including neonatologists.

Almost invariably, representatives from the community wanted more rights to help *avoid* care that they felt was abusive overtreatment. On the other hand, the intensivists insisted that they "had to" provide this care and that everyone really wanted it!

There was a particularly amusing scene at one of the meetings (in Appleton, Wisc.)in which the elderly audience banged their canes, shouted down, and booed an intensivist who argued in favor of no-holds-barred aggressive care for the elderly!

In the neonatal meetings, it was the *neonatologists* -- not the parents and community representatives -- who wanted to push the envelope further and call the shots regarding deicison making.

I recall the neonatologist at this meeting telling us we couldn't allow parents the right to refuse care for micopreemies because surfactant and *post-natal steroids* were greatly improving outcomes at their center!

I have heard similar proclamations from neonatologists since the late 1970s when I began work on the first edition of _The Premature Baby Book_.

For example, I was told (by Marshall Klaus at Case Western) not to include information on disability in my book because their research showed "90 % of these kids are perfectly normal."
(His own published data disproved this assertion.)

I was told by Roderic Phibbs at UCSF not to bother with my planned section on necrotizing enterocolitis because that problem was a thing of the past (just an easily correctible side effect of PDA), according to their center's statistics!

So I have to take with a big grain of salt, all the "new" enthusiasm about improved outcomes. As my friend and mentor Dr. William Silverman used to say: "Show me the evidence."


Helen

PS: An old Slavic proverb -- "a pessimist is really nothing but a well-informed optimist."

3:50 PM  
Anonymous Anonymous said...

i work with some of these children u save in a special needs school. some are in incredible pain and struggle tremendously, others are an absolute joy but tremendous work and require constant one to one.

yet if i had a child born prem i know i couldnt make that decision in the hope that my child would be ok. its a tough one.

4:14 PM  
Anonymous Helen Harrison said...

To anonymous:

Please reread what I wrote. I never claimed 100% of micropreemies would not live inependently. I merely said that trends evident in studies of VLBW children, if applicable to micropreemies, would give an (impossible)over 100% stat.

I don't know how many micropreemies will live independently, and neither does anyone else.

But we do know this: preemies born at 26 to 32 weeks (who are *not* micropreemies) have about a 10% rate of serious disability diagnosable in early childhood. However, by adolescence their so-called "mild" problems appear to preclude an independent life in 40% of them. (Walther et al, cited previously)

O'Brien et al. (cited above) show a similar trend toward greatly worsening outcome with time in VLBW children.

If we extrapolate from these studies by multiplying handicap detactable in infancy by 3 or 4 we get well over a 100% rate of problems precluding independent life.

Terrie Inder and others have described a brain damage pattern that seems to be universal, or nearly so, among infants below 26 weeks g.a. The problems involve decreased brain tissue volume and regional abnormalities that, it is thought are the invetiable consequence of extremely preterm birth and exposure of a highly vulnerable brain to an inappropriate environment. Changes in therapies will not help this problem.

We'll have to wait and see what the observed brain damage means for later life. The EPICure study should provide needed guidance here.

Meanwhile, I think it is in everyone's interest to face the problems and uncertainties of prematurity realistically and without recourse to wishful thinking and denial.

And I fail to see how VON or NICHD "fail the public." I just wish the public had easier access to their data.

4:26 PM  
Anonymous Anonymous said...

Of course, Bill Silverman!

Jerold Lucey published all of his op ed.s on this topic over the years in Pediatrics. Another example of Jerold's brazen bias editorship; pandering to a former mentor.

4:34 PM  
Anonymous Anonymous said...

I chose to agree to resusitation of my daughter and for aggressive treatment. I know I was not mindless or dismissive in my choice. She does have CP, when in the perinatal period her brain damage occured I do not know. If I had not agreed to that treatment she would be dead now. I would hate to think she will turn around to me as an adult and tell me she wished I let her die. Infants and children don't have the cognitive ability to agree to treatment, that is why as parents we have to advocate. As my daughter becomes older and ability to understand what a procedure involves I will be including her wishes in any decision making process. I find it very difficult to agree to the undervaluing of those who live life with impairment. Sure her life is hard at times and I wish I could take it all away but her life is full of much joy and happiness also.

5:24 PM  
Anonymous Anonymous said...

Please, don't veer away from the parents who are posting (and shying away from the current discussion)---they are living with the outcomes, and the "anecdotes" they provide are as meaningful as the hotly debated statistics.

I was glad to read that one practitioner put himself into the shoes of a parent, saying whether or not he would want to resuscitate a child of his own that was threatening to be born a micro-preemie.

Please pay just as much attention to the anecdotes as the research. The people who are writing about their real everyday life with ex-preemies make this discussion genuine and down-to-earth, not merely an intellectual exercise among researchers and research experts.

And for anonymous who inserted a political note in re: personalities or supposed favoritism of doctors/journal editors/mentors, STOP! Medical politics tarnishes this debate! Stick with the issues! Thanks!
CAK

6:19 PM  
Anonymous Anonymous said...

I have a 25 weeker who recently turned 2 years old, actual age. She was born at Cedars-Sinai, which may have affected her outcome (it is one of the world's best Nicus):

With speech, PT and OT, she is now AHEAD of actual age by 6 months plus in all areas. Therapy is done. I have been told by our developemental pediatrician (who is internationally renowned) to expect that she will be taking college classes in high school due to being at least a year ahead in receptive language, etc.

At the time my preemie was born, I read your work intensively, Helen. It caused me major depression and affected my ability to bond with my child, at first.

I clung to the fact that your son was an accomplished guitarist because in all of your writing, that statement alone gave me hope.
I thought that maybe my daughter would love something too, and have happiness no matter what was "wrong" with her. I wasn't looking for perfection, just peace.

Not all preemies turn out the same. I understand that mine is an exception so far, but kids like her should be noted too. THEY EXIST. It bothers me to see her experience delegitimized.

I genuinely appreciate all of your research, which helped me navigate my fears and begin preparing for the worst case scenario after she was born (and I learned I was a planner, even in crisis). However, everything that I read didn't happen. She's also almost in size 3 clothes!

Please recognize that preemie parents are in crisis and scouring the internet for hope. Even if you are presenting what you view as statistical truth (I have no idea), add love into it, acceptance, how and when you and others found happiness. It will make all the difference to them. I hope that makes sense to you.

7:36 PM  
Blogger abby said...

I'd like to add yet another personal anecdote to all this that calls into question Helen Harrison's fairly blanket assertion that it's the neonatolgists who are pushing parents into resuscitating their micropreemies because they'd like to subject them to the vast neonatological experiment.

When my partner was admitted to Labor and Delivery, we were visited by the neonatological team. The doctor on call was extremely frank about the possibility of a negative outcome--both in the NICU and beyond, should the girls survive. He counselled us to think very carefully about what we wanted to do. Once the girls were born, he asked us once more. It was we parents who decided to go ahead with things.

Once down in the NICU, we asked the doctors to continue to be very frank with us about what was happening and their assessment of the girls' condition. They promised not to sugar-coat things, and they did not. They explained everything--from open PDAs, to IVHs, to the infections that the girls presented with, to problems stabilizing things like electrolytes and blood pressure--very clearly and thoroughly and took time to make sure that our questions were answered and that we understood both the treatments and their implications. When our honeymoon period was over, we asked them to continue to be frank, and they were. When our one daughter experienced sustained hypoxic periods due to the shunting of blood through a large open PDA and they could not stabilize her, they were the ones who came to us and had the difficult conversation about outcomes. We were presented with the fact that there was little to no hope and listened carefully to them when we decided not to pursue aggressive care that would prolong her suffering. In contrast, our other daughter did fairly well leading up to and coming out of PDA surgery. When she needed a very short (3 day, very low dose) rescue course of dexamethasone, we were presented again with the relevant data and the studies on steroid use. In this case, the same neonatologist who advised us not to intubate the girls in the first place, again left it up to us to make a decision, but cautioned us that there were substantial differences between the use of steroids in the aforementioned studies and the use in this case (late in the game, limited in dose, short in term...). Fortunately, we were never presented with another version of the hard conversation, but I believe that the neonatological team (the whole team, which is about 8-10 doctors) would have been frank with us had our surviving daughter experienced a devestating setback during our stay.

So, to sum up, I don't think it's fair to say that the neonatological profession wants something that is in neither the best interest of the child nor of his or her parents. Our experience suggests otherwise, and I am very grateful to them for presenting a realistic picture but also trying their best to get us all -- us parents and our daughter --the best possible outcome.

7:39 PM  
Anonymous Helen Harrison said...

To anonymous:

My son is not an accomplished guitarist. He plays a keyboard with two fingers.

My son was also said by reknowned developmentalists to be "intellectually advanced" at the age of three. At age 31 he has an IQ of 59.

The words "cerebral palsy" were also never mentioned to us.

His neurosurgeon assured us he was a very bright child who would certainly be a fully functioning member of society.

I'm not saying any of this is going to happen to your child, but I would hope you would be able to "bond" with her no matter what her outcome.

To Abby: Not all neonatologists fail to inform parents or deny them choices. Many take a very family-centered view, and I applaud them.

What I object to is denying parents a choice in the resuscitation of a 24 weeker (or a 25 weeker, for that matter). I don't see this as evidence-based ethics.

Finally, I want to emphasize to parents of new preemies(some of whom are upset by the information, others of whom are posting me off the blog to get copies of the studies) that I am *not* telling anyone that they made the "wrong" decision or that their child, somehow, isn't "worth it." What counts is your happiness and your child's happiness. If you are pleased with your decisions (or non-decisions) then I am very happy for you.

All I ask is that other parents, if they wish, be *allowed* to make different decisions.

And if you find my posts distressing, I want to emphazise that no one is forcing you to read them.

8:08 PM  
Blogger Jen_miracles said...

First, I'd really like to ask........what, exactly, constitutes a micropreemie? Is it gestational age, or birthweight, or both? I've always been under the impression that my son was one. He was born at 27 weeks, 5 days and a weight of only 1 lb. 9 oz. due to IUGR.

I ask this to obtain the information, and also because there seems to be some sort of implied "oneupsmanship" in the debate about what is or is not a micropreemie these days. Obviously, the threshold of gestational age and weight that can be saved/resuscitated continues to reach younger and smaller babies, but it seems in some of these responses to be all about the name.....as if the designation as a micropreemie automatically guarantees a certain outcome. And we all know that it doesn't.

Also, doesn't it stand to reason that the treatment and care that a 31-year-old received in the 70s would differ greatly from the care our kids receive today? So why should we be lectured on what NOT to expect or hope for in our kids just because someone else's adult child has not had the ideal outcome.

I'll come down on the side of "we don't know yet" about today's latest baby boom of smaller and smaller preemies and what their later lives will be like. I do believe that if I set my expectations low for my sons, they will rise to just the level I expect. If I set the expectations higher..........hmmm, think that's what I'll do, and see how far they get. And I'll enjoy every moment along the way, no matter the outcome. Thanks for listening.

PS--Thanks CAK (anonymous 6:19 pm) for speaking out for us, the preemie parents. It's appreciated more than you know.

8:46 PM  
Anonymous Helen Harrison said...

The term "micropreemie" is almost always used to refer to infants born at less then 26 weeks gestation.

A child born at 27 weeks, at your son's birthweight, would be called an extremely low birthweight baby (ELBW) because his birthweight was below 1000 grams.

Yes, care has changed since the 1970s. Suvival has improved. Outcomes have not.

The studies I have referred to involve micropreemies born in 2000 to 2003. I think they are relevant to our discussion.

This is really not about my son, but there have been insinuations that I harbor some sort of personal bitterness, so let me explain.

My son was not a micropreemie. He was born at 29 weeks weighing 1320 grams. He was gravely ill with listeriosis, a form of food poisoning. His doctors told us that he was almost certainly going to die. When a brain hemorrhage was diagnosed, the doctor in charge of his care suggested to us that the kindest thing was to take him off the ventilator and let nature take its course. We agreed. However, aggressive treatment was never really discontinued -- although the docs did change his settings to CPAP for a while. (The fact that Edward survived was a combination of lack of continuity of care and misunderstanding. I blame no one for this, although many of the NICU nurses at the time told us we should sue.)

We love our son dearly and he has been the center of our lives for 31 years. We have been "up to" the task of parenting our son, and we do everything within our power to make his life as good as it can be under the circumstances. We have chosen not to put him in an institution (contrary to the advice of several neonatal caregivers who have done this with their own handicapped children. Instead we have chosen to keep him with us as long as we can.

Nevertheless, we are not super-human, and I do not know what will happen to Edward when we are no longer able to care for him.

My husband and I serve on boards of excellent facilities for the disabled in our area, but this is still not a life we would want for our son.

Our son's life in general is not one that I would wish on another child or another family. Sadly, many of the famlies whose children have the so-called "mild" problems of prematurity are struggling with even harder challenges. I think the neonatal profession needs to recognize this.

9:32 PM  
Blogger Ex Utero said...

Listeria is an awful pathogen, regardless of whether you're term of premature. Neurologic outcomes are uniformly poor and here is why: the organism has the unique capacity to evade the immune system by hiding inside of neurons. It crawls up the axon of one and invades the next until it consumes the central nervous system from the inside out. I fear this organism in the newborn more than any other (even HIV and herpes), because of the almost certain devastation that comes with it once it hits the blood stream. Thankfully, listeria is rare.

I'm truly sorry about Edward, but I doubt that his prematurity had much to do with his final outcome, even 31 years ago.

10:16 PM  
Anonymous Anonymous said...

I want to chip in from the POV of a general pediatrician. I take care of almost all the preemies that come out of a fairly large regional NICU. MOST of them, including the 24 and 25 weekers, do very well. None are adults yet, but several are in their teens. I can off the top of my head think of a 24 weeker who is absolutely developmentally, academically, and socially normal, another 24 weeker who has mild social delays, mild speech delay, and is a complete delight and joy to his family, a 25 weeker who is a preteen and absolutely well, a 27 weeker who is 6 and nearly ready for Harvard, and a 28 weeker who has bad spastic CP but a wicked sense of humor, tons of hobbies, and is the light of his family's life.
So all is not dark and dismal.
Granted, all these kids have been through a lot, and their parents have been through nearly as much. I know they received counseling about outcomes and were (for the 24 and 25 weekers) given the option to resuscitate or not - as I am the one who talked with them, or was there with the neonatologist when the discussion happened. And I can categorically say that not one of their parents wishes they had made a different decision. For what it's worth~

10:44 PM  
Anonymous Helen Harrison said...

To ex utero:

Thank you for the kind words and the information on listeria.

Interestingly, one of our son's neonatologists lost a year of medical school (and very nearly his life) when he contracted listeria from a patient.

I realize that this is a horrible organism at any age -- I was pretty ill with it myself.

As I mentioned, I really don't think this discussion is about my son, and I have never offered him as an example of outcomes of prematurity. He is not relevant to the ethical discussion because he is not a micropreemie.

But I must also point out that his outcome is not that unusual among preemies and is actually better in some ways than the outcomes of children of other families on our preemie lists.

Living with him has given me an appreciation of the problems other families face.

I also grew up with a much younger brother who has what would probably be diagnosed today as Asperger's syndrome.

In many ways my brother's outcome is worse and more complicated than my son's. Because my brother is aware that he is abnormal, he suffers from that knowledge. He also doesn't appear impaired (at least at first glance) and so people don't respond sympathetically to his bizarre behavior. He, too, has been unable to live independently.

Many parents with preemie multiples, one severely handicapped, the other with "mild" problems, tell me the "mild" problems are much harder to handle. My mother and I certainly had that conversation on numerous occasions.

Preemie and Asperger's victim, Nikki Bacharach, daughter of Angie Dickenson and Burt Bacharach, felt so "ravaged" by her brain disease that she recently committed suicide. She is one of many, sadly.

Our son, by contrast, is too retarded to realize that he is different. And, in some ways, that is a blessing.

11:22 PM  
Blogger terri w/2 said...

Having read the comments regarding outcomes, I have to say that Helen's advocacy has been a psychological life-saver for many families whose lives have been adversely affected by prematurity and subsequent life-long issues. . I wonder why it is such a challenge to realize that many of these babies are coming out of the NICU in really bad shape? Our family physician who has been an incredible advocate for my children has had several severely, profoundly disabled preemie survivors in his practice. We've had ethics discussions about this, because probably, I no longer pretend to be a martyr and that I can handle this all (which many parents, particularly mothers seem to do - put on a brave face), or has Helen says "making lemonade." It isn't a joyful happy life to see your child suffering with seizures, surgeries, struggling with mental health issues . . To discount the facts that are arising from the now numerous studies, the school systems that are so incredibly stressed by the severity of the survivors, the social service systems that cannot even begin to meet our needs, and on and on. .when will it end? It is not just the infant's interest we should be taking into account - this saving micropreemies effectively blows many families apart. .

11:35 PM  
Anonymous Anonymous said...

Here is a JAMA study for parents-

Preemies Defy Odds And Overcome Difficulties By Adulthood: Study

Science Daily — Look around, can you tell who among your friends were tiny, preemie babies?

As young adults, the majority of extremely low birth-weight infants are attaining similar levels of education, employment and independence as normal birth-weight infants, according to a study by researchers at the Michael G. DeGroote School of Medicine at McMaster University in the February 8 issue of the Journal of the American Medical Association (JAMA).

This is good news for the infants and their parents, as more than a quarter of low birth weight children have development difficulties such as cerebral palsy, blindness and delayed development, compared to two per cent of normal birth-weight infants.

Dr. Saroj Saigal, professor of pediatrics, conducted a study over two years to determine the outcomes at young adulthood of extremely low birth-weight infants, in comparison to a group of normal birth-weight children.

The measures of successful transition to adulthood included educational attainment, student and/or working roles, independent living, getting married, and parenthood.

The study included 166 extremely low birth-weight people who weighed 1.1 to 2.2 lbs. at birth and were born between 1977 and 1982 as well as 145 socio-demographically comparable normal birth-weight participants.

The low birth-weight infants have been followed from birth, the normal birth-weight children were recruited at age eight years. Both the low birth-weight and normal birth-weight children were assessed at ages eight, as teens and at young adulthood of 22 to 25 years old.

The proportion of participants who graduated from high school was similar (82 percent of low birth weight infants compared to 87 percent of those with normal birth weight). Overall, no statistically significant differences were observed in the education achieved to date. A substantial proportion of both groups were still pursuing postsecondary education (32 percent versus 33 percent).

No significant differences were observed in employment or school status, as 48 percent of low birth-weight and 57 percent of normal birth-weight young adults were permanently employed.

No significant differences were found in the proportion living independently, married/cohabiting, or who were parents.

The age of attainment of the above markers was similar for both groups. These findings hold even though participants included the 27 per cent of low birth-weight and two per cent of normal birth-weight people with disabilities.

"Against our expectations and many odds, a significant majority of young adults who were low birth weight infants have overcome earlier difficulties to become functional members of society," said Dr. Saigal, a neonatologist with the McMaster Children's Hospital in Hamilton.

"It isn't clear what factors contributed to the positive outcome beyond adolescence, as all through childhood the low birth weight cohort was significantly compromised in comparison with their peers. Our study should provide hope to parents for an equivalent, if not a better, future for their premature children in the longer term."

Saigal says more studies from research centres with established databases from the recent era are needed.
###

The study was supported by grants from the Canadian Institutes of Health Research and the U.S. National Institute of Child Health and Development.

Note: This story has been adapted from a news release issued by McMaster University.

1:06 AM  
Blogger Jacqui said...

I have little to ad to this debate, save for this:-

I have always been horrified when I have heard of parents being asked to sign DNR's for their severely disabled children. I thought that everyone felt like I did and that they would continue to have their child resusitated.

And then I participated in a discussion where I heard parents tell me of the guilt that they felt in having their child resusitated. That if they had to experience it again, the outcome may be different. I know these parents and they are loving, attentive and dedicated. i don't wish this decision on anybody, but ultimately it is the parents decision to make.

2:33 AM  
Anonymous Claire said...

I am not surprised by the commenter who said that Helen Harrison's aggressive advocacy caused her to become depressed - right now, it isn't doing a lot for me, either. Living in England, I was not aware of her or her organisation, and I am thankful I was not. When my daughter was diagnosed with CP, age 10 months, I headed straight for the bookshop. I don't think I would have survived being presented with such a bleak picture. (My daughter would've still been there - with a very depressed mother) 70% neurological deficit is a statement of fact. How that translates to daily life is subjective experience. It is clear that some parents find her lack of sugar coating helpful and realistic. I think it is aggressive and patronising. Her message seems to be "If you are so stupid as to choose to keep your child alive, don't kid yourself that you will do anything other than inflict suffering and pain on yourself and your family. You seem to have escaped the worst of it at 5? He/she will still suffer as an adult...but of course, it's your choice" Faced with that kind of "realism", choice becomes a joke. She clearly thinks parents like me are deluded. Her relentlessly negative view of the statistics may well be a comfort to those who have lost babies, but I am afraid I find her quite terrifying. I am continuing to post because I cannot bear the idea that it should be her stong views ALONE that inform this debate. She talks of doctors "mindlessly" choosing life. I worry about those who are rather to practically inclined to choose death. She is forthright and uncompromising in her view - and entitled to it. Those of us protesting that our lives, and those of our children, are NOT unbearable or hopeless can sound feeble by comparison. Silly, sentimental, deluded mothers, blinded by love. Neonatologists, faced with terrible decisions, presumably are also split between the glass half full/half empty view. Where are the neurologists in this? The brain is complex, the brain/mind link even more complex. Two infants subjected to the same procedures will not have identical outcomes. Two children with damaged brains will not be identical. CP is not an entity, it is a wide specturm of disabilities. The quadraplegic with an IQ of 140 will not have the same life as someone with mild hemiplegia and an IQ of 80. What is good for society and what is good for the individual are in conflict too. There is no easy resolution here. If there is to be a debate, then more than one voice has to be heard, and then the decisions stay as difficult as ever.

5:58 AM  
Anonymous Anonymous said...

To Clare: I am glad you rejoined. You are quite articulate, representing your point of view.
No, I do not have the feeling that your viewpoint is a sentimental one. I applaud everyone who takes their own path.

BUT the researchers and neonatal docs must make that an informed choice, insofar as is possible.

Helen stands for informed choice. She brings us some bad-news outocmes---but she brings us that info so that we can make informed choices. Helen lives with a person with disabilties every day for 31 years! She is credible as a parent and as a researcher/advocate.

Don't shoot the messenger. Even if the message is distressing.

CAK (Chris and Vic)

6:57 AM  
Anonymous Anonymous said...

Every one of those statistics is someones child, everyone of those statistics is someone's life, you can argue until you are blue in the face that those statistics are right or wrong.....but at the end of the day surely it comes down to interpretation of what is said by the families who live with these children everyday. You have to add into this someone's personnal bias, who decides what is a severe disability or not? When surely something like Autsim can be far more debilitating than mild CP.

Those statistics are many of our lives, the things we live with, and they should not be ignored or seen as unimportant. CAK your right the most important thing in this whole thing is parent's experiences, they way we cope and deal with day to day living, with any child with a disability.

I have been told time and time again that I should think myself lucky that my son does not have CP, why are my son's multiple disabilities any less life altering than that of someone with CP?

As for the study for parents about how preemie's recover by the time they reach adulthood - to me that seems to be setting lots of parents who's children have issues up to fail. Just as the "caught up by two" my son won't recover on the morning of his 21st brithday any more than he did on his second.

Yes premature babies have very different outcomes, yes some of the smallest and the sickest of babies go on to reach full potential, just as they probably would have done had they been born at term - but many of them don't.
They are left with long term issuses that can be devastating. As parents don't we/shouldn't we have a right to know what faces our children?

Surely this is where the research comes in, parents talking to professional people wanting them to show what the long term impacts can be. I have taken part in some of this, purely because I want people to be aware of what for us is very much a reality. Surely sharing that has to be easier than the way many of us have faced this situation with "wait and see." Spending years balanced at the edge waiting for the fall.

Parents are as individual as their babies, some can handle knowing what the future may hold, others can't. In my opinion this information needs to be given at an earlier stage, than when your sat in the NICU by the side of a dying child, when your emotions are all over the place, and all you want is for your child to survive.

There is no right or wrong when it comes to saving these little ones, but parents need the support of the services around them to help them deal and cope with when things don't work out, then maybe less parents will feel the need to walk away abandoning their families or commit suicide taking their children with them.

8:18 AM  
Blogger terri w/2 said...

In my first blog under the "ignored" section, I've talked about what life has been like since preemiehood. So I will not go into detail here, however, I am not an isolated case here in my area. My best friend I met through networking also had a preemie 26 weeker, grade IV IVH. .she survived with severe cerebral palsy/wheelchair, completely blind, profoundly mentally retarded, g-tube, seizures. .her daughter died at age 12 from a shunt infection. Her first words to me following her child's death were "it took 12 years to undo what neonatal did to her". .

In my daughter's small school (700 K-12 students) there were 5 children with cerebral palsy -4 of them were former preemies, two of those were former preemies who were severely involved both physically and mentally.

It seems that we are only hearing the rosey outcomes (the media miracle baby stories) and studies such as Saigal's mentioned above are designed (manipulated) to show a certain outcome while downplaying the truth of what's really happening out here.

I've said for years, if neonatologists or anyone for that matter interested in neonatal care were to spend a week living with a family who has a severely impaired survivor, their approach to care would be vastly different.

Remember the old Wild World of Sports ad for "the agony of defeat" - this is the slippery slope we've been thrown down. .

8:38 AM  
Blogger Sarabeth said...

I've said for years, if neonatologists or anyone for that matter interested in neonatal care were to spend a week living with a family who has a severely impaired survivor, their approach to care would be vastly different.

Some of them do.

9:47 AM  
Blogger Heidi said...

I'm a preemie mom wanting to throw out another experience. We had an exceptionally rough pregnancy and were expected to miscarry. At 16 weeks gestation our medical team warned us of some of the risks we faced with an early delivery and asked us to think about resuscitating or not - if we even made it to 23 weeks. We had six long weeks of consultations with my high risk doctors & the NICU team, hearing the bleak statistics. We initially chose to provide only comfort care, but changed our minds as the pregnancy progressed. I delivered at 23 weeks. We've been reflecting a lot on that experience as our son turns 2 years old this month.

We did not make the decision to resuscitate lightly, though I know we were in a great deal of shock. Our circumstances are unusual in that we had several weeks to research and discuss outcomes, and a great team that was supportive of our choices. We certainly hoped to be part of that tiny percentage that walks away with a healthy preemie, but I believe we had a fairly realistic set of expectations. Coming out of anesthesia after my c-section, I knew there was a good chance my son had not survived delivery - and if he did, we couldn't predict what issues he would still face.

He's still very young. We know we have many more hurdles to jump, but we have been told repeatedly by doctors, nurses & therapists that his progress is nothing short of miraculous. When I pull my dancing son off of the dining room table for the 54th time, when I see him gently rubbing his new sister's head and saying, "Baby!" or when I discover he's learned to rename all the files on my computer's desktop, I am grateful. Because I know he's a miracle, no matter what the future holds. Perhaps all parents want to believe that of their children?

Thank you for a fascinating discussion.
Heidi

10:23 AM  
Anonymous Anonymous said...

I would like to have a head-count of all those researcher or clinicians who have spent time with an ex-preemie family doing everyday activities. Was it part of your training as a ped/neo/OB?
Was it a requirment for your obtaining your present post?
How long did you spend? What did you see? What did you do? How did you participate?

What are your reflections about the follow-up care, medical and psychological, of these ex-preemies? Their educational experiences? Their being mainstreamed at school and/or in the community?

If you did this total-immersion in preemie-dom, what frustrations and what solutions do you have? What emotional response do you have? For the kids? For the families?
Thanks
CAK (Chris and Vic)

10:51 AM  
Blogger Ex Utero said...

3 out of 8 our our faculty in my institution do NICU follow up clinic and it is manadatory for all of our fellows (such follow up is mandatory for all NICU fellows as part of their training - so all neonatologist have some outcomes exposure). I do not do this clinic but I know a family well that has ELBW twins that are now 5 years old. We baby sit them, have dinner together and know them almost as well as our own. Our children were in day care together. One is quite affected (functionally blind and has mild pervasive developmental issues); one is normal in as far as I can tell. Both are loved and cherished and have wonderful personalities. The one who is affected knows the name of every song, singer, voice actor, and of course character in a recent pixar movie that the child is fixated with. I don't know any other five year old who has that kind of recall, so it certainly is not an issue of intelligence. I have no doubt he will one day fit into the category of "needs assistance with living" and yet I do not consider his life a tragedy for him or his family. Nor do his parents.

I do know other examples of NICU graduates who I think have a tragic existence. In many cases, these are children where events postnatally (head bleeds, infections, NEC) led to ever worsening outcomes. Sometimes, I might even say most of the time, there was an opportunity to discontinue care and let them pass away but the parents refused.

One of the things we have not talked about in this long string (and maybe ND should think about this for a future post) is how parents perceive the differences between the choice not to resuscitate in the beginning versus the decision to withdraw care once a child's future is more certain because of unfortunate complications. As a physician and a sometimes ethicist, I find it more ethical to withdraw care when we know that hope for a good outcome is fading than when we don't know what the future holds.

11:35 AM  
Blogger neonataldoc said...

Well. I think it's fair to say that there is a lot of discussion that can occur about outcomes of premies (sorry for the cute term, Sarabeth.) I appreciate all the comments, regardless of their viewpoints, but please realize that I don't have time to respond to every point made. Like most people, I agree with giving honest information to parents, although there seems to be some debate about what that honest information actually shows. Overall, my feelings on this are pretty close to ex utero's. It's tough, when 25 weekers have a 70% chance of survival, to not resuscitate them. In my practice, nearly all parents do ask for resuscitation for their kids, and it's not because we're giving them incorrect information.

One question: CAK, where's the data about ex-premies bringing medical and educational systems to their knees? I remember similar things being said about "crack babies" (a term so pejorative that I don't allow residents to use it), but that didn't come true. There are about 4 million births per year in the U.S. Very low birth weight infants make up less than 100,000 of those, and not all VLBW babies will need extensive medical and educational help.

Folks, I've got to move on, and I hope you can too. This being a neonatal blog, I'm sure that other opportunities to discuss aspects of premie outcomes will come up. Like Lori said, peace to you all.

11:55 AM  
Blogger terri w/2 said...

Re: The data that says preemies are bringing the medical and educational systems to it's knees. .

The following article is from the Massachusetts school system that specifically addresses special education costs and the dramatic rise in numbers of children who severely disabled as a result of medical advancements - prematurity is discussed specifically:

http://www.aasa.org/publications/saarticledetail.cfm?ItemNumber=2548&snItemNumber=950&tnItemNumber=951

I have an article from a school nursing organization that discusses the rise in number and severity of children with special needs - prematurity is also mentioned there. I can post that if you'd like.

Also the Centers for Disease Control discusses the prematurity problem in a dynamite article - the full article can be accessed at http://www.hhs.gov/asl/testify/t040512b.html - I will quote the part that is most interesting regarding prematurity:

"We have very few health threats of this magnitude, and this health threat goes well beyond the burden of infant mortality. Preterm delivery is the leading cause of developmental disability in children, including cerebral palsy and mental retardation, and is an important cause of blindness and chronic lung problems. Infants who are born premature are more than two times more likely to have a birth defect than infants who are born at term. Premature infant births extract a huge financial toll on our healthcare resrouces. Hospital care of preterm infants costs over $13 billion each year. This is just for hospital care at their birth. Additional costs include hospitalization of mothers and continued care of children, including costs for repeat hospitalizations, medical visits, rehabilitation, and special services for children with special needs. But the toll of preterm delivery is not just financial. It tears at the fabric of our families and our communities, and takes an enormous emotional toll on mothers and fathers. Taken together, it is clear that preterm delivery is a public health priority."

Testimony by Eve Lackritz, M.D. 5/12/04

8:43 PM  
Anonymous Ann said...

Claire,
Thanks for your thoughtful post. Being the parent of a 28 weeker myself I was really starting to find Ms. Harrison's comments distressing. Distressing to the point where I spent the last 2 days watching my son like a hawk. My husband picked up on it and asked me what was wrong. When I told him, he said yes we must be prepared to do whatever we can when/if challenges present themselves. But we have a wonderful OT/PT who sees him weekly and gives us nothing but glowing praise for his progress. So my husband cautioned me not to spend so much time worrying that I pass those feelings onto my son or heaven forbid don't enjoy all he is accomplishing. At 13 mos adjusted he is speaking a few words, crawling, cruising, climbing, and developing a sense of humor. I am going to go enjoy that now.

Ann

3:42 PM  
Blogger art-sweet said...

I find it distressing to see so many people speaking for disabled adults.

Helen cites the anecdote of Nikki Bacharach as if it speaks for all. While some adults with severe disabilities would rather not be alive, others are embracing life and trying to get all they can out of it. There are people whose quality of life appears to the able-bodied to be insufferable - and yet they prefer to be alive.

I have, in the greater scheme of things, a relatively minor "disability" - type I diabetes. I can't count the number of people who have said to me, "oh, I'd rather die than have to give myself shots." Please don't make those decisions - in either direction - for me.

One of my closest friends is a twin who was ELBW and very premature (28 weeks, I believe, but am not sure) in the mid-70s. She - and her sister - are both fantastic "normal" highly functioning adults today.

9:25 AM  
Anonymous Chris and Vic said...

I just finished a new book by Jane Hamilton, When Madeline Was Young, about the life of a person with cognitive disability brought on by traumatic brain injury (TBI). Jane's is a work of fiction--however . . . it is most insightful, I believe and it it shows possibilities, embraced by the family of Madeline, that open you up to thinking more creatively.
I won't say any more---do read the book, if you want to imagine how the life of a person with disability severe enough to be unable to live independently MIGHT unfold---and the influence such a person might exert on the rest of the family.
Chris and Vic (CAK)

11:13 AM  
Anonymous RDoc said...

Why the weight is important indicator of the infant health?
Low birth weight is associated with numerous problems of the baby's development. So who determines the right weight?

1:56 PM  
Anonymous Dad2Luke said...

Hi Folks,
I have been reading a bunch of folks who say that their neonataologists let the parents decide everything. I suppose it happens.
But my experience was that when we questioned their wanting to CAT scan my son's head for no reason that they could explain to us, they did back down, but threatened to "remove us from the case" should we continue to question their wishes.
He was a 32.5 wkr, and now is PDD/NOS at 7 years.

7:12 PM  
Blogger twinsx2 said...

I don’t even know where to begin. I am the mother of two disabled premature children, surviving triplets born at 25 weeks gestation. I have 3 other children as well. After they were born, weighing less than 1 ½ pounds a piece, I heard the talk of “miracle” babies but once the “miracle” was incomplete, i.e. the disabilities appeared, my children were no longer miraculous but a hindrance, a parasite on society. One of my survivors has mild autism. He is in general education classroom doing grade level work. The other is multiply impaired.
My life is filled with surgeries, doctors’ appointments, and therapists’ appointments. My children made my former friends uncomfortable. It is an “in your face” reminder that there, but for the grace of God, go I. I have also been told that I need to “get things right with God” so he will “cure” my children.
I have been advised to “get over it,” “accept it” and “get on with life.” How can I “get over” my child’s multiple impairments? I live my life knowing that my children will face pain, both emotional and physical, teasing and unacceptance. I spend my days fighting for insurance coverage for therapy, surgery and medical equipment. I’ve been meeting with school officials regarding special education services since my children were barely home from the hospital. Who will advocate for my children when I am gone?
Special needs children are more expensive than “normal,” we call them NT for neurotypical, children. More money means more therapy, better equipment, and modifications for the home. Diapers cost more the older the child is. A special needs stroller can cost $2,000 with a 50% co-pay. We can reach our lifetime caps on medical insurance sometimes before the child comes home from the hospital, leaving the child uninsured. There is no Medicaid, in most cases, unless the family lives in poverty. Both parents feel the strain on their marriage. The divorce rate for parents with special needs children is near 85%! The fear that the marriage might crumble is a very real fear.
Our neighbors in the “community” don’t want group homes in their neighborhoods. Zoning restrictions define “family” and limit the number of unrelated persons who can live in the same dwelling. Not in my backyard! Recently, in the city where my husband grew up, neighbors protested against independent living homes for physically disabled adults because “they weren’t the cliental the city was trying to attract.”
We have been told all of our lives that life has value. That our children have value. But, society does not value our children. We are not welcome in homes, in churches, in schools, or in your neighborhoods. We are hissed at in stores to “make our children behave.” We are muttered at in restaurants if we try to act like a normal family and have a night out. People won’t sit by us at fast food restaurants and they pull their children away from ours at the park.
These are some issues that were never mentioned when talk of “saving” our babies was broached. I made the erroneous assumption that society and the medical profession actually cared about my children. Now, there are few doctors to help me manage their care. Society has told me that they are my children, deal with it. Society and the medical profession cared about keeping them alive, they did not care about their lives.

9:09 PM  
Blogger terri w/2 said...

Twins x2 - Thank you for your post. I have adult micropreemie twins, one severely disabled, one moderately, you echo my sentiments exactly!

teresaroseb@yahoo.com

9:33 PM  
Blogger abby said...

So, then..;the big question is: do we advocate for changing society so that it is more accessible and accepting of the disabled and differently abled; so that health insurance is available to all; so that people are taught not to discriminate based on how one looks OR do we say: gee, equality is too expensive, and fighting for the extension of justice is just too darned inconvenient, so let's eradicate difference? Choosing the latter position brings us awfully close to eugenics. Personally, I'm not comfortable with this. Furthermore, it bears noting that various 'inconvenient' social groups were denied equal rights and equal access to services until they and their allies advocated on their behalf. Alas, our country extended rights to but one social group: while, male property owners. Everyone else was disenfranchised and at best a second class citizen. I have no idea how my daughter will turn out, though I don't believe for a minute that she could go through what she went through and emerge entirely unscathed. But I do know this: I will fight tirelessly for her -- and not just with my particular insurance agency, my particular school system, etc. Rather, the whole system needs to be taken on. All of our preemies deserve this. What I can't imagine doing is hiding her away because she's different.

10:29 PM  
Anonymous Helen Harrison said...

To Abby:

Let's start by giving parents realistic information and the power (which, by law, they already have) to decline experimental, and, arguably, abusive treatment.

We have a medical-industrial complex with vested economic interests in no-holds-barred neonatal care. There are doctors out there who will, to quote a common NICU saying "Resusciate the rocks in the parking lot."

We parents have to live with the consequences, which often means watching a child you dearly love die by inches, over years.

I certainly hope you and your partner and your child are spared this experience, but I know all too many others, in similar circumstances who are going through utter hell.

Who are you to tell them they have no choices?

10:52 PM  
Blogger j.net said...

Science Daily — Look around, can you tell who among your friends were tiny, preemie babies?

For the most part, yes, I can. Now that I have spent 18 years as mother to twin 28 weekers, friend to other preemies and families with preemies and longtime member of a preemie list, I can pick most of them out, even the ones who are married with children and successful in their professions. They have physical and psychological issues that are common among survivors of premature birth.

I am "just a mom" with a journalism background, and I find the results of the McMaster University study cited by JAMA to be absolutely unbelievable. How were the preemies chosen for that study?

For the record, I am pro-life. That said, I am also pro-quality of life, quality of medical care, quality of education and quality of inclusion.

We weren't given a choice about whether to resusitate our son who was born "flat, and it took a really, really long time to get him back" (quote I overheard an NICU resident tell a nurse, neither of whom knew I was the mother). In fact, we really weren't given many choices about his care at all. It was as if he was their child, and they only needed us for permission for the next surgical procedure which really wasn't explained very well except to say it might save his life. But while his life was being saved, nobody checked his vision until he was almost ready to go home, and it was too late. Both retinas had already completely detached. Earlier intervention might not have worked, but he sure would have a better life if he had just a little eyesight considering he has severe cerebral palsy, seizures, mental retardation, scoliosis, failure to thrive, a shunt for hydrocephalus, hiatal hernia, life-threatening GERD with ulcerative esophagitis, hearing loss, and the inability to speak.

Funny, brochures in the NICU said ROP wasn't much of an issue anymore so that was one thing we didn't worry about.

Our other son, the feeder/grower twin who also had a grade 4 IVH, is a miracle considering what could have been. He met most of those developmental milestones, some of them early, in fact; he met them earlier than our full-term son. They weren't concerned that he only passed the speech and language evaluation by just one point. We were told he'd catch up by age 2. But his speech still wasn't great, so he got speech at school. He got hearing screenings, all of which were normal for the frequencies that were tested. He got notes sent home that he wasn't paying attention, that he wouldn't answer questions in class or participate, that the teacher had to tell him over and over what to do and how to do it. It wasn't until the end of fourth grade that we took him for a full workup and discovered he had mild to moderate hearing loss in several frequencies. He had ADHD. He had severe nonverbal LD, significant dysgraphia, visual-motor and visual-perception weaknesses. But he was gifted verbally. So he is "average" in composite scores, but in reality, his abilities and performance are at opposite ends of the spectrum. Still, if this twin was a statistic in a study, he would likely meet the criteria for "normal, independent adult who on the outside can't be distinguished from a full-term peer."

The reality is much different, and it is my hope that some day premature babies and children will have their own clinics -- devoted to evaluating their progress or lack of it on an annual basis until they are grown. I know too many preemies who got dismissed as normal by age 2 or 3. When difficulties appeared later, it took an act of God to convince the experts that there really were problems, and lo and behold, it was related to their prematurity!

This is a great discussion, and it's about time!

2:14 AM  
Anonymous Anonymous said...

I really think that the decision of whether or not to resuscitate a micropreemie should be left up to that micropreemie's parents. Period.

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1:50 AM  
Anonymous Anonymous said...

I been trying to find info on micro preemies and every where there are comment sections is Helen with grim statistics. You claim that everyone else is biased in statistics but it obvious your bias too especially claiming just about 100% of micropreemies will not be able to live independently and even if the child seems fine that evntually they won't be. It seems to me you don't want micro preemies saved unless a prent really wants to and they are aware there kid will be permentaly scarred for life.

You seem to think neo doctors all want to push the envelope and save babies that are doomed but in survies most don't tend to resusitate the grey areas. There are probably more out there that tell the gloom and doom stories than ones who save 23 weekers no matter what parents want. They both exist.

There are a lot of things that can happen in life that leads to these decisions. I worked with developmentally disabled adults and they come from many different circumstances including illness, car accidents and birth accidents. There are lots of things that can happen that can lead to issues later in life. You can't help the hand you are dealt with and it is very hard.

Admist all the negative statistics and looking at them in a more negative light there are more positive statistics and a more positive way to look at them.

There must be very succesful NICUs out there that have good survival and post NICU stay statistics. I seen some where 50% of 23 weekers can survive. Amongst survivors there is probably ways to reduce the risk of serious problems. You of course can never eliminate them. Preemies will always score lower than 40 weekers in general.

Out of the preeemies with serious problems later in life that can't live independently as adults what was there stay like? Did they use steriod more generously? Did they have brain bleeds or incidents of going without oxygen?

Shouldn't we look at what the most succesful NICUS with the best follow up are doing? I know sensory issues are common. Maybe a dimmer and quieter environemnt, more kangerro care and pain relief for surgeries would help. The things ExtraUtero mentioned is great progress and will help outcomes.

I think parent preference is a very important piece of this puzzle as it should be in things like car accidents and illnesses etc.

I know that people look at the micro preemie mom blogs as being all sunshine and rainbows but I don't think so. There are lots of very really blogs out there that go over the trial and tribulations of micro preemie parenting. Parents should be able to vent and to get help and address issues that people pretend don't exist but they also should be able to tell the positive side too and the love of their children.

Obviously problems may show up in later life that were not apparent at 2 but certainly not all kids with out problems at 2 or 8 or whatever age will develop them. I think in most cases the problems were subtle enough to become issues later in life. It is hard to diagnose the milder end of the spectrum or things like ADHD that can cause issues later.

Even if the issues are not caught on tests at 2 or 8 in most cases there probably were signs and parents were aware they may have problems later in life. I know there are cases of degeneration but it isn't inevitable.

I know many micro preemies that don't have issues at all or they are very minor. It just ancedotal but ancedote is important too. My nephew is a ELBW baby that just qualifies as a micro preemie and he is now a teen with absolutely no issues at all from his prematurity.

They list vision imparement as a serious issue in many studies. Obviously preemies especially micro preemies are a great risk of having either mnior or major developmental issues. They need EI and follow up and parents should be made aware of the risks. I don't think that every micro preemie is doomed and should not be saved.

5:22 PM  
Anonymous Anonymous said...

I sure most moms want to know relative statistics but they want to know that there is hope and it isn't all gloom and doom.

I am glad there are Neos out there who want to research and push the envelope to determine where lines should be drawn and ways to improve outcomes. It isn't perfect. Nothing in life is. I like hearing the other side of the story but there is positive too.

5:22 PM  
Blogger JHC said...

Yes, all those statistics are fine but there are cases when it doesn't fall in. My twins were born at 24 weeks..1lb 1/2 each. Surgies and infections in hospital.. But they just turned 12.. My daughter is considered gifted ...scored over 99% (National testing) in all subjects and my son is smart also but above for his age group. Both healthy happy normal kids.

Wish someone tracked them over the years. Hoping there are now studies with do so they can determine maybe a pattern.

I had the choice to resistate my kids. Tough choice for anyone. But I have seen so many do well over the years.
My thoughts....Jeannette

2:05 AM  
Anonymous R said...

I am a mother of a 26 weeker (790 g) that was born last May. She had a relatively smooth 87 day NICU stay during which I was bombarded with anecdotes of every 26 weeker that "caught up" to its cohorts since the beginning of time. Even the doctors failed to inform us that there were very real possibilities for anything short of "catching up".

We left the NICU hoping to leave preemie life behind along with it. It was only a couple of months until it was clear that our baby was struggling with motor and speech developmental milestones. She also has feeding issues. She is responding well to speech, OT, and PT. Things are looking up for us. No matter what outcomes we face, we will be OK.

I applaud you for discussing the realities that micro preemies face. There are very few sources that do. While there are so many anecdotes about preemies that do catch up... there are very few tales of other outcomes. I think the "catching up" expectation sets parents up for more heartbreak (in addition to having a preemie). I grow tired of explaining to everyone why our baby has delays when the common myth is that preemies catch up by two. (Apparently, everyone has read the same WebMD article that automatically makes them an expert on preemies.)

I feel it is time that we start talking realistically rather than best case scenario. I think it's time that people understand the gravity of prematurity and that preemies are not just "tiny cute babies". It is not pessimism if it is a reality. Reality is sometimes unpleasant. I would rather be informed and empowered than blindsided again.

For all of those people that think they know what is best for other people's babies... let them spend some time in the NICU. Let them see the grim reality of what these babies face. They have no idea the tough decisions NICU parents face. I am reminded of a preemie mom discussing the passing of her child. She expressed relief. She explained that after watching her daughter's entire life filled with hospitalizations, tests, procedures, and suffering that her daughter was now at peace. She missed her daughter but her daughter's life haunted her more than her death.

10:30 PM  

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