Thursday, June 14, 2007

Advocates

Why, my friend wanted to know, would I definitely resuscitate a baby with Down syndrome, who has a near certainty of having an IQ in the severely impaired range, but for a 23 weeks gestation baby, who has a 50% chance of being in the normal range, give parents the choice of whether or not they wanted their baby resuscitated?

I sighed when I heard the question. It came at a time when on my blog, in response to strong advocates for parents of premature babies, I was trying to stick up for the rights of extremely preterm babies by saying it was hard to let them die when you knew a certain percentage of those you let die would have been normal. At the same time I was having on ongoing conversation with my friend, a strong advocate for babies with gestational ages at 23 and 24 weeks, who thinks that all 23 weekers should be resuscitated, regardless. No fair, I thought. I was taking heat from both sides.

But it's a good question, without a readily apparent answer. I told my friend that with 23 weekers you had to be worried about the kids who might get severe cerebral palsy and require total care, which could be a life of suffering for the child and a huge change in the life of the parents. In other words, twenty-three weekers can turn out better than kids with Down syndrome, but they can also turn out a lot worse. I also mentioned that with the legal climate and the history of the Baby Doe rules, we are reluctant to let Down syndrome babies die without resuscitation. My friend was less than overwhelmed by my arguments.

Having thought about it, though, I think there are a couple of other reasons why we treat the Down syndrome kids differently than the earliest premies, even though the premies have a better chance of having a normal outcome than the Down kids. For one thing, Down syndrome kids don't usually require the huge resuscitative measures and months of intensive care that a 23 weeker does.

But perhaps just as importantly, most parents of Down syndrome kids have already had their chance at saying no to having the baby. Most cases of Down syndrome are diagnosed prenatally now, and parents are often given the chance to terminate the pregnancy. Although I haven't personally seen the hard data on this, I've heard it said that 60 to 90% of parents opt to terminate the pregnancy when told the baby has Down syndrome.

It's funny. When last year I said that Down syndrome kids had no chance of having normal intelligence, I was raked over the coals by some of the parents of Down syndrome children. When I speak up for 23 to 24 weekers, though, it seems the opposite side, those in favor of more parental choice regarding resuscitation, are more vocal. Why is this? Where are the parents advocating for the premies and their right to resuscitation? I don't know, but I'll just keep plugging away in the middle.

18 Comments:

Blogger Aurelia said...

Part of the issue Doc is that there is a general perception among the public that babies with Down's can survive pregnancy. When in fact, survival is not assured.

According to my geneticist, the miscarriage and stillbirth rate for Downs' babies is 90%. Many of the infants die after birth from leukemia, or other physical problems that are very difficult to fix.

The Down's kids you see who are alive and healthy and high-functioning? They truly are rare miracles.

As for the contention that many of the parents have already chosen not to terminate their pregnancies--this is based on the idea that chromosomal abnormalities are associated with age. There are no evidence based studies on this, because no one tracks pregnancies, outcomes, and causes of losses. It was all based on assumptions. We do know that over 70% of Downs' babies are born to women under 35 in Canada. Women who have never had amnios or been offered the nuchal screening, and therefore have never had the change to make a choice, or be prepared. Which is why ACOG & the SOGC just changed guidelines and recommended offering all women screening. The termination figures sound about right, but these again, are only women who have been offered prenatal diagnosis, the over 35 crowd. So the overall number is less meaningful.

I can't answer you on the question of where the parents of the 23 weekers who want resuscitation are. But for the Downs' issue--you are hearing from the parents of living children. The grieving parents of Downs babies who never made it, won't show up in a post like that.

I do think that you will find a more balanced discussion if we had better research and better stats. As it is, everyone feels upset and gets defensive. Not helpful for any of us, I think.

1:25 AM  
Blogger Tilly Cat & Pip-Squeak said...

Nice post ND. And you make very good points, from my point of view as someone who would opt to fight for a preemie's survival and would not terminate a DS pregnancy.

A few thoughts in random order: (Sorry about typos, nursing at keybord over here, and have to be quick before my toddler pounces)

1)The image most parents have about people with DS is, if anything, MORE negative than the possible outcome of children being born with the condition now. At least if you ask most parents of children with DS, they have to constantly fight to prove their child's worth and battle predjudice. (This is my impression, from reading various message boards.)

2) The statistics about % who terminate DS pregnancies, appart from ignoring moms not offered an amnio due to age, also ignores moms who refuse an amnio, because the would not consider terminating.

3) From what I understand from the posts of Helen Harrison and others quoting devastating outcomes for premies and discusing the wisdom of not resucitating, (and I say this although I find them overly blunt and pessimistic, and I'm not too crazy about them -but hey, freedom of speech and all,) They are mostly fighting to establish the RIGHT for premie parents to examine the OPTION not to resuss. DS parents have this option readily available. Also, they are trying to make sure premie aoutcomes are not presented as OVERLY POSSITIVE (hence the constant barrage of horrible outcomes that bothers some of us so much.) DS parents have the opossite problem to that, their children's possible outcomes have never been protrayed as too good to be true.

Hope these are fair points. Also hope none of it sounds offensive. Frankly, I'm in a rush and don't have time to read it over, so take my word that I don't intend to offend anyone :)

Anna

6:34 AM  
Anonymous Future of Hope said...

ND, there are those of us preemie parents that do advocate for the routine resusitation of any gestation preemie that shows signs of life. I have said before, and I will say it again - Let the baby take the lead. How is he handling the resus? Can he be stabilized or is he jumping from one life-threatening crisis to the next? Bottom line, is he trying to live, or is he trying to die? The same logic needs to be applied in the NICU as well. Just because a child was resusciated, doesn't mean that long term aggressive care is always the "right" decision. But I feel that these decisions should be made based on the babies current physical state, and not on the future shadow of unknown disability.

9:24 AM  
Anonymous Susan Kuchinskas said...

I'm glad you're blogging again. Your writing is extremely valuable; this is information we need to know about and we need to hear your experiences.

You've chosen a courageous path, in your work and in your writing. Please accept the anger and criticism you might sometimes rouse and keep going.

10:56 AM  
Anonymous Anonymous said...

ND,
Great post. I am the mom of a 24 weeker and my good friend is the mom of a Downs baby. We often reflect on our different and similar situations. I am so afraid of the stats reagrading prenatal tests..as you will see in the attached NY Times article, it's becoming increasingly common for parents to choose to terminate and just try again when they get a Downs rx. I encourage everyone to read this article as our culture is moving into a very scary "selective" society.
http://www.nytimes.com/2007/05/09/us/09down.html?ex=1182052800&en=a6791acbe1fedff0&ei=5070

Soon we are going to be terminating boy babies b/c of the fear of autism. When will this insanity stop. We need to embrace ALL children not just the "perfect" ones.
So glad you are back ND! And keep saving the small ones, they are wonderful humans too!

12:21 PM  
Anonymous Anonymous said...

I will forever be grateful to the neodocs who kept "plugging along" in my son's NICU. I am most thankful to the ones who addressed me honestly and answered my questions without assuming I was too illiterate to muddle my way through a pubmed search and at least understand the abstract. The others (and many nurses), who approached every parent conversation with a can of Krylon High Gloss Mystic Rose at the ready, may have had the technical skill to keep our son alive, but created expectations that were later the source of much heartache.

Those preemie parents who shout for better information are not necessarily advocating against resusitation of 22-26 weekers. What the problem boils down to is the MOD, the media and many doctors (not directed at you ND) are loathe to acknowledge that the ability to resuscitate has far outstripped the technology to "incubate" and sustain through that critical developmental period without inflicting unintended damage.

Years ago, the birth of a 23 weeker was generally accepted as a miscarriage. Now, if a pregnant woman goes into labor at 23 weeks, the neodoc's recitation of the numerous things that can go wrong blur in her head like the pages of possible side effects that come with every medicine from the pharmacy ("may cause dry mouth, drowsiness, sleeplessness, constipation, diarhea, heart failure. . ."). She may comb her own knowledge base if offered the choice not to resuscitate and the only thing that comes to mind is that 21 weeker from Florida who went home with a "bright future"and the dozen babies born to those 2 families within 10 hrs (they did alright didn't they?). She will be wholly unprepared for the rocks and hard places that will face her--too much oxygen can cause blindness, too little- brain damage, the tpn can cause liver damage but feeding can cause bowel perforations, severe learning disabilities and mental illnesses generally don't show up on the test used to cheerily discharge your 2 year old from early intervention, etc. ad infinitum.

I've struggled to form an analogy that might explain why some preemie parents wish they had been better informed. There isn't one that works well. Human cloning comes to mind--the general public would never allow it to happen if the clones had the same outcome statistics as preemies. Stephen King's "Pet Cemetary" comes to mind. Before I draw flames on that one, keep in mind the lead character still brought his wife up there after knowing what it did to his cat and kid.

I declined DS testing because it wouldn't have changed my decision to proceed with the pg. But DS is more of a known quantity. Being fully aware of the preemie path probably wouldn't have changed my mind about a DNR, either, but at least my expectations wouldn't have had to undergo repeated crushing.

Kassie

3:49 PM  
Anonymous Anonymous said...

I am the mom of a surviving twin born at 24 weeks. We spent a long and challenging 96 days in the NICU and were told various forms of "doom and gloom" by many neos and others with a more "realistic yet somewhat positive approach." Our twin that did not survive passed away at 13 days because of NEC. When we were in the trenches fighting with her against this horrible infection, we were told by some that if she came through this, she would be "damaged." Our response: "Damaged or not, she is our child and we will take her and care for her and love her "however" she is." She was our child and if it meant us having to change our lifestyle to accomodate her, than by all means we would do whatever it took. When it was evident that nothing was going to work to save her and we had to let her go, it was devastating and by far the hardest lesson in love and loss that I have ever had to endure. Our surviving twin had a relatively uneventful NICU stay and is a happy, healthy, thriving - yet petite - toddler now and is the absolute joy of our lives. Will she have future problems? Maybe. Will she struggle because she was a 24 weeker? Maybe. Would I ever tell a dr. not to save a future child who was going to be born at 24 weeks...never...23 weeks...never. It is a long and challeging road and there will always be the scars to remind us of the journey (PDA ligation scar, white places where IVs were placed, and the scars on our hearts and in our minds)but the rewards are far greater and I would always choose to give my child a chance. For me, there is no other option. LC

5:01 PM  
Blogger 23wktwins'mommy said...

I support resuscitation of 23 weekers!!!!
I intended to write a long and detailed comment, but there is too much I want to say and it really turned into a post of my own...sp I deleted a bunch of it. (It's still too long as it is.)
Anyway, I love my children, they were born at 23.5, we chose to resuscitate, I'll never regret my decision, and I support resuscitation of 23 weekers. But, I'm also in favor of parent's right to end support when the medical team and the family agree there is nothing more medically that can be done for these tiny babies.
We made choices:
Our children would have died in our arms not while on the vent, in other words, we weren't just going to keep them on the vent when it was clear there was nothing more that could be done. If their hearts gave out in those early days, we would not have taken drastic measures to restart them. We believed they would declare themselves, and I am convinced they did. Had we not chose resuscitation in the first place, we would have never given them the chance.
As for the neo docs talking to me about outcomes...they did. They didn't tell me every single example of every single child that was ever born too early, but rather talked about the possible outcomes that are most reported and researched.
And as for Downs Sydrome, in a social service program I worked for, I once had a participant who was a 20 year old mother, who unexpectedly gave birth to a baby boy with Down's Syndrome. She wasn't married, didn't go to college, and this wasn't a planned pregnancy. Nevertheless, she was one of the most amazing mothers I have ever witnessed. She did her son's EI excersises with him every day, showed him countless amounts of attention and love, and never once complained or wished he had never been born.
I'm not going to judge others, because there really is no good that can come from that. I can just share my experiences and be an advocate for my children and for our family's decision to give them a shot at life.

10:58 PM  
Blogger L.B. said...

There will always be controversy regarding the resuscitation of the youngest preemies. With these babies, the parents deserve all the information in order to make the decision. The parents are the ones that will be most affected by both the decision and the outcome.

I am the parent of a preemie born at 28 weeks. He will be 20 this year and has no problems whatsoever. Had he been born earlier, there is no question that we would have wanted everything possible done for him. Prior to his birth, I had the opinion that sometimes it is best to let a baby die. It is funny how your feeling can change once YOUR baby is the baby in question.

1:37 PM  
Blogger Twins x two said...

I am a mom of twins who were born at 31 weeks - and yes, both of my children were intubated and resusitated. We told the Neo doc, "do whatever you have to do to save our babies" - and that was at 31 weeks. I am 100% sure that my answer would have been the same if my babies were born at 23 weeks.
My friend just delievered twins at 38 weeks - both babies have downs and 1 baby was still born. Both girls were fine at 37 weeks - What cause the other to die in one week? The Downs? Her child that survived also had to be resusitated - at 38 weeks. Is this normal for downs babies?

And what is with the prenatal downs test that they do? 3 of my friend have done the test - 2 of them got positive test results for downs and when the babies were born - no signs of Down syndrom. The other who did the test - her results came back neg for Downs and when her baby was born - the docs told her that her baby has down syndrom. I don't get it.
So, with those results and outcomes, how can anyone terminate their pregnancy without really knowing if their child has downs or not??

11:08 PM  
Anonymous Anonymous said...

It was my understanding that due to the current Baby Doe laws that parents no longer have an option about whether to resuscitate - handicapped, premature or whatever. My main problem is when neos resuscitate extremely early preemies who have zero to practically no signs of life and keep up the resuscitation even when they know the outcome will be severe, then don't adequately inform the parents of probable longterm outcome. I keep reading other posts where NICU staff provide plenty of gloom and doom. That just wasn't my experience. Instead, we were either not told anything, not told enough to make a reasoned decision, not allowed input on medical decisions or were told how great our baby was doing, when in fact, he wasn't doing well at all, and we could see that.
I think the question I most want to ask NICUs like the one we experienced is this: Why do you keep parents of babies with Down Syndrome and other serious conditions so well informed while you don't do the same for parents of preemies, particularly those of preemies that you know have severe brain damage and other life-long medical problems? Why do you choose to be so honest and forthcoming with one group and so dishonest and evasive with another group?
Those reasons are the answer to the questions that NeoNatal Doc posed.

1:04 AM  
Blogger Michelle said...

my baby girl was born with DS, and is now 8 years old. I think that the grass is always greener on the other side. I think with DS, you tend to hear ONLY the negatives. Everyone is quick to tell you your child will be a walking vegetable, wont read, wont drive, wont ever live independently. The truth is so far from that that it is shocking. My daughter is VERY independent, she is also on the high-functioning end of the spectrum, which NO ONE could have predicted at birth. She spent 9 days in the NICU for heart defects. She read at 4, tied shoes at 3, and is a very average little kid now. Some delays, to be sure, but nothing even close to the life predicted for her.

I think that the main reason it is hard to stop treating babies with DS vs preemies is this: the babies with DS dont have as many pressing MEDICAL issues, their main prognosis is their developmental disability. Often, you Docs arent fighting to keep them breathing, to keep hearts beating, etc. You may battle heart or digestive issues, but those are surmountable in most cases. With preemies, you are fighting a constant battle physically to keep things ticking. Any number of things could go wrong, and there are battles at every corner that must feel overwhelmingly dangerous.

With DS, you often get one "biggie" and other than that you are "just" dealing with the issue of development/IQ. I think that makes it a moral leap (Baby Doe is a perfect example, it was more palatable because he had a medical concern that overrode his developmental one) because you are not really sparing them MEDICAL interventions, but a life that you may pre-suppose is not worth living.

With a preemie, you have any number of "opportunities" to discontinue care, with DS it is generally fixable, and there isnt the contant beeping of machines and the recurring challenge of knowing if this is too far/too much.

I think what I am trying to say is that your conscience is in charge. You might feel better about stopping medical care on a baby who has physically been through repeated traumas, your psyche can tell you that you are sparing him/her pain. But with DS, any judgement calls are exactly that, you have made a decision about their worth that depends on their intellectual ability, and your mind rails against that choice.

You almost have an excuse, in preemies, to end true suffering. In DS, you have to take a stance, "IS this suffering, or is it just not what *I* would want?" I think Doctors want to heal, to fix, to STOP hurting. I think somewhere under their tough exteriors, they really just want to keep kids from hurting.

5:28 PM  
Blogger neonataldoc said...

Thanks, all, for the many great comments. Anna, Kassie, LC, Michelle, and too many others to answer them all: excellent thoughts.

10:19 PM  
Anonymous Nathansmomsherry said...

My Nathan was born one day short of 38 weeks and was resusitated at birth. His APGARS 1-2-6! We found out 3 days later that he had Down syndrome. He went under the radar with the prenatal testing. One Neonatal doc even question why we did not have an amnio? We were talked out of it by the Genetisist...he declared a healthy baby boy with no soft markers to indicate that he had Down syndrome. If we had known we were told we could have made him a DNR at delivery. Scarry....I wouldn't have this funny delightful curious little boy (almost 3). We got lucky! Nate is not that delayed and very healthy!

9:20 AM  
Anonymous Anonymous said...

Your blog became home to a group of dysfunctional fanatics who advocate leaving preemies babies to die, to pave the way for euthanizing the kids they already have and can't handle. You are caved into their pressure to be popular. You still use their ridiculous language of "parental choice".
Honor Killings are "parental choice" and "family based" life and death decisions of offspring too. They too hide crass economic motives to kill thier own kids behind more socially acceptable concepts like 'honor' and 'morality'.
From Wikipedia:
"women who choose (significant others) outside of their family's ethnic and/or religious community. .......are felt as an unbearable disruption of men's planned economic and political networks.
Similarly, in certain cultures a raped single woman will garner no bride price if she marries; thus she will be regarded as a worthless burden on the family ..... It is not that such women do not generate value or are not valuable members of the family; but rather ........that from the (parents viewpoint), 'deviant' women appear as intolerable costs; their inherent worth and contributions are discounted..."

10:23 AM  
Blogger terri w/2 said...

I am one of the parents you claim to speak of, and no where on ND's blog have I or any "those" parents claimed to want to kill our childen at birth (choosing to allow a natural death in certain circumstances as opposed to neonatal torture, yes). .nor have I or anyone advocated for euthanasia of our children because we can't "handle" them. If society is unable and unwilling to assist families like mine to adequately provide life-long care for extremely disabled survivors of extreme prematurity, families must be offered a choice. In addition, the massive suffering of some of our preemies must be taken into consideration - torture them to live an extremely limited, pain-filled life, or allow nature to take it's course without intervention and allow these babies to go to God? We don't advocate "killing" or "euthanasia" - we advocate for *humane care*, and sometimes the most humane thing to do with extremely preterm infants, and those with massive IVH's, is to do nothing.

Terri, RN

1:03 PM  
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1:43 AM  
Anonymous Anonymous said...

I'm the mother of a 23 weeker. She is 8.5 months old and born with 480 grams. She had PDA ligation, ROP laser surgery and hernia repair surgeries. After 8 months in the NICU I can tell you that not all the cases are the same and I belive science tend to generalize all cases. I saw many babies died, they were older and heavier than my little girl, but there is a mysterious power call GOD that he is the one that give lifes and end lifes, not us. My baby is home now she is doing pretty good, We have to do a lot of therapy, but she is so alert and full of life that I did not regret my decision to resucitate her. I think doctors have to do more researches with small preemies since technology is helping them a lot. I speak LOUD & PROUD for my little angel. You need more information to say that premmie Moms are not speaking for their babies. I invite you to visit a NICU and ask any mother if they will resucitate their babies , the answer is YES!!

10:39 PM  

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