The following post was written by a NICU nurse, who blogs anonymously at Reality Rounds.
And, as expected, the author received nasty comments, which prompted this post.Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?
Posted by realityrounds on September 15, 2009
No, it is not. Let me explain. There is an inflammatory article published in the UK Mail Online; Ms. Capewell, a 23 year old mom is claiming English doctors let her 21 5/7 week infant die only because they were following national perinatal guidelines. If only he was born at 22 weeks, she insists, they would have tried everything to save him and admitted him to the Neonatal Intensive Care Unit (NICU). Ms. Capewell, who has had five miscarriages, said the guidelines had robbed her son of a chance of life. She said: “When he was born, he put out his arms and legs and pushed himself over.” The article mentions the 2006 case in the United States were a 21 6/7 week infant, Amillia Taylor, survived after doctors mistakenly resuscitated her, thinking she was actually 22 6/7 weeks gestation. The infant is now two years old and living with her family in Florida. Ms. Capewell states, ‘Thousands of women have experienced this. The doctors say the babies won’t survive but how do they know if they are not giving them a chance?” Following her experience, Ms. Capewell has set up a web page Justice for Jayden urging a change in the British legislation:
The website states:
I had a little baby boy called Jayden on 3rd of October 2008. Sadly I had gone into labour too soon and he was born just halfway through my pregnancy. When I went into labour I was told he would be born dead, disabled and his skin would most likely be peeling off, in actual fact he was perfect. As you can see from his pic he was born alive, he was responsive and lived without help for nearly 2 hours. ReguardleJss of this doctors refused to come and see him let alone consider helping him. This is down to government legislation stating that babies born before 22 weeks are not viable and are not to be helped. Now I’m asking for your help in changing legislation so other families don’t have to suffer unnessisarily.
My heart goes out to this mom who lost her infant and suffered multiple miscarriages. I can’t imagine the pain she must have felt when she lost her child. As a NICU nurse I must disagree with her on her assumptions of care for an infant born with such extreme prematurity. The doctors were just in their actions. It would have been an extreme injustice to Jayden to attempt to resuscitate one so premature. There is a term in medical ethics called Benevolent Injustice. Below is an abstract of an article written by Brenda Barnum, BSN, RN, for Advances in Neonatal Care, that talks about this concept:
There is a little-recognized cohort of NICU patients whose outcomes are the result of a benevolent injustice in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent, and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatology is an unpredictable process and one that is never intended to harm, but carries with it the potential of devastating consequences, thus creating a benevolent injustice.
From reading the UK Mail Online article, and more importantly reading the over 600 comments on this topic, it has made me painfully aware of the ignorance, naivete, and anger the public perception is of caring for infant’s at the edge of viability. Nowhere in the world, including the United States( which arguably had the most advanced technologies when it comes to NICU care), is it routine to resuscitate infants below 23 weeks gestation. In the United States, guidelines for initiating resuscitation vary from 23-24 weeks, and 450 to 500 grams. These guidelines vary by state. Contrary to what Ms. Capewells web page states, it is not “government legislation” that dictates whether an infant born before 22 (really 23 weeks) will be resuscitated and admitted to the NICU. It is the physicians and staff at the delivery. If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.
Infants born at 22-23 weeks gestation have a 1-10% chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95% will suffer profound neurodevelopmental impairment NICHD/NIH. By profound neurodevelopmental impairment, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of being unable to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, never run, etc.
I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.
Ms. Capewell claims her 21 6/7 week preemie was able to “push himself over,” and was “born perfect.” An infant born this prematurely does not have the musculature to expand their chest wall in order to breathe, let alone “push” themselves over. Jayden may have been “born perfect” for a fetus, not for a viable neonate. His eyes were still fused and his skin was gelatonous. He was born too early. We do not have the technologies to save an infant as young as Jayden. Trying to save him would be an experiment in futility. An experiment on an actual human life.
What really struck me most in the UK Mail Online story, was the comments left by readers. Many of them were Americans. They tried to twist this story as a fight against health care reform and that not saving a 21 weeker was rationing care. I will not go into politics here. I will say that comparing not saving a 21 week fetus to rationing health care is a ludicrous argument. It has nothing to do with trying to save money. It has everything to do with humanity, and morality, and justice.
RR
**********
I wrote a controversial post about resuscitating infants at the edge of viability……and now, I am paying the price for it. Being a NICU nurse is hard. You could probably tell from many of my posts that caring for infants, especially those with unknown outcomes and prognoses, can be an ethically and emotionally draining experience.
I love my job. I love saving the lives of neonates. I love the skill it takes to care for the most critical of patients. I love being a part of groundbreaking treatments that impact the lives of infants. I love nurturing the tiniest of human lives to slowly grow and blossom and thrive due to my expert care and touch.
Yet to those who do not know, who can not possibly understand, I am nothing but a baby killer.
Because I, with my many years of experience caring for the extremely premature, do not believe that extraordinary measures should be taken to resuscitate infant’s below 23 weeks gestation, I am labeled a heartless baby killer by the anonymous punditry of the internet bloggers.
It is disheartening to think that there are people out there who believe NICU nurses ,who do not advocate that every premature baby be resuscitated no matter the gestational age, are inhumane, insensitive bureaucrats who only think about the reimbursement of a bed space.
For us NICU nurses on the ground, this is a disgusting load of crap to have to hear. Below are some comments left on various blogs and threads regarding my post and how I felt about resuscitating infants at the edge of viability:
“Perhaps we should ask the opinions of some people who were once babies who were preemies and survived and see what they think about the whole business.
I have a feeling they will tell you they don’t remember a thing. And if they do, I am willing to bet they are glad they went through it.
It is all a ploy. Playing on peoples’ fears of pain and suffering to, as Scrooge said, “decrease the surplus population.
I am scared for the future.”“It sounds to me as if some of you are looking for an excuse not to spend the time, effort and expense on children who “probably won’t make it anyway”. I don’t believe it’s about compassion at all. I think it’s about inconvenience and money.”
“This is just disgusting….he was moving, breathing, and those little bastard doctors did nothing? They should all go to prison for murder and assault on the mom!”
“Some, no, MOST families want to try, and YES we know preemies need a lot of care, at first. So, you and the NICU nurse say set them aside and let them die. Cruel and unethical?Sorry but your extravagant links show the exception and NOT the rule. YOU are cruel and unethical to deny care to these little ones.”
“Sorry it means more work for the doctors and nurses but this is Life at its most innocent and helpless and deserves a chance. We defib flat liners over and over, we try and save life, not set it aside to wither away and die.”
I have dedicated my life’s work to the care of infants. I have invested blood, sweat and tears in the care of infants, including those at the limits of viability. I , like all NICU nurses, have real, hands-on experience of caring for these micro-preemies. We know what caring for these babies entails, and what the outcomes will most likely be. We deserve a voice.Because the majority of NICU nurses do not agree with the concept of resuscitating any infant born alive, no matter what the gestational age, this does not make us heartless baby killers. It makes us realists. It makes us compassionate. It makes us heroes.
RR
********
Thanks to Kevin MD for posting it on his blog.
65 comments:
You couldn't pay me enough to be a NICU nurse, but I thank god other people do those jobs. I'm very sorry you've received such hate filled and ill informed responses.
I don't really know what to say about your original post. I wouldn't advocate for my own child to be resuscitated at such an early gestation based on my own experiences with my 26 weeker and conversations with her NICU doctors and nurses.
Wow, but I can't say that I'm surprised . . . I'm only 20 weeks pregnant right now, and we've just learned that my cervical length isn't looking so hot. Hopefully we'll make it further than I think, but there is no way I would want this baby resuscitated so early. After watching what our 31 weeker went through in the NICU, I can't fathom the work it would require to keep a 22 weeker alive. It really does seem cruel to me.
Thanks for this Stacey. I must say, I am very close in my decision to quit blogging. It is just too painful for me. I admire you for being so strong. But for me, a nurse who really has dedicated my adult life to saving babies, and then being called a selfish "baby killer" is too much for me. My skin is very thin. Who am I helping by speaking the reality? It seems I am hurting more people than helping. Please contact me to discus further.
I know it must be so hard. Thank you for what you do as a NICU nurse.
I can see your points completely. But as a Mom to my only son, born weighing 1.4 pounds, all I can say is that to that one Mom and that one life saved, it may be worth it to them, even if saved below the age of viability as we see it today.
Dear Reality Rounds,
Regarding your comment: "Who am I helping by speaking the reality? It seems I am hurting more people than helping."
I once read a post on inspire.com from someone who said that their child was a 21-weeker. He is now in high school or college. I think that the poster was from Canada. Her child's success illustrates that not everything comes in neat and tidy packages. What may be OK for one baby may not be OK for the next.
If 1 child in a 1000 could survive successfully after being born at 21 weeks, would that child's life be worth the 999 prolonged and painful deaths and/or survivals with severe disabilities than could follow?
These issues are really tough. And I think that it is important that people like you present your perspectives to inform debates about prematurity.
Like Peach, I too am the mother of a child born under 1 lb 4 ozs (570 grams). Our son had a rough NICU stay, but not as rough as some. He was born at 25 weeks. He is 2 years old now and doing very well. Much better than the projections based on models for his gestational age, weight, sex, etc. would suggest. We are very fortunate. NIH models gave him a 14-23% chance of being "normal" (depending on whether I considered myself having been on steroids before his birth; they were given 1/2 hour before his birth, so I'm not convinced that he got much benefit from them). Although he is doing splendidly, we are aware that many issue crop up when preemies hit elementary school. From where we sit, we are especially thankful that he was a couple paper clips in weight over the threshold at our hospital (they do not save under 500 grams).
Best wishes.
I had a 25 weeker and he died after a long fight in the NICU. On reflection, as much as still love him, we made the right call discontinuing her care. We may really want our babies to live and be saved by technology but do we have the right to make that call. I'm sorry that you received such hateful nasty responses from readers. I truly wonder how many of them have suffered the pain of watching a baby fight the NICU fight and have to make the call to let nature take its course. I've since gone on to have a 34 weeker and there is absolutely no comparison that 11 extra weeks in the womb offers between a small (475g) baby on the edge of viability and an almost 3kg baby who really is ready to go. NICU nurses are some of the most compassionate people I've ever met.
These questions are ones I wish parents never had to face- if only there were no babies born at 21 weeks and every baby was born happy and healthy!
Everyone hears the miracle stories and everyone wants that miracle for their child. I can understand that. It must be devistating for parents to be told there is nothing they can do at ANY age/gestation of baby. It must be hard to be told, "We can help them BUT here are the risks and possible outcomes..." Everyone can say, "I would do this" but what would you REALLY say when the situation is RIGHTTHERE in front of you?
Do I understand why some parents would want their 21-23 week child helped? Yes. Yes, I completely understand. What would I do? I know what I think I would do, but if we are ever actually there, I don't know WHAT I would do, kwim?
My cousin is a Level 3 NICU PA. She has strength I will never have to do what she does day in and day out. She is one of our heros because it is people like her who helped me son.
Reality Rounds- For what it's worth, I have a school age 680gram micropreemie who is in elementary school. Her entire early childhood was like one long intervention, but there was a catch-up by 2 and no long-term effects present. (As in high marks, good friends, normal range height/weight etc. Even no glasses....).
Please think of the other ones who go home and you never hear about. There can be miracle stories, too.
To Reality Rounds,
Don't be discouraged. I have been called the same names you have for speaking what I know to be the truth. I am the mother of a severely and multiply impaired preemie, now 34 years old, whom I care for at home.
With the current health care debate in our country and all the wing-nut rhetoric ("death panels," "pulling the plug on grandma," etc.) I would not expect civil conversation on this, or related, topics for the time being. Too many vested interests being (potentially) skewered.
But this too shall pass.
In the meantime, stay strong!
Your preemie was due to listeria. His issues stem from the disease. Be fair.
Most preemies born before 30 weeks are born prematurely due to prenatal infection -- and listeria is not necessarily worse than the other organisms that can cause preterm birth. Preeclampsia brings its special risks. Prematurity in and of itself the most important risk, and the earlier the birth, the worse the risk.
My son was born at 27-29 weeks. But his degree of prematurity or its "cause" is not the issue. It is the resulting disability -- which has been very hard on him and on us.
The idea that prenatal listeria makes a preemie uniquely vulnerable (especially when we are talking about micropreemies (<26 weeks) and especially when we are talking about a 21 week gestation, isn't really an issue here.
I know children who have been totally normal after a (near term) prenatal infection with listeria. However, I know of *no* suriving, even close-to-normal, 21-weeker -- no matter what "caused" the prematurity.
This whole story about the 21-weeker (rolling over on his own, etc.) sppears to be a quasi-fantasy that I suspect is being pushed by those with a vested interest in maintaining the current health care system in the US. These people, who are spending a huge amount of money on disinformation, have produced other false info from the UK purporting to show the "horrors" of governement health care plans.
I have enjoyed the truth speakers since entering the preemie world and feel myself doubting others when they say my 21 weeker is just fine. Or 20 years ago I was a 20 weeker. Really, cause then why are they just barely able to save 24 weekers. Yes there are miracle stories out there. Those who saved my child warned us of the extreme prematuirity lasting effects. We thought we could live up to those effects.
Sadly I have falled short. His abilites exceeded those of the NICU and he is far better off than he "should" be but as a mother I have fallen short. It is harder than I thought it would be to be a mom to such a special kid. Challenging is an understatement. I LOVE my child. I would have wanted someone to save him. But I put him trhough millions of heel sticks, ABS and hurtful procedures to save his life. And I have a "half miralce" and we deal with a disablity in our face Daily.
Without people who tell the truth and not paint pretty pictures of lies and prettied up packages I would think I had failed. instead I get to read of someone who feels like me, feels ripped off by prematurity and feels the need to share that it isn't what it sounds like it is.......
The truth hurts. but it also sets you free
http://www.msnbc.msn.com/id/33182114/ns/health-kids_and_parenting/
I'm not sure what I find more disturbing in Helen's previous post-the sad statistics in the preemie article or the subsequent article detailing the alarming increase in autism rates among children. Upon reflection, I don't see how a 22-24 weeker can survive without considerable impairment but I really find the 1 in 100 children with autism truly frightening.
Melanie
To Melanie,
Sadly, the autism/prematurity stories are connected.
15 - 25% of preemies (born at less than 30 weeks gestation) test positive on early screening exams for autism.
I can't help thinking prematurity/steroids (pre-and- post-natal) are related to the rise of autism since the 1980s.
Even with babies not born prematurely, if there is a risk factor in the pregnancy,the mother-to-be is often treated prenatally with steroids just in case the child might be born prematurely. No one is even keeping a record of how many babies (fullterm) are steroid-exposed.
Steroids are a huge risk factor for brain damage (even one prenatal dose of two injections destroys the cerebellum in lab animals) and these drugs now thought to cause/contribute to brain damage/autism in humans. On top of prematurity, steroids are a recipe for disaster.
***
To Preemie Miracle:
It is so important that those of us with disabled preemies (and, sadly, we are in the majority) speak honestly with each other and support each other in our struggles.
I am totally with you -- the truth is liberating. And you have nothing to feel guilty about!
What parents of disabled children have to cope with is almost beyond human endurance.
What our children have to suffer is also often beyond human endurance. We just do the best we can under very difficult circumstances.
Stay strong!
Helen
I had also read the MSNBC article mentioned by Helen prior to checking in with Stacy's blog. I found it extremely salient to various edge of viability discussions that I've been involved with lately. I think this kind of information is crucial for parents to make the kind of decisions they would want to make as loving involved parents. I can't help but feel that many parents who sat helplessly by while their baby faced excruciatingly painful intervention after intervention may have rather used that brief time together to hold their infant, express their loving parental feelings and allow the child to die without the (ultimately unsuccessful) indignities of a full court press. Obviously, parents of children old enough to be "saved" by extreme medical intervention would not have this option given the legal-ethical quagmire that exists in most hospitals, but if we'd just be honest with at least *this* edge-of-viability population, they could make a different decision if they had the correct information.
Another item in the news relevant to many parents of prematurely-born children is yesterday's Nobel Prize awarded to Dr. Elizabeth Blackburn at UCSF.
Dr. Blackburn conducts research into telomeres -- the protective ends of the chromosomes-- which she discovered.
Every time our chromosomes divide the telomeres get shorter (shortening out lives, in the process). This is especially true for people who live with excruciating levels of stress.
Dr. Blackburn and her co-workers are currently looking into the situation of mothers taking care of children with cerebral palsy and related disabilities.
They have found that the stress of such caregiving takes between 10 to 20 years off the normal lifespan of the mother by shredding these protective telomeres and leaving the mother vulnerable to lethal diseases.
In other words caring for a disabled child can take one to two decades off a parent's life.
Like Anonymous 3:52, my DH and I are at peace with the decision to have discontinued extreme measures with my (28-week) firstborn. I was just speaking of resusitation issues with my mom today for some reason or another-- she likened it to some of the horrible comments she received upon refusing resusitation for my 86-year old grandmother when she passed: just because you *can* do something, does it mean you *should?* Miracle stories aside, given the best information I have at that moment in time, I'd chose a loving death over a painful "existence" any day.
--About the commenter on the original blog who said adult preemies would say they don't remember a thing: send them the studies on long-term brain damage due to NICU trauma.
To Krysten,
I'm totally with you having "been there" both with my son, and, later, with my mother.
We followed my 86-year-old mother's *fervent* wishes (no resus, no hospital)-- with her wonderful doc's approval and support. She had a good and peaceful death st home, as she wished.
With our son, we didn't have our wishes (and the wishes of most of the medical staff) honored. And our son suffered terribly -- and continues to suffer 34 years later.
The pain of resuscitation and NICU care is so horrendous for preemies that, in and of itself, it causes brain hemorrhage and brain damage.
Be at peace with your decisions.
We wouldn't have wanted done to us what was done to our son. My parents (who were alive and relatively young when their first grandson was born) totally agreed with us.
It is so sad that the agonizing "salvage" of our preemies has become so profitable to hospitals and doctors.
I can't help thinking prematurity/steroids (pre-and- post-natal) are related to the rise of autism since the 1980s.
Even with babies not born prematurely, if there is a risk factor in the pregnancy,the mother-to-be is often treated prenatally with steroids just in case the child might be born prematurely. No one is even keeping a record of how many babies (fullterm) are steroid-exposed.
Steroids are a huge risk factor for brain damage (even one prenatal dose of two injections destroys the cerebellum in lab animals) and these drugs now thought to cause/contribute to brain damage/autism in humans. On top of prematurity, steroids are a recipe for disaster.
******
Can you provide links to this research? I'd be curious to see it. Thanks!!
I have extreme respect for NICU nurses and doctors they have a job that I know as a mother to be one of the hardest careers out there. I am the mom to 4 preemies. My first pregnancy ended with my twins being born at 23 1/2 weeks. Weighing it at 1 lbs 6 oz and 1 lbs 5 oz. I watched the nurses do everything that they could but despite there efforts I had to make a choice to remove life support from my first born daughter. It was the one decision in life I never wish any mother to have to make. I was 18 at the time and had no idea that it was going to be like that. Her twin sister spent 10 weeks in the NICU and another 9 weeks in a step down unit and we were in and out our first year and that was 17 years ago. I got very lucky and she came out of that situation with minimal issues in comparison to what I have seen other parents deal with. Luckily for my my next 2 girls were born at 34 weeks weighing 4 lbs 10 oz (now 16 )and 35 weeks weighing 7 lbs (now 3) and we didn't have to see the inside of the NICU unit. I know that every child is different and I am not sure that I could ever do the NICU again based on what I have seen. But I would never put down a nurse and what they have to say as they see it everyday but i know as a mother that when the doctors asked me if I wanted them to go to heroic measures to save them and I said yes, but I also didn't know what that truly entailed and to be honest I know that I wouldn't do it again if I was put in that position. So hats off to all the work in the NICU as you are wonderful people with wonderful caring hearts.
Kelly,
When you say that your surviving twin thankfully escaped any major disabilities, would you be willing to elaborate on her "minimal" issues? As the mother of 27 week old twins who are about to turn 2, I'm always curious about outcomes.
Thanks,
Melanie
To Anonymous 10/07 9:31 PM who wants the steroid references,
You bet. I'll share it all gladly.
I have written and published articles on the topic, and have referenced these article previously on this blog.
Since then, I have delivered a presentation on steroids and preemies for a molecular biology class at UC Berkeley. My professor, who also does research on steroids, (sex hormones, in his case, and prenatal development), was appalled to learn that fetuses and preemies are exposed to any sort of steroids during the time their brains (and other organs) are in critical stages of development. Most neuroscientists share his horror.
The evidence is comprehensive and compelling, and it will take some time to get it all out, but I will do my best. Parents and the public need to know this!
To be continued, ASAP...
To begin the steroid discussion, here is an excerpt from the Wikipedia entry on "preterm birth", from the section "glucocorticoids" (i.e., steroids).
It gives a brief overview of some of the recent concerns.
Given what is currently known, a single prenatal course of steroids is still recommended because it prevents or ameliorates some of the most dangerous early diseases of prematurity. However, animal experiments show that a similar small course of steroids prenatally badly damages the fetal cerebellum. Damage to the cerebellum is also currently thought to be a critical element in the deveopment of cognitive deficits and autism.
From Wikipedia:
****
Despite being used for over 50 years to treat respiratory distress syndrome, glucocorticosteroid therapy is still controversial... recent clinical research has shown that the postnatal administration of dexamethasone can lead to permanent neuromotor and cognitive deficits.[56] This has led to a drastic reduction in the postnatal use of glucocorticosteroids in prematurely born infants. In addition, a recent large scale study has found that a second “rescue” dose of betamethasone prenatally does not improve preterm birth outcomes and leads to decreased weight, length, and head circumference.[57] Finally, while glucocorticosteroid exposure in the adult is considered safe, recent animal research has shown that a single exposure to these same drugs during brain development causes rapid brain degeneration.[58][59] Despite these concerns, there is a consensus that the benefits of a single regimen of prenatal glucocorticosteroids vastly outweigh the potential risks.[60]
56. Yeh TF, Lin YJ, Lin HC, et al. (2004). "Outcomes at school age after postnatal dexamethasone therapy for lung disease of prematurity". New England Journal of Medicine 350: 1304–1313. doi:10.1056/NEJMoa032089. PMID 15044641
57. Murphy KE, Hannah ME, Willan AR, et al. (2008). "Multiple courses of antenatal corticosteroids for preterm birth (MACS): a randomised controlled trial". The Lancet 372: 2143–2151. doi:10.1016/S0140-6736(08)61929-7. PMID 19101390.
58. Noguchi KK, Walls KC, Wozniak DF, et al. (2008). "Acute neonatal glucocorticoid exposure produces selective and rapid cerebellar neural progenitor cell apoptotic death". Cell Death & Differentiation 15: 1582–1592. doi:10.1038/cdd.2008.97. PMID 18600230
[59]http://www.usatoday.com/printedition/life/20081118/bl_bottomstrip18.art.htm
60. http://consensus.nih.gov/1994/1994AntenatalSteroidPerinatal095html.htm
You may want to check out the reference from USA Today before checking out the other references.
If anyone would like to see the full texts of these studies please contact me at Helen1144@aol.com
More to come on the connection between cerebellar damage and autism in preemies, and, perhaps, in some fullterm infants treated with prenatal steroids.
For some early steroid references (from the 1970s through 2000) here is a draft of the paper I published in the journal _Birth_ in 2001. Because of the length, I may have to post this in several parts. Here is part 1:
Preemies on Steroids: A New Iatrogenic Disaster?
At the Hot Topics in Neonatology conference last December, Dr. Barbara Schmidt referred to the year 2000 as “Annum Terribilis” for her profession.(1) Large studies from the NICHD (2) in the US and the EPICure group3 in the UK had revealed unexpectedly grim outcome statistics for extremely low birthweight and short gestation babies, showing a 50% rate of disability serious enough to be diagnosed by two to three years of age. Because follow up at such early ages reveals only a fraction of the impairments diagnosed by mid to late childhood,(4)the eventual toll in disability promises to be considerably higher.(3)
Premature birth, it was also reported, permanently disorganizes and reduces the size of the brain, adversely affecting cognition and behavior.(5,6) The more premature the infant, the smaller and more abnormal the brain.(5) Adult cardiovascular disease, underdeveloped kidneys and diabetes were further linked to low birth weight. (7) It had become increasingly apparent that improved survival among extremely preterm infants was producing greater numbers of children with permanent health impairments and handicaps.(8) Further, some of this disability was linked to iatrogenic causes,(2) a result of the continued haphazard use of poorly evaluated therapies in perinatal and neonatal care. (9,10)
Part 2:
Improved survival rates among extremely premature infants have been credited in part to the use of steroid drugs (11,12) currently administered to nearly half of mothers before extremely preterm delivery and to half of all extremely preterm infants after birth. (13)
In perhaps the most disturbing revelation of the year 2000, steroids were implicated as “neurotoxic” substances (2) that, in research with preterm neonates, further reduce the size of the premature brain (14) and increase rates of cerebral palsy,
(15,16,17) cognitive deficits, (2,15) and severe retinopathy.
(18,19)
Two large randomized controlled trials of postnatal steroids were recently halted prematurely because of serious short term complications such as intestinal perforations, growth retardation, periventricular leukomalalcia, hyperglycemia, hypertension, and infection. (20,21) In addition, animal and human studies of steroids in the perinatal and neonatal period have suggested that steroids contribute to long-term cardiovascular disease, (22, 23) immune system disorders and autoimmune diseases such as multiple sclerosis, (24) renal calcification, (25) abnormal lung development,(26) and neurological and behavioral deficits. (27,28)
Prenatal steroids -- used in single two-injection doses -- have been accepted as safe and effective in reducing neonatal mortality and morbidity, however, many obstetricians treat high risk pregnant women with multiple courses of steroids (29) on the theory that if a little bit is good, more is better. New research now implicates multiple doses of prenatal steroids with impaired head growth,(30) impaired brain development and behavior problems; (31,32) increased mortality and lung disease; (26) gastroesophageal reflux; (33)and severe retinopathy.(34)
Part 3:
A consensus statement from NIH, issued in August 2000, now discourages their use.(29)
Postnatal steroids had become widespread in neonatal care by the 1990s having been introduced into the nursery without properly conducted clinical trials for safety and efficacy(10) and despite warnings from researchers (beginning in the 1970s) of serious potential dangers.(35,36,37)
Steroids were accepted enthusiastically because they produced dramatic short term improvements in the respiratory status of premature infants (long term benefits were less apparent).
(38)
Dr. William Silverman, who has written extensively on previous iatrogenic mishaps in neonatology, (39,40) estimates that tens of thousands of infants have now been treated with these drugs, in what he suspects will be “one of the worst iatrogenic disasters in modern history, exceeded only by the DES fiasco.” (41)
Neonatologist Alan Jobe recently criticized his profession’s embrace of poorly tested and potentially dangerous steroid treatment by quoting Tom Lehrer’s bitter lyrics on the misuse of scientific technology: “Once the rockets are up, who cares where they come down? That’s not my department says Wernher von Braun.”(38)
Dr. Jobe further writes: “Adverse neurodevelopmental outcomes [from the use of steroids] no doubt result from the effects of these potent agents on the developing nervous system and should come as no surprise.” (38)
Except, of course, to parents and the public.
As the rockets began landing last year, the explosions occurred out of public and parental sight. Disturbing studies and commentaries on steroids were presented (quietly) in neonatal journals and conferences. However the media, for the most part, seems to have missed this iatrogenic disaster-in-the-making. Perhaps there have simply been no press releases from the medical journals and researchers. As neonatologist Mildred Stahlman once remarked, “We have allowed the media to publicize our successes widely, and have minimized our failures to the public”(42)
Part 4:
I participate in several Internet listservs for parents of premature infants. The parents with whom I correspond uniformly report that they were never informed of the known and suspected risks of multiple prenatal or postnatal steroids. A few parents say they were told the drugs might “slow growth,” but complications involving the brain, eyes and other organs and systems were never mentioned. When I give parents the studies and commentaries referenced in this article they become angry that they were never given this information, though much of it has been available to neonatologists for decades.
They are devastated to discover that many of the illnesses and disabilities their children now suffer may have resulted from, or been complicated by, the use of steroids. In addition, high risk pregnant women report they continue to be treated with multiple doses of antenatal steroids without being informed of the risks.
The steroid issue is being discussed by physicians on the Internet, as well. A recent poll 43 of 259 neonatologists conducted by Dr. Richard Scott Taylor revealed that steroids are still commonly used and that neonatologists’ practices vary widely concerning when and how they use these drugs. Less than 10% of the respondents reported involving parents in formal informed consent procedures for the use of steroids. Dr. Taylor comments: “It…does not make sense to me that as physicians, we get informed consent for standard procedures with clear risk benefit balance such as immunizations and blood transfusions yet are not necessarily expected to get consent for PNCS [post-natal corticosteroids] where there is no standard for use, and significant potential for harm….But perhaps we should. “
I strongly agree! Given the current widespread use of poorly evaluated therapies in neonatal care and the dismal outcomes (with and without steroids) I must also agree with neonatologist Jeffrey Maisels that care for very low birthweight infants is currently “a vast and uncontrolled experiment undertaken without informed consent and with possibly undesirable results.”
(44)
The time has come for parents -- who, along with their children, must live with the outcomes -- and for the public -- who ultimately pay for this care and its consequences -- to be honestly informed about the “experimental” nature of neonatal treatment for very preterm infants and its unfortunate results. It is also time for parents and the public to demand that not only steroids but all poorly evaluated neonatal treatments be used only in the context of formal clinical trials. Furthermore, the time has come, in the wake of this “annum terribilis” to assert the right of parents to give, or to withhold, their fully informed consent to the experimental, arduous, and dangerous treatment of their extremely premature infants.(9)
Part 5:
References
1.Schmidt B. Prevention of IVH and BPD: International Randomized Placebo-Controlled Trial of Indomethacin Prophylaxis in Preterm Infants (TIPP). Presented at Hot Topics in Neonatology, December 5, 2000, Washington, DC.
2. Vohr BR, Wright LL, Dusick AM,.et al. Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Neonatal Research Network, 1993-1994, Pediatrics 2000;105:1216-26.
3.Wood NS, Marlow N, Costeloe K, et al. Neurologic and developmental disability after extremely preterm birth. N Engl J Med 2000;343:378-84.
4.McGrath MM, Sullivan MC, Lester BM, and Oh W. “Longitudinal neurological follow-up in neonatal intensive care unit survivors with various neonatal morbidities. Pediatrics 2000;106:1397-1405.
5.Peterson BS, Vohr B, Staib, LH et al. Regional brain volume abnormalities and long-term cognitive outcome in preterm infants. JAMA 2000;284:1939-1947.
6.Hack M, Taylor HG. Perinatal brain injury in preterm infants and later neurobehavioral function. JAMA 2000;284:1973-1974.
7.Eriksson J, Forsen T, Tuomilehto J, et al. Fetal and childhood growth and hypertension in adult life. Hypertension 2000;36 (5):790.
8.Jobe A. Overview for prevention of IVH –Why are <1 kg infants normal? Presented at Hot Topics in Neonatology December 5, 2000, Washington, D.C.
9.Harrison H. The principles for family-centered neonatal care. Pediatrics 1993;92:643-650.
10. Finer NN, Craft A, Vaucher YE et al. Postnatal steroids: Short-term gain, long-term pain? J Pediatr 2000;137:9-13.
11. Lorenz JM. Survival of the extremely preterm infant in North American in the 1990s. Clin Perinatol 2000;27:255-262.
12. Halliday HL. Clinical trials of postnatal corticosteroids: Inhaled and systemic. Biol Neonate 1999;76:29-40.
13. Vermont Oxford Network 1998 Database Summary. Burlington, Vermont: Vermont Oxford Network;1999.
14. Murphy BP, Inder TE, Huppi PS, et al. Quantitative brain growth following treatment with dexamethasone for neonatal chronic lung disease [abstract]. Pediatr Res 2000;47:419A.
15. Shinwell ES, Karplus M, Reich D, et al. Early postnatal dexamethsone treatment and increased incidence of cerebral palsy. Arch Dis Child Fetal and Neonatal Ed 2000;83:F177-F181.
16. Yeh TF, Yin YJ, Huang CC, et al. Early dexamethasone therapy in preterm infants: a follow-up study. Pediatrics 1998;101:E71-78.
17. O’Shea T, Kothadia J, Klinepeter K, et al. Randomized placebo-controlled trial of a 42-day tapering course of dexamethasone to reduce the duration of ventilator dependency in very low birth weight infants: outcome of study participants at 1-year adjusted age. Pediatrics 1999;104:15-21.
18. Vohr BR, Phelps D, Wright LL, et al. Effects of neonatal interventions on retinopathy of prematurity (ROP) in extremely low birth weight (ELBW) survivors <1000 grams [abstract]. Pediatr Res 2000;47:327-A
19. Halliday HL, Ehrenkranz RA Delayed (>3weeks) postnatal corticosteroids for chronic lung disease in preterm infants. Cochrane Database Syst Rev 2000:CD001145.
20. Stark AR, Carlo W, Bauer C, et al. Complications of early steroid therapy in a randomized controlled trial [abstract]. Pediatrics Supplement 1999;104:739-A.
Part 6:
21. Soll RF for the Vermont Oxford Network Steroid Study Group. Early postnatal dexamethasone therapy for the prevention of chronic lung disease [abstract]. Pediatr Res 1999;45:226A.
22. Ortiz LA, Quan A, Weinberg A, et al. Prenatal dexamethasone causes reduced glomerular number and hypertension in adult rats [abstract]. Pediatr Res 200;47:450-A.
23. Doyle LW. Antenatal corticosteroid therapy and blood pressure at 14 years of age in preterm children. Clin Sci 2000;98:137-142.
24. Bakker JM, Kavelaars A, Kampuis PJ et al. Neonatal dexamethasone treatment increases susceptibility to experimental autoimmune disease in adults. J Immunol 2000;165:5932-7.
25. Kamisuka MD, Williams MA, Nyberg DA et al. Renal calicification: A complication of dexamethasone therapy in preterm infants with bronchopulmonary dysplasia. J Perinatol 1995;15:359-63.
26. Banks BA, Merrill JD, Cnaan A, et al. Multiple courses of antenatal corticosteroids (ANCS): Association with increased mortality and early severe lung disease (ESLD) in preterm neonates. Pediatrics 1999;104 (3) part 3:739.
27. Kamphuis PJGH, Coiset G, Bakker JM, et al. Neonatal treatment with dexamethasone selectively reduces pituitary-adrenal responsiveness of rats to novelty stress in adulthood [abstract]. Pediatr Res 2000;47:71-A.
28. Benesova O, Pavlik A. Perinatal treatment with glucocorticoids and the risk of maldevelopment of the brain. Neuropharmacology 1989;28:89-97.
29. Antenatal corticosteroids revisited: Repeat courses. NIH Consens Statement 2000 August 17-18;17:1-10.
30. French NP, Hagan R, Evans SF, et al. Repeated antenatal corticosteroids: Size at birth and subsequent development. Am J Obstet Gynecol 1999;180:114-21.
31. French NP, Hagan R, Evans S, et al. Repeated antenatal corticosteroids (CS): Behavior outcomes in a regional population of very preterm (VP, <33w) infants. [abstract] Pediatr Res 1998:43:214-A.
32. Kay HH, Bird IM, Coe CL, et al. Antenatal steroid treatment and adverse fetal effects: What is the evidence? J Soc Gynecol Investig 2000;7:269-278.
33. Bhandari V, Brodsky NL. Repetitive doses of antenatal steroids (ANS) are associated with increased gastroesophageal reflux (GER) [abstract]. Pediatr Res 1999;45:186-A.
34. del Moral T, Claure S, VanBuskirk S et al. Antenatal steroids and incidence of ROP in ELBW infants [abstract]. Pediatr Res 2000;47:395-A.
35. Taeusch HW. Glucocorticoid prophylaxis for respiratory distress syndrome: A review of potential toxicity. J Pediatr 1975:87:617-623.
36. Weichsel ME. The therapeutic use of glucocorticoid hormones in the neonatal period: Potential neurological hazards. Ann Neurol 1977;2:364-366.
37. Frank L. The use of dexamethasone in premature infants at risk for bronchopulmonary dysplasia or who already have developed chronic lung disease: A cautionary note [letter]. Pediatrics 1991;88:413-414.
38. Jobe A. Glucocorticoids in perinatal care: Misguided rockets? J Pediatr 2000;137:1-3.
39. Silverman WA. Where’s the Evidence? Debates in Modern Medicine. New York: Oxford University Press, 1998.
40. Silverman WA. Retrolental Fibroplasia: A Modern Parable. New York: Grune & Stratton, 1980.
41. Silverman WA. Personal communication. November 7, 2000.
42. Stahlman MT. Ethical issues in the nursery: Priorities versus limits. J Pediatr 1990;116:167-170.
43. Taylor RS. Postnatal steroid use among neonatologists: Survey results December 2000. http://www.cheo.on.ca/rtaylor/PNSteroid-r.html
44. Maisels J. as quoted by S J Brown. Neonatal intensive care: Life at what cost? Pediatric News January 1993:1,26.
Here is the abstract from the study showing that a single prenatal dose of steroids causes signifiacnt brain damage in laboratory animals (and, almost certainly, in humans as well):
From Cell Death Differ. 2008 Oct;15(10):1582-92. Epub 2 July 4 2008.
"Acute neonatal glucocorticoid exposure produces selective and rapid cerebellar neural progenitor cell apoptotic death."
Noguchi KK, Walls KC, Wozniak DF, Olney JW, Roth KA, Farber NB.
Department of Psychiatry, Washington University School of Medicine, 660 South Euclid Avenue, St Louis, MO 63110-1093, USA.
There has been a growing controversy regarding the continued use of glucocorticoid therapy to treat respiratory dysfunction associated with prematurity, as mounting clinical evidence has shown neonatal exposure produces permanent neuromotor and cognitive deficits. Here we report that, during a selective neonatal window of vulnerability, a single glucocorticoid injection in the mouse produces rapid and selective apoptotic cell death of the proliferating neural progenitor cells in the cerebellar external granule layer and permanent reductions in neuronal cell counts of their progeny, the cerebellar internal granule layer neurons. Our estimates suggest that this mouse window of vulnerability would correspond in the human to a period extending from approximately 20 weeks gestation to 6.5 weeks after birth. This death pathway is critically regulated by the proapoptotic Bcl-2 family member Puma and is independent of p53 expression. These rodent data indicate that there exists a previously unknown window of vulnerability during which a single glucocorticoid exposure at clinically relevant doses can produce neural progenitor cell apoptosis and permanent cerebellar pathology that may be responsible for some of the iatrogenically induced neurodevelopmental abnormalities seen in children exposed to this drug. This vulnerability may be related to the physiological role of glucocorticoids in regulating programmed cell death in the mammalian cerebellum.
***
Next, I'll give the references linking cerebellar damage in preemies to autism.
The previous references show cerebellar damage/atrophy caused in mammals (in the period of 20 weeks gestation to 6 weeks postnatal) by only one round of steroids.
Damage/atrophy of the cerebellum is, in turn, a major feature both of preterm birth and of autism.
According to one group of researchers -- Limperoupolus et al. (Pediatrics 2007):
"The cerebellum has long been known to play a central role in the coordination of movement. However, more recent studies in adults and older children have suggested an important role for the cerebellum in the development of language, cognitive, and social function...Interestingly, over 90% of neuropathological studies in persons with autism have shown well-defined cerebellar anatomic abnormalities..."
Older individuals who suffer damage to the cerebellum also have shown a "cerebellar cognitive disorder" similar to, or identical to, autism.
And lots of preemies, due to preterm birth per se and/or other complications of prematurity, sustain cerebellar damage and/or atrophy. This damage/atrophy is also related to autism diagnoses among preemies.
(Limperopoulos et al. "Does cerebellar injury in premature infants contribute to the high prevalence of long-term cognitive, learning, and behavioral disability in survivors? Pediatrics 2007; 120:584-593.)
Also see Limperopoulos et al. "Late gestation cerebellar growth is rapid and impeded by premature birth." Pediatrics 2005;115:688-695.
and by the same researchers:
"Impaired tophic interactions between the cerebellum and the cerebrum among preterm infants." Pediatrics 2005;116:844-850.
and
"Positive screening for autism in ex-preterm infants: prevalence and risk factors" Pediatrics 2008;121:758-765.
(showing a 26% incidence of positive autism screening in <30 week preemies at age 2).
Meanwhile cerebellar growth failure in preemies continues to occur and worsen in adolescence and is associated with psych issues. (Parker et al. "Cerebellar growth and behavioral and neuropsychological outcome in preterm adolescents" Brain 2008.)
There are many other references I will get out as soon as time permits, if anyone wants to read more.
I will also be glad to help anyone who wants to see the entire text of these articles (the abstracts should be freely availalbe online). Email me privately (Helen1144@aol.com)with any specific article requests.
I agree fully that all parents of children who are born premature or disabled get the full story about the likely care, pain, work and life that will be needed. I hear complaints from parents who feel that too much negative was given, and those who feel that not enough of the negative was made apparent.
Most parents choose to abort when told their child is likely to have the handicaps that micro preemies tend to have. However, once that fetus is born and is legally a person, the tide seems to change, and an all out effort to preserve life is often the desire of the parents despite any handicaps, and pain on part of the infant. As it should be the parents decision to make when the child is 24 weeks old, so it should be at 21 weeks old. The life saving measures should be the same, for who is to say, that the child is not to have a shot at life when the parents want it despite knowing the issues involved. If the infant is not viable, he will die. If he lives with handicaps, so he does as many micro preemies do.
I think the issue is more that parents are not given the true picture in many NICUs where the ability to save the smallest babies exist, and the doctor are on automatic to do so without involving the parents in the decision. When heroic, painful, disabling efforts are needed, there is a point where parents should have that choice if viability is there, because of gestational age. Sometimes the timeline is wrong.
An interesting video:
http://www.nytimes.com/2009/10/12/health/12fertility.html?em
To Kate K:
"If 1 child in a 1000 could survive successfully after being born at 21 weeks, would that child's life be worth the 999 prolonged and painful deaths and/or survivals with severe disabilities than could follow?"
How is that a judgment that anyone could make? Ask those of the 999 who have the children with severe disabilities.
We're not talking about theory here- we're gambling with human lives, and resuscitation that early is condemning if not all then close, of the neonates born to extremely poor outcomes. Is that justifiable?
To Reality Rounds, I believe you do the public a service by showing them the reality of preemies. It's unfortunate that the reaction from some people is so poor, but they simply don't want to believe the facts and would rather stay ignorant. I can imagine how difficult and hurtful it is for you to deal with their comments. I for one, hope you will continue blogging!
When to ask the 999 parents? When the babe is born and the adrenalin is up to save the child at all costs? 20 years later when the babe is no longer a child, but an adult who has had a life full of painful health issues that have taken much of the parents' time? There are disability groups that advocate saving life at all costs, and parents who are solidly behind that stance. There are parents who are not. There are the handicapped who insist that all life saving measures be given despite prognoses and then there are those who are fighting to be permitted to choose to be let go. A lot who cannot express any opinion at all because they are not capable.
Is it fair that the one child who has parents who insist on resuscitation will live whereas the others will not? Should this decision be one made by parents, medical doctors, by whom?
One thing I believe, is that it should not be made by the nurse.
My own view is that OB-GYNs and, most especially, those who work with assisted reproductive techniques should be telling parents before and throughout pregnancy about outcomes and options.
Schools should offer a major segment of their biology and sex ed courses in discussing fetal development, viability, and, again, the medical possibilities and perils of various medical interventions at various gestational ages.
Finally the media has a huge responsibility to give the information straight, and go well beyond the short-sighted "miracle baby leaves NICU" stories.
No one should come into a preterm birth situation knowing as little as most of us did.
Here is a link to the letters column of today's New York Times in response to their series on assisted reproduction, muliples, and prematurity. They really makes the case that many parents come into this totally uniformed or misinformed.
http://www.nytimes.com/2009/10/14/opinion/l14babies.html?_r=1
"Should this decision be one made by parents, medical doctors, by whom?
One thing I believe, is that it should not be made by the nurse."
Not sure if this was directed at my post, or in general. I just want to make it clear, that the resuscitation decision is made in conjunction with the mother and the doctor (which I thought I clearly stated). Nowhere did I mention nurses making that kind of call. I guess it is because I am a nurse, that it may be assumed by some that I ,and other nurses want to, or do, make resuscitation decisions on periviable infants. I do not, and would never want to be in that kind of position to decide, as a parent, or a medical professional.
Extremely tough...there are no easy answers. A process a parent must be prepared for, although I still think it is nearly impossible to to be fully prepared...the pain, fear, and struggles are pretty unimaginable unless you've lived it.
We couldn't have known it, but our children's outcomes are good based on statistical outcomes they were faced with. Twins, 23 weeks, a boy and a girl, 550 and 560 grams at birth. And saying their outcomes are good is not to say that they walked away unscathed. Certainly not. However, neither needs to live in a medical facility, suffers from seizures, requires a feeding tube, is blind or deaf, or will never crawl or walk, etc. Our son has a mild/moderate form of cerebral palsy...he just began walking independently(!) :)(they just turned three) and of course we are thrilled. There are residual health issues and other things they deal with, don't get me wrong, but they participate in every day life and are not severely impaired. We believe they have a very good quality of life.
We recognize how blessed we are, and although only anecdotal I think it's important to share our experience. We feel extremely blessed to have our children and they are extremely happy and we do not regret our decision to resuscitate at all. We *personally* can't imagine life without our two and Stacy and others who have come to *know* our family, have seen pictures of our twins, and read about them know just how wonderful they are. Perhaps our feelings related to our children has something to do with our understanding and acceptance that we would have children with special needs right from the moment of their birth. But to us their issues are certainly manageable, and we are committed to doing everything we can to keep them happy, loved, and thriving. Sometimes life feels really normal, other times we recognize their differences, but again no more than other parents of children with special needs...there are many of us...preemie and non-preemie parents of children with special needs.
Resuscitation is a difficult issue, but I am thankful we had a choice at 23 weeks. If you met Serena and Edwin I do not believe anyone would argue they would have been better off if they'd never been saved.
This is just our experience and again I share because we are thankful we had a choice and feel extremely blessed even with the preemie-related issues they face.
I do not discount or discredit parents who feel differently about their children's outcomes, and again realize how blessed we are. Again, we are so thankful we were given a choice.
Of interest..just read the segment of what 22-23 weekers could be faced with from the post. He said, without knowing Serena and Edwin, had he had this info at the time of their birth, there is no way he would have chosen resuscitation. And I totally understand where he is coming from, it sounds terrible. It's not our reality, but very well could have been. Sometimes where you stand depends on where you sit...
We have and still continue to talk about what we would do if faced with the decision again...so hard, so painful...
Forgot to write read *to hubby
Dear 23wktwsmommy,
I hope I am not bringing up any bad memories. This was not my intent. (thus the blogging can suck attitude of late). Is it all babies at 22-23 weeks who go through such hell? (and the gestation I am talking about, which maybe not too clear for readers is 22 1/7 weeks to 23 0/7 weeks). I guess nothing is never all or none. Certainly 23 plus weekers do not have very good outcomes. But statistically and realistically, (and I know this is hard to hear), infants younger than 23 0/7 weeks do not do well, and suffer horrible disabilities, and the vast majority eventually die in the NICU. In my 16 years of NICU nursing, I have never had a 22 week infant and below baby survive. It has not happened. Ironically my post (and blog) was meant to mostly be read by medical people, who do not find it very controversial. But I seem to have touched a cord with lay people. I never meant to come off sounding harsh or uncaring, and I hope I do not. What does get to me though, is when I read stories like the "Jayden" one, and supposed experts spread misinformation. For example that it is the standard in the United States to begin resuscitation at 20 weeks gestation. This is false, and of course no one offers references for this. The standard set by the American Academy of Pediatrics is 23 weeks (I am simplifying this, but I can provide references if anyone wants them).
Anyway, I am rambling. The realities of resuscitating periviable babies is heartbreaking and difficult. I wish everyone had healthy babies and these decisions never had to be made....
Reality Rounds...most of us have PTSD, so thinking about my twins birth and what they went through always makes me cry...so no worries, you didn't stir up anything I don't experience every time I think about our NICU days.
The sad truth is that many 23 weekers, even 23.something weekers have outcomes like you mentioned, obviously worse the lower you go. We know we are lucky that S&E are doing as well as they are and yet they are still impacted...clearly impacted health and development wise. But I guess you could say that these outcomes are "acceptable" to us, but how could we have known when we were forced to choose?
At our NICU parental choice begins at 23.1; S&E were born at 3am on 23.5...not very far from our NICUs determination of "not viable."
Choice is a double edged sword...terrible to have to make that choice, but yet I think parents should be given a choice when ethically appropriate. Where we draw the line regarding when they get the choice and when they don't is still unclear to me. Our daughter got down to 14 ounces at one point...I personally can't imagine a baby much smaller possibly surviving.
I used to get really upset about people who didn't believe in resuscitation at 23 weeks. I always pictured our lives..our children. It took awhile to understand that other people have other images of outcomes..their own or people they've come to know. I can appreciate differing opinions and choices much better than I did before. But when I think about people saying that children born before a certain gestation would be better off not saved, (not saying you said that because you didn't), I really want them to meet my two. I have finally come to the realization that I don't have the answers and I don't know how to respond to the viability issue. I don't pretend to know what people should choose.
All I really know is we made the right decision for our family. And I thank NICU nurses and neonatologists for taking such excellent care of S&E and us as parents for that matter. I am thankful I made it to viability, but would not have been angry at the NICU if I hadn't. I accept that there are reasons that there are limits to viability and I believe that our NICU acts in good faith regarding resuscitation.
I completely respect what you do and your honesty. Even while hard to hear, we had many nurses who told us the good, the bad, and the ugly. It is a joy to bring the twins back to the NICU to show them off and we really look forward to the smiles on the nurses' faces when they them. Can't wait to go again soon to show them our son's newly acquired walking skills.
Thank you for what you do!
Here is our experience:
Our son -- whom one commenter considers to be uniquely damaged by listeriosis -- was walking at 18 months corrected. He was reading at age 2.
At age 3, we were told by the head of NICU follow-up, that our son was socially and intellectually advanced.
At age 34, our son is autistic, has an IQ of 59, has CP and more, and will never live independently. In fact, he can't walk out of the house by himself.
He lives with us at home. My husband and I care for him -- we are now 63 and 68 years old ourselves.
Our son had his first heart attack last year, after being in out of the hospital and ICU for the last 8 years. (It is common for preemies to have early cardiovascular/pulmonary problems.)
We have to be with him -- at home and in the hospital -- 24-7.
At age 3 or even at age 6 or, perhaps, even at age 8 -- when he was first diagnosed with CP, or maybe, even at age 18 when we first heard the autism diagnosis, we would have given an optimistic projection on his outcome.
At this point in our lives our main point of optimism is that our son is too mentally impaired to understand that he is mentally impaired. As a result, he does not suffer emotionally from the knowledge of his disabilities.
So many preemies with lesser degrees of mental impairment are not so "lucky."
What I want to emphasize here is that many outcomes, and their consequences, aren't clear for five years, or for a decade, or more.
My perspective, like 23wktwinsmommy, has evolved as the years went on. Her and I have become friends and she truly is respectful of the emotions surrounding this discussion.
I used to be angry (when Paige was under 2) when people would talk about limiting resuscitation based on gestation. Back then Paige was one of the younger ones born, at 25.5 weeks.
But as the years went on and I could see the real tragedies that were occurring, my attitude changed. Knowledge has an unbelievable way of putting perspective on an issue.
The blogging world has given the public a glimpse into the lives of preemies. Unfortunately it is unbalanced. There are many blogs out there with cute pics of preemies whose parents are filling their pages with joyous updates that give the reader the idea that all is perfect. (*I am NOT referring to 23wktwinsmommy-although her kiddos are so adorable. She writes honestly.)
What the general public does not see is the behind the scenes realities, which those preemie parents openly discuss on private support groups.
The "happy-happy-joy-joy" stories become fact for people, who then go around talking about how "that preemie that I read about on the blog was born at 23 weeks and they are fine. See all preemies are just small babies and they will be fine."
It is a never ending cycle that has to be broken. Yes, I love my daughter, with all of my being, but our struggles are important and need to be told.
Reality Rounds' blog (and other blogs with brave authors) is important as it gives perspective for those who never had the knowledge on the realities of life in the NICU.
Stacy, you just touched on an important point for me: non-preemie parent lay people reading just part of the story of some individuals and disseminating it to others as the Truth with a capital T. (Which probably included me up until a few years ago!)
All most people know (or need to know) is that preemies can be saved. Degrees of prematurity is a bit subtle, or beside the point. I think that if you don't have much first-hand knowledge of any topic, it's hard to remember the exact details. (To be fair, I don't really understand the differences between the different stages of cancer, just learned that there's such a thing as a quintuple bypass, and know almost nothing about most medical conditions!)
I can't tell you how many impossible stories I heard after my daughter's birth--several second- or third-hand and all meant to be encouraging--about other premature babies.
Most of my family and friends don't remember exactly how premature my daughter was, and I don't expect them to. I do sometimes wonder, though, what parts of our story are being told to other new parents, and with what impact.
Do they tell people about this child they know who was "only two pounds!" or do they remember that she was actually 2 pounds, 12.5 ounces? (BIG difference!) Do they tell people how she's brilliant and gorgeous and hilarious? (All true!) Do they also mention what's gone wrong?
If people can't remember whether she was one, two, or three months early, or that there are lingering "mild" issues which have an enormous impact on our family, how could a lay person possibly understand that there's a critical difference between 22 and 23 weeks?
Kathy,
You are correct...I have heard my dad tell people my kid's were born at 20 weeks...to him 20 weeks and 23 weeks are probably the same thing. They are not. I am sure lay people have no idea what we have gone through and continue to face. They just see two adorable kids who are often smiling and having fun.
We are doing our part to "teach" the public. For the past 2 1/2 years they have been filming a documentary on our family...(not because I'm cool, but because hubby is...he a professional boxer...a really good one.) This documentary has captured the highs and lows of the twins' health, development, and our relationship as a couple. There have also been articles in our local paper, a short half hour special documentary on our local news station, and recently, a story in this month's issue of the Ring Magazine. The documentary going to be pretty powerful if the filmmaker ever wraps it up. Think boxer faces struggles in and out of the ring...
I think if everyone does their part to showcase their reality...in one respect or another, we can spread the truth about prematurity with our own personal spin on it. Ours is honest--times we had no sleep because the kids were sick, hospitalizations right before hubby's fight, times we wanted to kill each other because we were just so stressed and overwhelmed; but to some we'll look relatively "optimistic," and "grateful." I guess because that's just the nature of our family. We are not bitter people and we don't believe feeling sorry for ourselves will do us or our kids any good. We are fighters...literally. Yeah, our kid's have special needs and health issues...they are still our kids and we love them more than anything in the world. Everyone has their own experience and their own perspective, by doing your part to spread your story you might be able to portray a more balanced, realistic view of prematurity. So keep blogging, keep participating in conversations, and keep sharing your stories.v .mv c,,vncv cnjvc njvc kbh cv, hvc,jlgbsz
Serena added the last part of my comment and pressed entered without me rereading it. That's what I get for trying to type before she's in bed. lol
Listeria attacks axons- hence, decompensation. You know that. Again, be fair.
Stacy,
I have followed your blog since my twins were born and appreciate the candid information presented. I'm pragmatic by nature and truly believe in the age old adage of "expect the worst, hope for the best." Time will tell. My twins are doing well thus far and as the mother of two older (full term) boys, I feel like I am savvy enough to notice any potential red flags as they present themselves. That said, I really can't imagine how they would fare had they been born a full month earlier (they were 27 weekers). I would have wanted a choice but can't speak for my husband who tends to be much more optimistic than me. It's a sticky wicket, to say the least.
How is your daughter doing with the homeschooling?
Melanie
To Anonymous 8:21 who wrote:
"Listeria attacks axons- hence, decompensation. You know that. Again, be fair."
***
Oh for heaven's sake.
Prematurity, in and of itself, destroys axons, myelin, and neurons -- what do you think white matter injury/abnormality,or gray matter injury/abnormality means?
Virtually all very premature babies have these problems to some extent. Please see the many studies by Terrie Inder, Joseph Volpe, Serena Counsell, Jon Skranes, Catherine Limperoupolos and others on how extremely widespread preemie brain damage/atrophy is, most especially -- and severely --below 26 weeks gestation.
And, as discussed above, steroids apparently make it all much worse.
Please note, as well, that listeria is a *very rare* cause of preterm birth.
However, brain-damaging perinatal
inflammation/infection from other organisms and conditions are close to ubiquitous in very preterm infants.
My son's outcome is much better than that of many disabled preemies. In fact, some studies would consider his problems to be only "moderate" or "mild", but they are severe enough in their impact that, at age 34, he cannot live independently.
Yes, there are degrees of poor outcome in preemies, and, yes, listeria is bad -- it has a 20% mortality rate. But I survived it with no neuro consequences, one of the neonatologists who treated our son had it *severely* as a medical student and still functions quite well. As I've said before, I know fullterm children who've survived perinatal listeriosis with no apparent problems.
A good many preemies -- who never had listeria -- are a great deal more severely disabled than my son -- who was walking at 18 months and reading at age 2 and considered advanced by the child psychologist at the NICU follow-up clinic.
Now, will *you* be fair and drop this nonsensical discussion?
Organizations like "The Children's Miracle Network" and "The March of Dimes" does nothing to expose the reality of extreme prematurity in the eyes of the general public. It's all sweetness and miracles. No wonder people react like this when a mom posts this misinformation on her blog!
Most people have no clue - none to the horrors of neonatal care and the horrendous outcomes of many of these tiny babies. If these people who so callously replied to this mom's blog would spend an hour with my daughter - now 23, bed-bound d/t cerebral palsy, as well as profound mental retardation, seizures, secondary to grade IV IVH, secondary to extreme prematurity, I would pretty much guarantee that their attitude would change. Changing a diaper on a 23 year old young woman who is having her period - yeah, that would pretty much do it for these people who think they know it all.
A tubal reversal is a procedure to undo a tubal ligation, which is the surgical sterilization of a woman. Also known as tubal reanastomosis, the route is usually performed when circumstances have changed and a woman wishes to have a child.In women of childbearing age, one egg (ova) from an ovary moves into the fallopian tube each month. There, the egg can be fertilized by a man’s sperm produced in ejaculation during sexual intercourse. Once the egg has been fertilized, it travels down into the uterus (the hollow, muscular cavity in a woman’s pelvis) and implants in the uterine wall, where it develops into a fetus. In a tubal ligation, the fallopian tubes are separated or sealed shut to prevent the sperm from reaching and fertilizing the egg.Each year, about 17 percent of U.S. women aged 15 to 44 years have a tubal ligation, according to the Centers for Disease Control and Prevention (CDC). In some cases, a woman may change her mind and decide to have the procedure reversed. Common reasons for seeking a tubal reversal include change in marital status, death of an offspring or husband, or young age at the time of the procedure (e.g., younger than age 30). In the past, tubal reversal more often than not destined major surgery. However, advances in surgical techniques now make outpatient surgery an option for many women.
Wow, what a read this post was. I completely forgot what I was googling when I found it.
I am gonna add my two cents for what its worth. Everyone is up in arms because someone said a baby and die in the same sentence. I have twin preemies born in January That is supposed to be a good viable point, but one of them passed away at 16 days old.
I can remember the shock of that day, But the NICU SAVES preemies. She was supposed to come home. They just spend a little time in the hospital and then are fine. That is what everyone thinks. But the NICU is not fun, preemies are not cute little babies. My other twin was 1 lb 13 oz, and went home after 67 days, and she did better than most. But she is a lot of work.
There needs to be a cut off people, And when there is a cut off there are always people under the cut off who feel it should be lower. That mother is grieving, and I understand where she is coming from. But she has convinced herself her baby would have lived just because her grief needs someone to blame. I doubt she would not feel that way if she had to watch her baby suffer the way I watched mine suffer and die. The grass always looks greener on the other side.....
I am commenting on this post because it is the latest one in the blog - this is a response to the whole blog, and not to this particular post.
I don't know if NICU efforts have become more concerted (due to medical advances), more common (due to multiple births or perhaps other reasons for increasing premature births) or more lengthly (spending longer in the NICU, resulting in living children, and thus VISIBLE for people to see and know they went through it...), but I have been hearing more about it recently. I suspect that whatever the status of those other things, the fact that people come out and speak about their experiences, and agitate for people's awareness of these experiences, is relevant.
Anyway, I don't know much about prematurity, it is almost entirely outside of my sphere - I know people who were premature, but rarely hear their thoughts on it, I know people whose babies were premature (even severely premature with ongoing health issues as a result) but I still don't hear too much about it. It's just not a big thing in my life.
So that is what I know about prematurity, how it is connected to my life - not much. I do not have much to contribute to any discussion here. I just wanted to say hello, I read when you post, I am glad this blog exists for the discussion it brings up.
Deleketala- I know a fabulous 6 year old one pounder one ounce. He would have been cut off. Skis, skateboards, and funny as hell. It kills me that this guy would not have been given a shot to live were there a cutoff.
According to the Neonatal Research Network at the NICHD, a 1 lb. 1 oz. baby boy in the US currently has an 85% + chance for death or moderate-to-profound disability by the age of 2.
And, as most of us on this list know, 2 year followup reveals only the tip of the iceberg of eventual disability.
It's odd how those that write you are heartless and unfeeling write with such viciousness that it's hard to imagine they possess any compassion at all. I have found most of the harshest critics do so from the luxurious position of parenting a perfectly healthy baby born of a perfectly healthy pregnancy. Judgment cannot be made on numbers alone. Every baby is different. Our NICU neighbor was a 25 week preemie who is now an almost perfectly healthy 2 year old, while his 36 week sibling died. NICU nursing has got to be a soul crushing battle every day. Tons of parents owe their children's lives to you. Kee up the good work!
Estimated Due dates can can be wrong. Lilike was due July the 2nd 2003 and was born on June 25th 2003at 7 pounds 1 ounce
Locke was due May 27th 2006 but was born May 29th 2006 at 7 pounds 4 ounces. Anjeni's original EDD was July 28th 2008 from a 1st ultrasound then she was estimated to be due July 24th 2008 but rapid labor began an hour before dad had to get ready to go back to work from his holidays on July 22nd 2008 at 7 pounds 13 ounces.
Stacy,
Are you coming back?
Melanie
Helen, thank you for your comment that many outcomes aren't clear until a decade or longer. There's a fallacy among doctors and parents alike that with enough love and early intervention, a VLBW baby can catch up age 2 or only have "minimal" cognitive disabilities. What most people don't understand is that a 'minimal' cognitive disability age 2 or age has major effects at 22. I am 26 years old and I see to be getting worse, not better. I have flunked out of grad school. I live with my parents. My NVLD makes it difficult for me to keep a job.My frequent anxiety attacks make sleep almost impossible most nights. I went to the neurologist yesterday and he said "You're not that disabled, you just think you are." I wanted to punch him in the face. I feel like a really bad person that I haven't done as well as the other miracle babies. When you're not a miracle, people contribute it a personal or family failing.
To Anonymous 4:52:
If you are a preemie, you have done really well to make it to grad school in the first place!
What I want to know from all former preemies who might be reading this blog is: is it worse to be told that " brain damage from preterm birth might make your future life more difficult (scholastically and emotionally)" or to be told that "you made it through the follow-up exams at age two, therefore you are 'normal'" ?
I don't know the answer to this question.
On the one hand there is the problem of self-fulfilling prophecies. On the other hand there is the reality of the outcomes for most individuals who are born prematurely.
I know of some remarkable outcomes of people born prematurely -- but I've also seen the brain scans and the follow-up data and they aren't good. There are real and major problems. What does one do with this information?
Helen
"What I want to know from all former preemies who might be reading this blog is: is it worse to be told that " brain damage from preterm birth might make your future life more difficult (scholastically and emotionally)" or to be told that "you made it through the follow-up exams at age two, therefore you are 'normal'" ?"
That probably depends on the person, but speaking only for myself, it would be worse to be told that brain damage might make my life more difficult in the future. The knowledge would gnaw at me, and in fact, my own GP knows this, and for that reason, he would never send me for an MRI, so as not to cause uneccesary upset. He takes "do no harm" very seriously.
Nov 29, 4:52 Anonymous
Re: NLVD post.
One of my twins (the high functioning 25ish week survivor) like you, also has been diagnosed with non-verbal learning disorder (NLD or NVLD). .she is now 23 and sounds very similar to your what you describe in your post. She too - very intelligent, but significantly disabled by her NLD - lots of anxiety, extremely disorganized, executive functioning skills very impacted. These things I agree, appear to becoming worse as she ages. I don't know if it's her becoming "worse" or if the challenges of adulthood are making her deficits become more apparent.
Medical professionals who celebrate their "saves" should be aware that this disorder is common among preemies, extremely underdiagnosed, but so very detrimental to the day-to-day functioning of the individual who has it. We too, often get the "she's really lucky" or "she's so intelligent" or "there's nothing she can't do". .
She's very gullible, very easily victimized, doesn't seem to "get" dangerous social situations. Right now she's planning on moving to Europe to finish college. I cannot imagine how she will manage on her own, however, I need to step aside and let her go, she's an adult, but. . she may very well disappear into the world and never be heard from again due to her inability to successfully navigate through the social world.
Yes, NLD is a very very big deal.
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