Thursday, July 05, 2007

Yes

I've written many posts in the past about outcomes of babies born extremely preterm, and there have been some heated debates about these outcomes. Are they good enough? Are we giving parents adequate and honest information? Are we justified in resuscitating extremely preterm kids, or vice versa, in not doing so?

Two articles in the July issue of Pediatrics address the issue, and they are, I think, for the most part reassuring to those of us who routinely resuscitate extremely premature babies.

Both articles are from Sweden. One of them looks at how preterm infants born in 1973 to 1979 are doing at the age of 23 to 29 years. Not surprisingly, the more preterm you are the greater your chances of having a disability. However, the percentage of people born at 24 to 28 weeks with disabilities was only 13.2%, and only 18% of them live with their parents. Sure, there's still room for improvement, but it's good to see that the large majority of 24 to 28 weekers were reasonably functioning adults.

The second study examined mental health and social competencies of 10 to 12 year old children born at 23 to 25 weeks gestation. Again, to some degree it's a good news/bad news report. On the one hand, the extremely preterm born children were more likely to have problems with anxiety, depression, attention, thought, and social problems, and more that one-half were experiencing school problems. On the other hand, though, 85% of them were attending mainstream schools, and the majority were not having major adjustment difficulties.

I find these studies reassuring and am especially glad to have them in light of the Epicure study, a study done in the 1990's in Great Britain of 23 to 25 weekers that, frankly, demonstrated pretty crummy outcomes. There are many of us neonatologists who believe that the Epicure results are not truly representative of outcomes of most 23 to 25 weekers, and these Swedish studies provide data to support that belief.

This hardly, of course, ends the discussion about resuscitating these kids, but perhaps it will help some people understand why I feel a little funny if I don't resuscitate a 23 weeker.

49 Comments:

Blogger Jacqui said...

Thought I would get in early before the debate starts.

ND, there seems to be an automatic assumption that if we are getting these numbers from a study of children born so long ago, then the numbers should be so much better in todays terms? However is this indeed the case as I would assume that the babies who had the more serious risk of disability did not survive their prematurity back then, whereas today they probably would.

To me, the underlying messaage that this all comes back to is the value put on a human beings life. My son has been recently re-categorised in his label as being severe. I'm sure on paper he doesn't look like a NICU success story but the truth is that he is. That despite the limitation put on him resulting from his disability, he has a wonderful rewarding life. Maybe he won't ever live independantly from me and hubby. Maybe he will live with one of his brothers. Maybe he will live in a group home. But maybe, just maybe, he will get married and have kids of his own. Who knows? But none of these answers determine the value of his life. It is invaluable.

Jacqui

10:34 PM  
Anonymous Anonymous said...

ND:

In your experience, do twins suffering from chronic TTTS do worse than babies of similar gestational ages?

11:08 PM  
Anonymous Long Term Listener said...

Hi ND
Why do you feel that the EPICure study is not representative?

3:24 AM  
Anonymous Anonymous said...

I agree with Jacqui. Perhaps the preterm babies that survived over 20 years ago were the strong ones, with least likelihood of disability.
These days, so many more tiny sick babies are saved, so disability outcomes may be different???

It is, though, good news. :)

5:56 AM  
Anonymous Anonymous said...

Glad your back ND...this post reflects the ND we know and love!
As the mom of a 23 weeker who passed and a 24 weeker who survived, I believe that preemie babies will show signs of fight or flight and I believe that the dr's should take into consideration the 'will' of the baby as much as the medical interventions.

8:31 AM  
Anonymous Chris and Vic said...

Neonatal Doc, you HAVE to believe that you (collectively, all neonatologists) are doing more good than harm, else, how could you continue?!

I believe you have to also ask yourself if you are then cherry-picking the studies that support that you are doing more good than harm.

AND you have to ask yourself, in addition, if it is okay to do any harm. Your oath says, "Above all, do NO harm," yes?

Instead of Sweden's or Britain's studies, which you selectively doubt or believe (suiting your purpose of salving your conscience?), follow up carefully on your own population, at your own hospital. Find out to your satisfaction if 23- to 25-weekers are living normal lives at home and at school. Find out the rate of family break-ups that parents say is related to having had a preemie. Find out how the IEPs at school go for these kids. Find out if the family income has decreased because one parent had to become a full-time care-giver for a child discharged on a monitor and meds round the clock. Spend time in the follow-up clinic asking the questions below the surface of the cut-and-dry questions on the questionnaires. Devise a barometer for grief, which parents experience related to their preemie.

It is not enough to resuscitate a baby because it feels a little funny to NOT resuscitate . . . You need to know that your interventions are clearly, cleanly doing no harm. If you are not VERY sure that you are doing no harm, then find a way to back off. The fallout from having begun one's life as a preemie is often tragic and always life-altering for those around the child.

If my words are just words, then go and spend time with your preemies in their homes, schools, daycares (if a daycare will even take a child with ex-preemie-type issues---I never found one for my ex--preemie).

Of course you don't have time for this. If lack of time (or interest) is a true statement and compelling, you will have to go on, cherry-picking the studies you choose to believe, and wondering . . . if you really have done NO harm.
Chris and Vic

9:29 AM  
Anonymous Christina said...

I wonder if studies done in Scandinavia can be fully extrapolated to our country? They are wealthy, homogenious, have relatively low populations and very high levels of literacy/education. I also imagine that the government provides high quality, free, services for children with disabilities.
I also thought that I read somewhere that Sweden did not resuscitate children under a certain birth weight which, if true, would certainly impact this study...I'll look for this information to see if I can find it- NND- do they mention this in the study?
I'm not arguing against the study outcomes, I just wonder if these factors might account for some of the differences seen between the Swedish study and the study in Great Britain. The time frames that the studies take into account might affect the results too- as heterogenious populations (such as Sweden in the 70s) are known to have healthier populations and better outcomes in a number of health factors, than do a highly mixed population (such as Great Britain in the 90s- and the US)

11:26 AM  
Blogger What The Hell Is This? said...

Wish my neonatal doc would have told me things like this when I agreed with him that heroic measures for my 23 weeks was not going to be performed.

11:35 AM  
Anonymous Anonymous said...

Upton Sinclair said it best...

It is difficult to get a man to understand something when his salary depends on his not understanding it.

11:40 AM  
Anonymous Anonymous said...

I think it is a shame that we (the USA) has not published a large follow-up study like this. With the amount of money and and the number of NICUs we have....where's the NICHD? Where's the Vermont-Oxford? Why aren't we doing this?

12:35 PM  
Blogger terri w/2 said...

Also, I wonder what the policy is in Sweden for continuing care on preemies with large IVH's. .do they d/c vents d/t grade IV IVH? If so, their population of survivors is going to look lots better than those countries like Britain (Epicure) and the U.S. (Baby Doe).

Does the study also take into consideration those severe kiddos who may have died in childhood? Seems like lots of variables that could be going on here.

2:42 PM  
Anonymous Lori said...

C & V -

You argue that preemies shouldn't be resuscitated if there is any possibility harm could be done? That is ridiculous. Any medical procedure can cause harm. Doesn't mean it shouldn't be done.

Take your guilt trip elsewhere.

3:22 PM  
Anonymous Anonymous said...

As the mother of a 22 weeker who did not survive, I obviously do not have the basis for comparison given that I have never had to care for a disabled child. However, had God offered me the alternative, I would have chosen anything and everything possible to save the life of my child. I know there are many that have called me selfish and/or stupid for that reason.

What saddens me is that in this "throw away society" it almost seems as though that applies to human life as well. I fully understand that sometimes saving a very sick baby could have a negative impact on the family as well as a questionable quality of life for the child. However, I could really do without the ad hominem attacks against those who wish for heroic measures and against the neonatalogists who have dedicated their lives to giving these tiny babies their very best.

Julie

3:46 PM  
Anonymous Anonymous said...

I get so angry when I hear preemie parents blast others because of the problems their children experience because of their prematurity. I am a mother to 24 weeker twins (one surviving and one who passed away at 13 days). It is not the dr.s fault that women go into preterm labor, and it's not their fault that bad things happen when babies are born that early. They are doing all they can to help these babies and to help the parents have a shot at being just that...parents. My daughter is 19 months old now and I cannot imagine my life without her. If we had given up on her simply because she was a 24 weeker, we would have missed so much beauty and joy. Have our lives changed because of her prematurity. Absolutely. Have I aged a considerable number of years beyond my actual age. You bet. Do I still get up in the middle of the night sometimes to make sure my daughter is still breathing. You better believe it. Do I constantly worry about what the future will hold and how her prematurity will effect her in the long run. A lot of the time I do. However, it is no one's fault that she was born early. It's no one's fault that we had to let go of her sister way too soon. Was that the hardest thing I have ever endured? Hands down it was. But that doesn't give me the right to blast and blame others for our outcome. It is my responsibility as the parent to do all that I can for my child, to love her unconditionally, and to be her advocate. It is my responsibilty to go above and beyond to provide a wonderful life for my her. And if that makes my life change in some ways that it might not have changed with a full term birth than so be it. Embrace your cup and stop blaming others for things they have no control over. Thank you, ND for choosing a career that allows you to help tiny babies and their families have a shot at life. And if you make a nice salary for that than I can think of no other career that deserves it more than the one you chose. L.

3:56 PM  
Anonymous just thinking said...

Se heres the thing.. Its not about YOU. Its about the "child". Do THEY deserve the suffering and pain? Take the MIN sextuplets. How fair was that to them to resucitate, only to feel pain and then pass on. Please spare me the "don't blame the dr's" nonsense. Of course they hold blame. Telling a parent false statistics is more than unfair, it is downright mean. Tell parents the whole story. If they are that self absorbed that they cant, for one second, see beyond themselves then fine, let them resuscitate. As long as they KNOW what they are doing is for THEM not the "child" My husband and I have a 25 weeker. Do we love him? Of course. We decided as soon as we knew he would be born that he would decide. We would offer intervention to start and go from there. We signed a DNR at 30 DOL because he was septic and shutting down. At some point the best interest of the child HAS to be in the equation. I submit that at 23 weeks, that is a very important question before the you even begin.

5:08 PM  
Anonymous Sue said...

1973-1979 was more or less 30 years ago, not 20! My daughter was born 21 years ago at 26 weeks. At that time we were told had she been born 5 years earlier, she would not have been saved.

I'm wondering exactly how many of the 24-28 weekers in the Swedish study were any earlier than 28 weeks, considering the standards (at least in the US) at that time were not to resucitate the earlier preemies?

5:54 PM  
Anonymous Anonymous said...

sue-
very curious...how is your daughter today?

mom of 24 weeker

6:21 PM  
Anonymous Anonymous said...

It is interesting to see that some parents want doctors to save their child, but then if the outcome is less than favorable, all of a sudden it is the doctor's fault. That's quite a convenient position to be in. They bite the hand that feeds them and then take a step back "oh, it was the doctor's fault"

7:51 PM  
Anonymous Anonymous said...

Vermont-Oxford data presented by Roger Soll, MD, at the Annual
Vermont Oxford Meeting, Dec. 2, 2006, Washington, DC.

Infants born <1001 grams between 1998 and 2003 and followed to 24
months corrected age

< 22 weeks GA
94 born,
99% died,
100% of survivors followed
100% of survivors severely impaired by age 2

22-23 weeks
713 born
67% died
80% of survivors followed
55% severely impaired by age 2

24-25 weeks
1710 born
29% died
75% of survivors followed
42% severely impaired by age 2

26-27 weeks
1431 born
15% died
72% followed
30% severely impaired by age 2

8:04 PM  
Blogger twinsx2 said...

Interesting, this recent Vermont-Oxford data(mostly from US centers) is far worse than the EPICure data (at 30 months) which concluded that 24% of their <26 week cohort were severely disabled.

My preemies will be 12 soon, born at 25 weeks weighing less than a pound an a half. One good, one not so good (Multiply disabled). After the experience, DH and I swore we would not go to the hospital again if I was in preterm labor. We had pretty good outcomes the first time but didn't want to trust our luck the second time. Thankfully it never came to that.

Oh and to anon 7:51 most parents are not the driving factor, the doctors are, even though most neos admit that they would not resusitate their own micro preemie.

9:14 PM  
Anonymous slt said...

twinsx2-parents can be the driving force depending on where in the US the premature infant is born. Let's not lay the blame (is that even the correct word to use) solely on the doctors who do the resuscitation.

Neodoc--You've stirred up the hornets' nest again with this one.

All of you who would prefer that 23 weekers (or whichever age offends you the most) not be resuscitated--what are you doing to cause change? What guidelines would you mandate for doctors to follow? How would you get parents to comply with those mandates?

10:08 PM  
Blogger terri w/2 said...

A couple of years ago, the March of Dimes in our area ran an article in our local paper, and a neonatologist was interviewed. Interestingly, she was trying to temper the miracle mentality a bit. .she was quoted in the newspaper saying that prematurity was now the leading cause of mental retardation. The CDC also has an article stating such. Interesting that there is such a chasm among neonatologists regarding outcomes.

I believe that parents should have a choice in resuscitation of extremely preterm infants, based on accurate data and knowledge of the intense suffering to save their lives. Being a 23 weeker in a NICU is not pretty. The accurate data - is the next question. One poster awhile back said something about "bleeding happy sunshine" - it sounds like the Swedish study may have a bit of that if it is so incredibly different that what Epicure and Vermont-Oxford studies are showing.

9:11 AM  
Anonymous Anonymous said...

Perhaps I can offer a different perspective on this whole issue, as a former preemie who learned plenty from my doctors about the thorny ethical debates that come from the birth of a preemie (particularly a sick one). More than 30 years ago, I was a 34-weeker with breathing problems and hydrocephalus that the doctors didn't want to touch with that proverbial ten-foot pole. My parents, however, saw it completely differently. They didn't seem to care much that I could wind up with some degree of disability; I was their child, and I needed help that they had a hard time getting. I heard about that "will of the baby" that anon 8:31 mentions; apparently I wanted to stick around even when the doctors had given up hope, and luckily my parents managed to find a doctor willing to take this situation head-on and do the necessary surgery, all the while not knowing if it would work.

I think "success" depends on who you ask or which study you're reading. Some would consider ANY degree of disability a failure; others look only at severity, but where do you draw the line? Though I still have ongoing issues related to my prematurity, I certainly wouldn't consider myself a "failure"; and yet, there are still times when I wonder why they persisted so, because I am cognizant enough to be at times excruciatingly aware of my limitations. And yet, I still am a firm believer that in most cases, a disabled life is far better than no life, other people's value judgments notwithstanding.

10:34 AM  
Blogger Heidi said...

A belated welcome back, and thank you for writing again. You were missed.

The study showed 18% of the 23 to 29 year olds born between 24 and 28 weeks gestation were living with parents. What's the number of young adults born full term still living with their parents? :)

We were painted a pretty doom and gloom picture when counseling with our NICU docs and my peris in the weeks before I delivered. They told us from 23 to 25 weeks the choice was ours to do comfort care or to try and save Bennett. I searched for some miracle preemie story, a study on outcomes, anything that would give us a glimmer of hope. I didn't find it, but we still chose to have them try - to give Bennett a chance and see what he did with it. And he ran with it.

I now get emails from preemie parents saying Bennett's story gives them hope. Is his outcome unusual? Is it giving false hope? Should we keep quiet so as to not mislead other parents? The studies have numbers for outcomes, the doctors may cite their statistics, but I think seeing the pictures and reading the story of other preemies may more influence parents' expectations for their child's possible future - for good or bad. Which always gives me pause before I share details of our story with other preemie parents.

1:18 PM  
Anonymous Anonymous said...

Heidi- Share away! I scoured the internet when I ran into pregnancy complications, and was so grateful for the positive stories vs....

Having seen both sides, I felt prepared and ready to let God decide. Why try to control hope?

7:11 PM  
Blogger neonataldoc said...

Excellent comments, all, thank you. I can't respond to all of them but in my next post will address a couple of issues.

Jacqui, beautifully put. Julie, thanks for the support.

Chris and Vic, I don't think I cherry pick studies because in the past I have discussed other studies with worse outcomes. As for doing no harm: Is it not harmful to not resuscitate the 23 weeker who would have had a good outcome?

ltl, too few babies in the Epicure study received prenatal steroids and too many received post natal steroids. Also, their survival rates were quite different from those currently seen in the U.S.

Anonymous 11:08, in general a premie with no other complicating factors has a better chance than a premie of similar gestational age with complicating factors.

Gotta stop - time flies.

7:28 PM  
Blogger twinsx2 said...

Since Helen has been at the hospital for several weeks dealing with her 31-year-old former preemie and his continuing preemie-related medical issues, I will take the bait and jump in. Because “Who can protest and does not is an accomplice to the act”- The Talmud

The number of preemies in the "26 weeks and under" group is 43 (constituting 14%) out of a cohort of 317 24-28 weekers. They are not analyzed separately, but are lumped in with the 274 27-28 week preemies, so it is hard to say anything about their outcomes. It should be noted that 13.2% of this entire cohort is classified as disabled, and over 18% of the cohort still lives at home. A further 22% are "students" (what kind of school we aren't told). According to this Swedish study 15% of the children are in special schools. Additionally, 59% were having "school difficulties" which meant repetition of a grade and/or use of part-time or full-time special educational resources (presumably in a regular school). In other words a majority was having serious school difficulties.

45% had one or more chronic health conditions at age 11.

As for the mental health issues in the children, here is the full
list of abnormal behaviors above the 90th percentile cutoff values
reported (by parents, then teachers, then the children themselves):

by parent report child was/had:
anxious/depressed 27%
withdrawn 36%
somatic complaints 13%
social problems 25%
thought problems 20%
attention problems 30%
aggressive behavior 13%
delinquent behavior 11%
internalizing behavior 33%
externalizing 10%

by teachers' report child was/had:
anxious/depressed 23%
withdrawn 23%
somatic complaints 21%
social problems 21%
thought problems 30%
attention problems 24%
aggressive behavior 21%
delinquent behavior 23%
internalizing 25%
externalizing 18%

The children themselves reported only a 12% rate of any such problems.

[The study citation is Farooqi et al. "Mental Health and social
competencies of 10-to-12-year-old children born at 23 to 25 weeks of
gestation in the 1990s: A Swedish National Prospective Follow-up
Study" _Pediatrics_ 2007;120:118-133.]

20 to 30% of the children had what are termed "thought problems"
meaning they "hear things [which are not there]," "see things[not
there]," "can't get mind off of [various thoughts]" "repeat acts,"
engage in "strange behaviors," have irrational "fears" and /or engage
in "self-harming" behavior.

These are symptoms of autism or schizophrenia and the authors note a
number of studies linking autism and schizophrenia to low birth
weight and/or prematurity, particularly in children with visual
impairment due to ROP.

I have two 25-week former preemies, one good, one not so good. My one “good” outcome is almost 12, fully included in a regular ed classroom doing grade level work with no accommodations. It might surprise readers to learn that he is NOT expected to live independently or to hold a job outside of a workshop situation. We are hopeful that it will not be this way and are working for it not to be. But given his issues with “executive functioning” I can’t see him having a career, maybe a little job of some sort. “Would you like fries with that?”

10:15 PM  
Anonymous Chris and Vic said...

ND, you ask if it is "not harmful to not resuscitate the 23-weekder who would have had a good outocme?"

Do you also invest in hedge funds?

Why do YOU get to look at the studeis and decide what is an acceptable risk? (Or an acceptable study?) As opposed to the parents looking at the studies or at least getting study data from you, and then making the decision for themselves?

Then, it is probably also your job or the job of the ethics committee in your institution, to discuss with the parents "Ethics 101" or "Quality of Life 101".

Then, if the parents still want their 23-weeker to be resuscitated,
you must certainly go ahead. The final decision is with them---they get to decide what is an acceptable risk.
Chris and Vic

10:58 PM  
Anonymous Eva said...

I am in Sweden right now, and just wanted to mention that living with one´s parents at those ages isn´t even very uncommon, disability or not. I have several relatives who lived at home until their mid and late twenties.

9:35 AM  
Anonymous Anonymous said...

twins x2,

Anonymous 10:34 here...Your commentary hit painfully close to home for this former preemie. Particularly this quote: "It might surprise readers to learn that he is NOT expected to live independently or hold a job outside of a workshop situation. But given his issues with executive functioning, I can't see him having a career, maybe a little job of some sort." Well, I have spent the decade and a half since my high school graduation either in college (I have three degrees) or working at a low-paying, dead-end retail job not much above "do you want fries with that"...owing to the cognitive consequences of surviving being a preemie with hydrocephalus.

I am, by all accounts, of "normal" intelligence (I maintained at least a 3.2 for all three of my college degrees), but damned if I can manage to multitask well enough to hold down a job commensurate with that education, or actually apply all the stuff I learned to a job situation. NLD/ADHD is a nightmare in that regard.

That doesn't, however, negate my appreciation for the doctors who gave me a chance at life even when things were looking dire. It could have been a hell of a lot worse given where I started.

10:04 AM  
Anonymous Anonymous said...

Just one question: In what context is "resuscitation" being used? I know all micropreemies would have to be "resuscitated" with oxygen at some point. But, if they are breathing at birth, do you consider the use of oxygen in the NICU to be resuscitation? Or, are you just using the term for preemies who are not breathing at birth and have to be intubated immediately? Or, are all micropreemies NOT BREATHING on their own at all at birth?
The resuscitation technique which I question is when a very early preemie is not breathing at birth and is also born in extremely poor condition, such as lack of muscle tone, heartbeat, poor color, etc.
Thanks!

4:41 PM  
Blogger neonataldoc said...

Chris and Vic: I do discuss honest outcome statistics with the parents and respect their decision regarding resuscitation of 23 weekers. But the fact of the matter is that many people avoid making a decision, or look to me for guidance. Not all parents can handle making such big decisions on short notice.

5:31 PM  
Blogger twinsx2 said...

"Not all parents can handle making such big decisions on short notice."

That is complete and utter BS. It is your JOB to allow them to make a decision not yours. Remember informed consent?

6:13 PM  
Anonymous Long Term Listener said...

I have to say that there are parents that will simply say for example "Allah will decide" or their equivalent version.
They do walk away .. hard as it may sound, they do opt out of the decision and so remove any responsibility for what happens.

7:43 PM  
Anonymous Anonymous said...

Twinsx2 -

And when the parents don't/won't/can't decide...what's the neo to do then?

I assume you have personal experience with pre-term birth, but you obviously aren't in touch with the day-to-day reality of interactions betweens neos and preemie parents.

9:26 PM  
Anonymous Anonymous said...

Mom to 24 weeker asked: very curious...how is your daughter today?

Anonymous 6:21 - My daughter is in her third year of college going for a degree in EC Education. It's been a VERY rough road to this point. Anonoymous 10:34 gives me pause - my daughter has some of the same problems (ADHD, executive functioning troubles) and earned a 3.3 last semester. I hope she can hold a job after graduation.

Sue

4:01 PM  
Anonymous Anonymous said...

Sue,

Anonymous 10:34 again...I certainly didn't intend to give you pause regarding your daughter's potential, but I must say that holding the same dead-end job for many years despite all of my education has left me more than a little disgusted, worried, and saddened about the whole ball of wax. I've had many people state in no uncertain terms that they were sure I had more than enough intelligence to accomplish my original goal of going to medical school; and yet, I still get heavily criticized for being unable to do any of a number of things that are expected in much lower-level situations (like multitasking, or properly handling constant interruption, or dealing with new "rules" or situations... all of which I am lousy at). The conflict is enough to drive the sanest person out of their gourd, and was best expressed when my mother once wondered, "How come you can know so much about medicine and yet be having such trouble getting through school?" That's the crazy neurological paradox I live with as a result of prematurity and hydrocephalus. The hardest part is that so many people just don't "get it", and I wind up getting somehow penalized as a result. Sometimes I wish I could whip out a CAT scan and show them where this all comes from. I just pray nothing even vaguely similar to this kind of situation ever happens to your daughter. I wouldn't wish it on my worst enemy.

12:17 AM  
Blogger Aurelia said...

As someone with ADD, can I just correct something? Having wonderful, fabulous jobs you love is possible with ADD.

I've had my struggles to be sure, but Concerta and Adderall and Blackberry go a long way toward fixing that. Frankly, almost every ER & ICU Doc I know has ADD. Same for most politicians, trial/criminal lawyers, mathmaticians, scientists, stock traders. Hell, all of Wall Street has ADD. They can't find their socks, or organize a pile of papers, but who cares, I hire people to do that for me, and so do they!

I know preemie related issues are slightly different, but I couldn't let those comments just sit.

1:12 AM  
Anonymous Anonymous said...

Aurelia,

Anonymous 10:34 here to clarify...it's not the AD(H)D part of it that causes me so many problems; it's the NLD. So I wasn't implying that there was any sort of connection between the dead-end job problem and ADD. When you have more than one diagnosis, there are going to be more issues. And the "classic" type of ADHD you're describing is exactly the opposite of the problems I have; unlike those frenetic types you describe (like the ER docs and Wall Street types), I cannot function at that pace or keep track of several tasks simultaneously. So I really wasn't "dissing" ADD at all.

10:29 AM  
Blogger Aurelia said...

Anonymous 10:34,

Thanks for clarifying, and I agree that classic ADHD is more likely to like the frenetic hyper guys and stock traders types.

But some of those jobs I mentioned, like scientists, researchers, lawyers (instead of trial, tax? pie in the sky international law?), are even better as ADD inattentive or NLD. ADD inattentive is very much like NLD. When I was diagnosed just before my son, those two were tossed back and forth as diagnoses a lot until it was decided.

I know lawyers who lose every single piece of paper, but it doesn't matter because someone else helps keep track of that. I don't remember what time it is or what I had for breakfast, but I can focus on the few subjects I love to work on.

I know personally several mathematicians and computer scientists who have NLD. And they are stunningly brilliant at it and also have spouses and assistants who take care of the mundane. And they live independently.

Perfect? No...but please for yourself, don't lose hope and I do hope anyone reading this won't assume that their child can't succeed. Perceptual/emotional disabilities are not the same as severe IQ related ones. Not saying it isn't hard, cause I know it is, but it's a very different kettle of fish, is all.

4:08 PM  
Anonymous Anonymous said...

Aurelia,

Anonymous 10:34 again...I know this is kind of a warped way to look at it, but in a certain sense it can be much harder on your peace of mind to have something like NLD, because then you are perfectly aware of the limitations it imposes; but...I also know that given where I started, things could be a whole heck of a lot worse. After all, they were telling my parents when I was born that I would either wind up dead or severely retarded (his phrasing, not mine). So...yeah, it might be a slightly different "kettle of fish", but it's not completely disconnected. The hard part, at least personally, is reconciling all the years when I thought I could override those limitations to get where I so passionately wanted to go (career-wise), and hitting that proverbial brick wall. Picking myself up again and finding a new route has not been a simple or fast process, and sometimes it leaves us all scratching our heads out of sheer befuddlement. That's the hard part. Sometimes things might "look good" on the outside for a former preemie, but it's the stuff they don't see that ties you up in knots and makes things crazy at times.

And as for the distinction between perceptual, emotional, and intellectual...these are all aspects of cognition that can have influence on each other, and can be affected to varying degrees by the neurological sequelae that may come from prematurity. Doesn't really matter much what label the "experts" put on such problems, and it may vary widely between individuals, but the point of it is that the problems are there and must be handled APPROPRIATELY for the affected person to have any chance at a reasonably happy life. I could tell you stories about this that would make your head spin; fortunately a blog comment space isn't really the right place.

11:20 PM  
Blogger Susie said...

I know I'm a little late, but I wanted to chime in as well.

My husband and I are thinking about trying for children soon and I've been doing research so that we know all our options should something sad happen.

I'm 24 years old, and a former 29 weeker myself. In a lot of ways that has to have influenced me, because I'm probably the poster child success story. I'm in the gifted range IQ wise, no physical disabilities, and no school issues really showed up until university where I was diagnosed with ADD and a nonverbal learning disability.

I understand that I was born later than the "micropreemies" that are under discussion now but I was told that for the times, I was probably considered one! I spent nearly 90 days in the ICU.

My husband and I are still undecided as what we want to do if I go into premature labour, but I agree with ND that he should err on the side of caution when saving a premature baby. That child could be like me- no problems at all, and failing to resuscitate that child would be a terrible loss.

Yes, there are chances of problems. But at what point do you write off your own child as potentially being that miracle baby?

I know that's the kind of hype in the media... but as a miracle baby myself, I feel it acutely.

3:37 PM  
Blogger Christy said...

Wow, what a hot button. I just stumbled onto your blog. I will continue to follow and see your opinions on different issues. I have a 3.5y/o 23 weeker. I really had little idea that parents blame you for their kiddos issues. I was given maybe too much information on how my son's outcome would be. I NEVER for one second did not want his life fought for. It has changed our life considerably. I have to work a job with A LOT of flexiblity. We are at the docs or therapy it seems all the time. The only delay we see is about 1 yr speech delay. He has worked hard for his entire life. I work with severe and profound disabled kids and adults as a social worker and even though it is very hard on the families. None of the families I work with would not have their family member with them.

5:41 PM  
Anonymous Anonymous said...

Neo Doc. Thank you for taking the time to write that premature babies do have positive outcomes along with negative ones. Many people in our society are only concerned with themselves and having the best of everything, including a healthy child...who wouldn't?? I am the proud mother of a 22 weeker who is doing excellent!! Excellent meaning, only a very minor case of cp, and a slight delay in cognitive development. She is rated at 70% on the charts for development for her actual age (vs. corrected)...now we could all say that is something to brag about! She is a charmer and everyone that meets her says how pretty and outgoing she is. Before she was born I was on bedrest, fully aware that it was possible that I could delivery prematurely. I took this time and researched statistics. I had a very difficult time finding stories on the outcomes of 22 weekers (more on 23+) but given the few POSITIVE facts/stories out there, we insisted that heroic measures be taken for our daughter and the Doctors themselves understood that the course is in the hands of God. So in writing to you today, I'm thanking you for putting the positive facts out there so parents can support the decision of resuscitating. I also had newspaper articles written on my daughter to help educate the public. Some people are against taking heroic measures, but to quote someone 'if you were in need of care due to some tragic event, ex. car accident, who's to say that you should not be given care because of how you will have changed...paralysis, brain damage etc.?' How disheartening to know that people could be so selfish to think that they would rather their brother, sister etc. die because they may end up with a disability. Life is not our choice, it is God's greatest gift.
~Nicole

3:25 PM  
Anonymous Anonymous said...

Things can and do go wrong with the most healthy of people in life, unfortunate accidents can leave one who had a great quality of life with a disability even as an adult but would we choose to end the life of someone we have come to know and love who started out healthy but will live life with a disability?

8:42 AM  
Anonymous Anonymous said...

A friend of mine had a 23 weeker after many fertility issues and losses. His wife was in the hospital on full bed rest in the head down position for over a month before the delivery. They were warned that once the baby hit 24 weeks gestation, there would be no resuscitation choices--under state law everything possible would then be done to their baby until she died.

After this warning, they seriously considered ending bed rest to bring on labor before 24 weeks, and discussed in detail what they would do with a severely handicapped child. It is awful that the choices would no longer be theirs, even if the baby had major brain bleeds or otherwise looked like she wouldn't make it.

As it turns out, their daughter luckily escaped every major physical disability (she has some minor vision issues). They thought they had dodged a bullet, but no one ever explained to them the likely cognitive issues with such a micropreemie. They didn't start early intervention until after she was 2, since everything looked ok--she even did OK eating (issues, but no feeding tube required). But now she is almost 3, and only has 6 words. They are really concerned about what will happen when she ages out of the state provided early intervention program.

They were considering adopting a sibling, but now they don't think they can afford it. My friend is very grateful that they haven't added another child, now that it is clear they will need to provide therapy for her.

No one EVER told them that this might happen--that she might escape serious physical disabilities that are obvious, and instead have serious cognitive problems (they were told "learning disabilities like dyslexia"). It wouldn't have changed their resuscitation choices, but it definitely would have changed their family and work/life choices that now need to be realigned. They are just grateful they hadn't yet added another child to the family, due to the looming therapy costs (even with "good" insurance).

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1:30 AM  
Anonymous Anonymous said...

Neo Natal Doc- " I feel a little funny if I don't resuscitate a 23 weeker." With all due respect, you're an idiot. I was born at 26 weeks and I have a had a 'good' outcome. I am 26 years old and have no OBVIOUS impairments. However, I can't keep a job, and I've flunked out of graduate school due to my NVLD. I am a burden on my long suffering parents. We are now bankrupt because of my medical bills. Their marriage has disintegrated because of the stress. Whatever's wrong with my brain means that antidepressants don't work. I am often too depressed to get out of bed.I am in constant pain from my residual c.p. and i.b.s.I think about suicide daily but I lack the executive function neccessary to carry it out. Do I wish I had not been revived? Frankly, yes. It would have spared everyone a lot of pain, not just me. I know that I sound ungrateful and I don't care. Anonymous 10:34, I hear you. NVLD makes daily life a struggle. I wish I could say things will get easier. Maybe you can go to medical school eventually or find a job that better suits your talents. Your post made me feel better than I have in weeks. It's hard for us to get along in world, and I wish more people would think about the LONG TERM consquences of neurological damage that is an inevitable result of VLBW.

2:58 AM  
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4:13 PM  

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