I had planned on waiting a long time to write this post, knowing it may cause a riot. But, since I am accused of saying things, that I never have, I thought now would be a good time to set the record straight.
Also, I really believe that this topic NEEDS to be discussed. If we just sit back and let the current trend continue, it won't be long before 20 weekers are saved. That very thought scares the hell out of me.
All of you out there who have sent me nasty emails, posted about me on your blogs and started threads on preemie groups about me, I dare you to find one post or comment where I said that *all* babies should not be saved before a certain gestation.
I believe parents have the right to choose.
I am very open about my own experience. During my 2nd pregnancy, I made quite sure that everyone knew my wishes. I wanted only comfort care for my son if he was born before 24/25 weeks. Was this an easy decision? Yes. I cried about it for the weeks leading up to that gestation. Of course I wanted my son to live. But, I didn't want him to experience the pain and trauma of the NICU and beyond. I loved him from day one. I am thankful, every single day, that I made it to 35.4 weeks.
Again, I believe parents have the right to choose.
What's wrong with that picture is that most parents are not educated about the true side of prematurity. Beyond the miracle stories we see in the media and the cousin of a neighbor who knows of a 25 weeker, not much is told about the other side. How can anyone make a decision with only 1/2 of the information? The only way that I was able to make this loving decision for my son was because we had already been through it all with my daughter, born at 25.5 weeks.
Did I mention that I believe parents have the right to choose?
But, what happens if parents choose to save their 20 weeker? Should doctors allow it? How about a 21 weeker?
For this reason, and others, I do also believe that there needs to be a limit put on resuscitation. I will honestly say that I do not know what gestation should be the cut off. I am not armed with enough information to make that determination.
I do know that medical science has not caught up to the gestations we are saving even now. If you ask doctors, many of them will say they have a cutoff if their own child was born premature. That speaks volumes!
Ok, fire away. I've put up my shield and I'm ready.
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94 comments:
I had twin 25 weekers, one of which passed away. Fortunately, my surviving twin is very healthy, but I know we are in the minority.
I plan on having another child eventually, and I have often thought what my "cut off" would be. I am still unsure, but I agree there has to be a limit.
I think the media does a huge disservice by reporting on the "miracle" 21 and 22 weekers. How funny that they do not seem to be around when the children are older and struggling with many effects of their premature births.
I know both sides of prematurity, as I watched my son take his last breath on earth. The one thing I know for certain, is that it is possibly one of the most devestating things that can happen to a family. We need to educate and eradicate premature birth.
Hopefully, with great prenatal care I can avoid this journey with my next child.
Absolutely it should be the parents who choose. My son was an almost-25 weeker who beat the odds consistently until he was 3 months old, when he passed away from complications after a surgery. Would I do it (choose resuscitation at birth) for him again? Absolutely. But the key is, that was my choice. Maybe it wouldn't be right for another family.
Saving 20 weekers scares me, too. I'm not sure how I feel about doctors being able to refuse resuscitation on very early gestational age babies. For me, the issue came up more much after my son's birth. He was doing surprisingly well for three months, with a few caveats, until the complications I mentioned. My husband and I had to ultimately decide when to let him go - and that's where I get my imperative that it must be the parents who choose for their children.
As a NICU parent, we have such little control over our children's care. Our babies are essentially being raised by medical professionals. And yet, I still believe that parents know their children better than doctors and nurses. We learned to listen to our son, and let him go when he told us he was ready and couldn't fight anymore. We need this validation as parents, to choose for our children.
Of course, there are other issues at play here - I speak only from my own experience.
I forgot to add - I'm 28 weeks pregnant now. I decided early on in the pregnancy that 23 weeks would be my cutoff. I'd ask for comfort care if I delivered any earlier than that. Thankfully I did not have to find out if that would have been the right decision or not.
I totally agree. Thank you. I ran across your blog accidentally. I am glad I did. I have a 25 weeker and he is doing well. That is not the case with many many preemie friends we have that is born at OLDER ... thats right... OLDER gestation than we were. I don't know what is my cutoff. I know the whole side. It does make me think twice about having a baby so I don't have to do it again OR so I don't have to make the choice of how soon is too soon
Nancy Brown
kdbdallas.com/tyler
I really have nothing else to say except thank you for your honesty.
You know you don't need a shield for me. (Smile)
Yes, parents should have the right to choose. I would like to have had that choice, although I have no idea what that might have changed. I still feel perplexed as to where all these hospitals are that are so gung ho on pushing the envelope because I have met so few women personally who had that experience. Everyone I know who had <24 weekers were not even given the option of resuscitation, and these are all women who delivered at Level III hospitals with highly capable NICU's.
I understand well all of the dilemmas involved with "saving" these borderline viable babies. If we had been presented with all of our options and the facts ahead of time, I still don't know what we might have done. But having been on the side of "no choice", and by that I mean no resuscitation- only to find out that other parents are given the choice... that's a bitter pill to swallow.
Maybe it's too much to ask, and I know every case is different, but it does seem like the medical community should at least attempt to come to some uniformity of protocol.
I don't think you are horrible at all. I've just begun posting and getting involved in the very interesting conversations between you and others reagrding these very issues.
As I've shared in my past few comments, I decided to treat my 23 and 5/7ths twins, and after 122 days in the NICU they came home on Jan 29th of this year. You're right, more conversation needs to take place. Parents HAVE to know the realities of the NICU experience AND the aftermath.
I found out I was probably pregnant with twins at 5 weeks, that was confirmed at 7 weeks, and I saw a high-risk OB from 5 weeks on. I expected my pregnancy to go completely normal...my dad is a twin, meaning my grandmother had him and my uncle in "the olden days" what could go wrong? They were spontaneous, I am in my early 20s, healthy as can be, no drug, alcohol, caffine use at all. Preemies and all that stuff happens to irresponsible, drug-addicted moms right? WRONG. I never knew ANYTHING about preemies, let alone micropreemies. I found out I was in labor and funneling only after a routine ultrasound at 23 and 2/7ths weeks. To this day I have no explanation for any of it.
I was panicked and heartbroken. Medical knowledge, or lack there of, did not need to tell me this was way too early. Wasn't it? They are only half cooked in there. But NICU came, and I was told I was on "the cusp of viability" and if I got the 48 hours of steroid shots they had a good chance according to the NICU.
Well, in those moments, there was no other choice for me. I heard "they have a chance" (I think they even said 50-60% with the steroids for me) and I honestly ignored all the possible complications, although I was informed of them...NICU ones and beyond.
What I did give more thought to was treatment once they were born alive and stabilized in the NICU. There was a limit to what I was willing to do to keep them alive, and I do not feel guilty about that at all. I wasn't going to keep treating if sats were low for very long periods of time even with the highest ventilation, I wsan't going to continue if there was a large head bleed that was definitely going to cause major brain injury, etc. I wasn't going to use medication to restart their hearts. If they were trying to die, I was going to let them. I know some will argue they would have died had I not put them on a ventilator to breathe for them in the first place, and you are right. But it was my choice to treat them how I wanted, to chose a DNR if I wanted, or to believe that some miracle would touch our family.
I only really figured out what we were in for once we resuscitated. To this day I can't tell you that reading everything I've read would have changed my mind about resuscitation of my 23 and 5/7ths weekers. I was told by the NICU team there was a chance, and a chance they would do well. I don't think I could have lived with myself if I didn't try to save their lives, but that's just me. And EVERYONE is entitled to their opinion...after all, it is the parents who will be responsible for caring for these micropreemies.
I completely agree with Lori, although I don't know how practical it would be because Drs have different viewpoints and ethical standards, as well as different medical capabilities. We happened to be at one of the best NICUs in New England. Had we delievered somewhere else, there would have been no hope. Another reason to have your babies at a hospital with a Level III NICU...no matter what. But I digress. I agree with Lori because I think it is heartbreaking for parents to be told there is no hope at 25 weeks when there are quite a few 23 and 24 weekers who are being saved and having similar NICU courses and long term outcomes. That has to be extremely difficult. And I can only speak from my experience but the treatment for my two was really no different than the 24 and 25 weekers we came to know. You can't make a distinction though because maybe the mom didn't get steroids, we can't speak for long term outcomes, etc, etc.
But, what I can say is had I not decided to save my 23 weekers, I would have been compelled to read about the people who had, and I would have read some pretty amazing stories and seen some pretty moving pictures and videos of 23 week survivers. Even if they had issues, there would be no escaping those smiles. I know in my heart there is no way I would ever get over that pain. But again, that's just me.
Egad, there are some astute parents out there, who have self-reflected and sorted out all the pathways . . . perhaps moreso than the docs, who make decisions based on what? MERELY studies? And they justify their decisions (made without parental inputs) because they are more academics than clinicians, using evidence-based research--without factoring in parental values . . .
To Lori and to mom of 23 5/7 week twins, who set their limits (or who would thoughtfully do so):
I imagine you calling or being physically present in the NICU, and asking a bedside nurse at the end of each shift, "Did my child have any deep desats on this shift? Any apneas or bradys? Did you have to turn UP the O2 or vent settings? Do you think he is trying to die?" and other such questions about respiratory status, brain bleeds, etc., in order to keep a running evaluation going in your own mind (and probably in a notebook, if you have a 100-day stay in the NICU).
On the day that the first head ultrasound is done, you, the parents, are there, knowing that the results--a severe brain bleed--may be a turning point, and you are prepared to change the course of events, and make a hard decision.
If your kiddo cannot be weaned off the vent, and steroids are suggested, you are there, again, prepared to make the hard
decision(s).
You have a talk with the neo several times a week. You guage whether different neos who are covering when your own neo is off duty, have differing opinions, and you factor that in.
You talk to all the members of the treatment team, including the respiratory therapists, nurses, OTs, to ask them questions about your child's progress/abilities, deficits, etc. You ask for a weekly care conference so that all team members are sitting together with you at the same table, at the same time, and you can see if they are in agreement. YOU ASK THEM WHAT THEY WOULD DO IF THIS WAS THEIR OWN CHILD.
You sit by the bedside, doing Kangaroo Care, and you meditatively ask your child if s/he is suffering too much, and if s/he wants to go or stay. You may ask your higher power the same questions.
If you think bald fear is pushing you into a panic-stricken decision, you devise a failsafe for when you are panicked. Your partner, the other parent, steps in and delays or declines a decision until you are more in charge of yourself, more able to think/act according to your values and your pre-determined plan.
Finally, you decide, within a range, what your cutoff for resuscitation-at-delivery would be. The neonatal docs who blog seem to be in the 25- to 26-week range, but you must find your own theoretical cutoff, and then decide which factors would push you to either side of that range.
If you, the mom, are medicated at the time of the delivery, you must set up a mechanism for the other parent to make the decision. If your own doc (OB) or perinatologist, if you have been consulting with one through your high-risk pregnancy, is NOT there, and the docs attending do not know your plan/values/predetermined decisions, you need to be sure they are in agreement, via a written document in your chart, that they will read and understand and agree to ahead of the fact.
I am sure I have not covered all the bases with respect to pre-planning and decisions about setting limits.
As parents, our whole lives are about setting limits for our kids. Let me repeat---you guys are both astute and brave in setting and enforcing LIMITS, even at the time of birth.
When it is all over, and you are grieving or anxiously waiting out those 100 (or so) days, you will say to yourself---and I believe this has nothing to do with evidence-based medicine---"It was means to be" or "It wasn't meant to be". It has to do with getting in touch with your own values and considering the evidence and outcomes of other 23-, 24-, 25- and 26-weekers, but mostly it has to do with YOU and who you are and what you value and how you decide.
S, your next post should be on the equally difficult part where both parents need to be on the same page about these things. To me, that might be even harder, in some cases, than the making of a clean decision.
Chris and Vic
I'm a mom of 24 weeker and a 23 weeker. We did not try to save our 23 week son for many reasons, the most obvious being I was not near a NICU facility when he was delivered. No decision necessary there, and I'm thankful for that...the black and white was comforting. Since then I have found every decision in regards to my micro preemie excruciating. My 24.1 weeker was delivered at level III NICU and I asked that all measures be taken at her birth to save her and that we would reassess after the first 24 hours. That meeting 24 hours later was extremely difficult. We were told about the path *most* 24 weekers take and that it would be a very long road that could or could not have a happy outcome- with the parents defining what *happy* meant.
The long and short of it for me is that parents should have the ultimate choice. It should be noted that I did choose before my daughter was born (at 18 weeks) NOT to resuscitate before 26 weeks. My doctor put it in my file just incase I wasn't of clear mind at the time. Regardless, I changed my mind in the heat of the moment and thankfully they let me change my mind. Having a cut off is difficult b/c as Nancy Brown noted babies seem to fare differently in the 20's. I have seen firsthand 27 weekers with far more serious disabilities than 25 weekers. According to the stats this doesn't make sense and it's not a media miracle story, these are fellow NICU families that have babies of all different gestations with different outcomes. How come my baby didn't have a brain bleed but our neighboring 28 weeker did? I was told 28 was the safe zone. Is this a fluke or is this just the gamble of prematurity...it's all a crap shoot to me.
You do your best with the best information available. The key being information---more OB's need to start having these tough talks with their patients. Most upper middle class OB's don't see this type of outcome, I was only the 2nd patient to deliver a micro preemie. My feeling is that they'd rather not rain on the happy day of the expecting mother.
anonymous- I think you make an interesting point about OB's who work in traditionally "low risk" populations. While I do look back on my OB's response to our tragedy as highly compassionate and kind, I do feel as though he was ill prepared to deal with an extremely premature delivery like ours. At an appointment just prior to my admittance to the hospital, when we thought everything was fine, he flat out told me I didn't really need to start worrying about signs of preterm labor until about 26 weeks. Unfortunately, I do believe his words did prevent me from getting to the hospital sooner than I might have because I convinced myself I was overreacting.
The OB who attended my delivery (different OB), kept asking me all kinds of questions about my past labor and delivery history as though she was trying to uncover the mystery of this preterm delivery. She kept saying how "rare" this was, and acted as though it was a complete puzzle as to why this was happening. In hindsight, I think it was only "rare" for them in their small, middle-upper middle class, low risk, obstetrics practice.
Chris- I think you may have misunderstood my post, and my experience. I did not set my threshold, it was set for me. We were told there was "no hope" for our 23 weekers and I was told there was less than a 1% chance I could make it to 24 weeks, which was the point at which resuscitation would be considered. We believed what we were told and allowed nature to take its course. Maybe in the end that was still the best action, even we didn't really "choose" it. But it's still been hard to live with.
Chris and Vic. You are absolutely correct about what we did in the NICU. We are thankful that our NICU is run on the family-based model. We had access to all decisions and were asked our imput on everything. We had family meetings, and I only missed a handful of daily rounds in their 122 day stay (they would actually do other cases and wait for me if they knew I was running a little late.) The NICU knew our family, and knew us well, they were aware of our beliefs and desires for our twins.
I too would like to see a post dedicated to differing parental beliefs. *We* were pretty much on the same page, but I often wonder if our son didn't turn the corner when he did, (we came quite close to discontinuing support...he struggled to get off the oscialltor, and if he hadn't respond to the steroids we would have ended support), if "Daddy" would have been able to really go through with it.
Does anyone know if there are gestational resuscitation limits in other countries? It does seem like the US "pushes the envelope" so to speak, much more than the rest of the world.
Personally, I think that it makes more sense to spend loads of money trying to find out causes and prevent preterm labor in the first place than to try to save all the 21 week preemies.
My own limit would be 26 weeks.
This was the gestational age that community groups I worked with in the 1990s thought was a reasonable high end point for the "gray area" in which parents' wishes about treatment should prevail.
These community groups met around the country to develop guidelines for their specific states. The members included parents, physicians, neonatologists and NICU nurses, attorneys, ethicists, clergymen, and interested members of the general public.
Nothing much has changed in neonatology since the mid-1990s (except that some centers are using less in the way of postnatal steroids).
At best, we are now seeing (with less steroid poisoning) a return to the disability levels of the 1980s -- and these were the statistics the community groups were working with in the 1990s.
Outcomes from the ongoing EPICure study (of babies born more recently) further reinforce the wisdom of the community group guidelines.
Also, MRI studies now show that 26 weeks marks an important biological boundary.
Children born at or below that age almost universally suffer significant permanent abnormality in brain growth and organization. (other organs may be similarly impacted)
26 weeks would be my own *personal* gestational age below which I would decline resusctation at birth. I just think the burdens are too great and the benefits of treatment too meager.
What tips the balance of "burden vs. benefit" for me is the suffering involved in treatment of these babies --babies whose skin and lungs and brains and other organ systems are so painfully immature, and whose future health and development are so seriously derailed by preterm birth and NICU treatment.
For example, the pain of treatment itself is known to cause brain damage over and above that inflicted by the preterm birth.
Almost every affliction of prematurity is more likely to afflict bbies born <26 weeks, and with greater severity.
However, I would strongly support the right of any other family to make a different decision and opt for resuscitation and active treatment.
I would also support the right of medical caregivers to refuse to participate in care (full scale intensive care or comfort care) that conflicts with their personal belief systems.
I realize that there will be a few babies born below 26 weeks who would have survived with mild problems, or even, in rare cases, without obvious problems, however we need much better longterm follow-up to determine this, studies that focus on all the organ systems, not just the brain.
I recognize that babies with higher gestational ages may also suffer bad outcomes. In fact, I think they do so at a much greater rate than is generally recognized.
But I am not sure that allowing parents to make "no resuscitation at delivery" decisions on, say, a 29-weeker is a good idea, or politically feasible. I would make an exception for those situations in which additional complications (such as grade 4 IVH, PVL, severe BPD, etc.) cause great suffering and/or make a good outcome unlikely. This was the case with my son, born at 29 weeks.
I would also like to see the care of babies 26 weeks and below openly declared as experimental, with the understanding that babies who are actively treated may be subjects in randomized controlled trials to determine the safety and efficacy of treatments that are *already* in use in the NICU, but about which there is a lack of evidence (and that is just about everything done to babies in NICUs). I would strongly encourage babies of all ages in the NICU to be part of randomized controlled trials.
I would want parents to have full financial coverage for any such treatment and high quality follow-up and health care for their child for life.
I have been reading these blogs in an effort to find out more about prematurity (i am currently pregnant with twins). I have no experience with preemies so i wouldn't usually comment here. I also admit that i find many of these discussions and viewpoints deeply disturbing and they have cost me quite a few sleepless nights. My perspective is perhaps somewhat different because i have not had the preemie/NICU experience or a special-needs child, but i did lose a baby at 34 weeks gestation (for no known reason -- he just died in utero and was stillborn).
Anyway, last week i was visiting family and discussion turned to preemies -- 'oh you are 6 months along now', said my MIL, 'the babies can be born any time and they will be fine'....uh NO?? HELLO? Apparently the fact that 'viability at 24 weeks' means '50% chance of survival' was news to the rest of the people in the room -- and that is not even bringing up the many issues of long-term health problems/severe disability/etc.
So my point is that yes, as has been said many times here -- media portrayal of 'miracle babies' does a huge disservice to everybody because people do not know the truth, and in general people do not wish to confront truths which are unpleasant. So i applaud you and your blog for facing these issues head-on and raising much-needed awareness. Thank you.
Going back and forth between this blog and ND...resuscitation limitations and guilt,oh, how they go hand in hand. As I mention earlier my cut off, like Helen's, was 26 weeks and then when I was in the delivery room at 24 weeks all I could think about was saving my baby at that moment, all rational thinking gone. So now I have guilt about being selfish, I didn't want to lose another baby and I know I would have had guilt if I didn't try to save her...guilt all around. Although on paper I agree with the 26 week cut off, my real world and my daughter make me so happy that we follow our original plan.
meant to say, "happy we didn't follow our original plan." difficult to type w/ an 11 mos old....preemie or not
Anonymous said:
Although on paper I agree with the 26 week cut off, my real world and my daughter make me so happy that we follow our original plan.
I completely agree. I wish so badly I had reached at least 26 weeks, but I didn't, and here someone was telling me they had a chance.
I hear what Hellen is saying, and she is correct. It is a big experiment, and I screamed and cried that I didn't want my children to be some sort of experiment while they were in the NICU...truth be told they were...they all are...it's still an unknown science...slowly trying to push the envelope...and the guilt haunts me.
I guess what helps me is knowing I will do everything in my power to advocate, love, and care for my children.
I go back and forth between whether or not I would have wanted the choice. If they said, "no sorry 23 weeks is too early" it would have saved me from having to decide, but it would have also haunted me to know that in another hospital 23 weekers were resuscitated and going home with their parents. This is an issue with no easy answers. I think it's easier to say you have a limit in mind, but realistically when you're laying there in labor, letting go may not be as easy. Perhaps it would be to a parent who already had a preemie with a not so positive outcome. Otherwise, I think many moms new to this whole world of prematurity may think they won't resuscitate before a certain time line, but if they are told by a medical team their baby has a shot, it might be a little harder to say okay we are deciding to let our baby die.
Question for Hellen...we opted to give our twins steroids (my daughter a short course to get her onto CPAP) and my son a longer one...he was the sicker of the two as most boys are. I consulted with the NICU team and the Developmental Specialist who follows NICU graduates in-clinic. I was told the risk of steroid use was low, especially since we waited until they were a month old to administer them. I was told there was a large number of preemies who developed CP and other neurological issues when steroids were administered from birth onward, to try and avoid CLD. I was told that waiting until a month of age has shown much safer results, and that the amount was carefully monitored and administered as not to cause major issues...they decreased the dosage every other day or so.
You say "steroid posioning"...was I grossly misinformed?
from the BBC news...more aggressive than I thought. It has the cut off of when a parent can decide at 25 weekd
Do not revive' earliest babies
A premature baby
The report says babies born at 22 weeks should not be resuscitated
Babies born at or before 22 weeks should not be resuscitated or given intensive care, a report says.
The recommendation is being put forward by the Nuffield Council on Bioethics, which considers ethical questions raised by advances in medical research.
For those born after 23 weeks, the recommendation is that doctors should review the situation with the parents and take their wishes into account.
But doctors warned no two babies born at 22 or 23 weeks would be the same.
The report has been released after two years of research.
We don't think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable
Professor Margaret Brazier
Nuffield Council on Bioethics
Saving premature babies
Q&A: Premature babies
It also gives guidance on how parents should resolve arguments with doctors over the fate of their babies.
The report comes against a backdrop of medical advances which have been able to sustain the lives of very premature babies.
However, research shows that many of these babies do not live very long, or go on to develop severe disability.
Part of the problem is that despite advances in modern medicine, it is not always obvious to doctors which babies will survive and thrive.
Professor Margaret Brazier, who chaired the committee that produced the guidelines, said: "Natural instincts are to try to save all babies, even if the baby's chances of survival are low.
"However, we don't think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable."
The inquiry also looked at longer-term support for families, and resource implications for the NHS.
But it rejected suggestions that active steps be taken to end life - so-called baby euthanasia - in certain circumstances.
REPORT RECOMMENDATIONS
Born before 22 weeks: No intensive care
22-23 weeks: No intensive care, unless parents request it after a thorough discussion of the risks and doctors agree
23-24 weeks: Parents, after a thorough discussion with the healthcare team, should have the final say
24-25 weeks: Give intensive care, unless the parents and the doctors agree there is no hope of survival, or the level of suffering is too high
Above 25 weeks: Intensive care as standard
Bliss, the premature baby charity, is campaigning for one-to-one neonatal intensive care, and for decisions to made based on clinical reasoning, and not financial constraints.
The charity said the UK had the highest rate of low birth weight babies in Western Europe.
About 300 babies are born in the UK each year at 23 weeks.
They have a 17% survival rate, compared with 50% for those born at 25 weeks.
Figures suggest that no baby survives at 21 weeks, while only 1% survive to leave hospital at 22 weeks.
Andy Cole, Bliss chief executive, said: "While only a small percentage of infants in the UK are born at 24 weeks or less, it is essential that every baby should be treated as an individual and given the best and most appropriate care at the point of life.
"We strongly endorse the recommendation that assessment of care for the most vulnerable infants needs to be a joint decision between parents and clinicians."
All babies different
We cannot agree with stringent cut-off points for treatment
Dr Tony Calland
British Medical Association
Send us your comments
Dr Tony Calland, chairman of the medical ethics committee of the British Medical Association (BMA), said much of the report echoed "existing best practice".
But he added: "The BMA believes that blanket rules do not help individual parents or their very premature babies.
"Each case should be considered on its merits and its own context. While we believe that not all patients, including babies, benefit from medical intervention if survival is unlikely, it is important that each patient's circumstances are assessed independently.
"We therefore cannot agree with stringent cut-off points for treatment."
Bert Massie, chairman of the Disability Rights Commission, said: "The decision to treat or not treat should be based on individual assessment.
"To fail to do so would potentially be discriminatory and breach human rights legislation."
There are about 250 units in the UK offering neonatal intensive care, high dependency and special care.
Earlier this month the Royal College of Obstetricians and Gynaecologists said it wanted a discussion over whether "deliberate intervention" to cause death in severely disabled babies should be legalised.
But the report recommends the active ending of the life of newborn babies should not be allowed, no matter how serious their condition.
The Nuffield Council on Bioethics was established in 1991 to examine et
Ruth Levy Guyer, who wrote Babies at Risk, has studied the Nuffield recommendations in-depth. I will try to get her to post to this blog, or alternatively, I will get her permission to post her email addy.
Chris and Vio
To 23wktwins'mommy:
Steroids are described in the medical literature as "neurotoxic" to the developing brain. They do increase the chance of babies having CP and/or cognitive and behavioral problems. They also appear to cause problems in other organ systems(besides the brain).
However, so does being on a ventilator, and so does being born prematurely in and of itself, with the risks worsening as gestational age decreases.
I don't think anyone knows for sure what the outcomes are going to be with lower or later doses of steroids.
It would also be hard to unravel the different possible causes of disabilities if they should later show up in ventilator dependent 23-weekers who were weaned to CPAP using steroids.
The question that would need to be answered in such cases as you describe would be: is it worse to stay on the ventilator or is it worse to receive steroids and get off the ventilator.
I don't know, and the docs don't seem to know yet either, last I heard.
Are there any neonatologists out there who would like to cite any recent evidence?
Hellen,
That was exactly what I was told by the Developmental Specialist...better to administer steroids and get off the vent for better long-term outcome.
Either way, what's done is done, steroids saved their lives, lives some people may deem not worth living as 23 week survivers.
I was just curious if you read the research they were referring to when they told me, and lots of other parents, that steroid use was safer after one month of age. Or if you were aware of that research's existance.
p.s. sorry I see it's one "L" in your name...my apologies.
To 23wktwins'mommy who said...
"Either way, what's done is done,"
I agree.
***
" steroids saved their lives,"
This point is debated, but steroids do not seem to be saving lives in most studies.
***
"lives some people may deem not worth living as 23 week survivers."
Whether these lives are "worth" living is up to you and to them.
What other people may think is totally irrelevant.
However, accurate information on 23-weekers is crucial to new parents trying to make decisions.
Their decisions in no way reflect the "worth" of your (or their) children. All of our children are of infinite worth!
****
"I was just curious if you read the research they were referring to when they told me, and lots of other parents, that steroid use was safer after one month of age. Or if you were aware of that research's existance."
I am aware that docs think/hope it is safer. I don't know what your neonatologists were referring to specifically, and I'd be grateful if any docs reading this blog would give us evidence on this point.
Very interesting comments...I am a Neonatologist in training and just thought I'd throw my 2-cents in.
The Neonatal Resuscitation Program (how nurses/physicians are trained to help babies at deliveries) suggests the following:
25 wks and above - resuscitate
23-24 wks - Parental/Physician communication is key in what to do
Less than 23 wks - Strong recommendation NOT to resuscitate.
I think these are good recommendations, although I will probably suggest to parents that 24 wks is okay to at least try and monitor for the first 48 hours or so with ultrasounds, etc.
To the Neonatologist in training;
I hope that part of your training entails working with children who are moderately and severely disabled, so you have a more accurate portrayal of life after the NICU. You could do that by doing respite care in your community, working for a time in a school setting with special ed classrooms, pediatric therapists, etc. My feeling is that to many working in the NICU's, disabilities are just words, but unless you actually are seeing these kids as they age, people really are not aware of what this means to the child, to the parents, siblings and society.
I am having trouble reconciling the idea of case-by-case decisions and parental input with the recommendations. I mean, there are 3 parts:
*recommendations, Nuffield or *other;
*parents wishes/values;
individualized, case-by-case decision-making.
It is a recipe that needs all the ingredients, all 3. One is not more important than the others.
chris and Vic
Helen,
I appreciated your clarification of "worth." My 23 weekers are gone, nothing can change that, but their little lives and their presence in my life is still of immeasurable value to me. Their deaths are not a reflection of how much they were worth to us.
To Lori:
It is unfortunate that people sometimes feel this discussion is about "worth" or "value" or how much we do/don't love our children.
Our own son was born at 29 weeks nearly dead from listeria ( with cord blood pH of 6.9). We were told he was dying, that his death was unavoidable, and we grieved.
Our tears and obvious love for our baby conveyed to the neonatal staff that we wanted aggressive care to save him no matter what.
This was not our wish, and 31 years later I feel our wishes were right.
However, our son survived, and my husband and I have devoted our lives to him and making his life the best it can.
We could have easily institutionalized him (as we were urged to do by several neonatal professionals who had done this with their own disabled children).
Our son lives at home with us and will until we are no longer able to care for him. We do this because we love him, value him, and want him to experience life as fully and happily as possible.
We do the best we can. Nevertheless, I wouldn't wish this kind of life on another child or another family.
I said "some people", and did not address it to anyone. I think it is clear that in our society there are most definitely those who believe that a life of disabilities is not worth living. I'm linking life as a 23 week surviver and a life of disabilities because of the overwhelming evidence that 23 weekers will experience at least some complication as a result of their prematurity. We don't even need to get into that, Helen and others have shown the evidence exists, and I do not dispute it.
I am glad people here disagree, but I think it would be pretty hard to convince me there aren't some people out there who would say it's not worth living.
But what I should have said when addressing this audience is a life not worth saving...or in my case, lives not worth saving.
And let me repeat, you all our entitled to your opinions on that matter and you certainly have ample medical and personal experience to back your decisions. And once again in my opinion, not all 23, 24, 25+ weekers can, or should, be agressively treated.
to the preemie experiment.
Thank you for your courage in getting the message out about need for more honest discussion on issues of resuscitation, the ongoing experiment of treatments in the NICU, and the lack of consensus around many of these treatments in the absence of randomized control trials.
There is this cliche about the internet making things flat or equal. Because the internet allows for an exchange between mothers and neonatal docs, hospital based pediatricians, and other neonatal staff, there is real opportunity for each side to share its experiences, its opinions, in a respectful manner.
I hope this conversation continues, broadens its reach, and even has a clinical impact one day. Call me an optimist. Actually, I'm a pessimist, which according to Helen's proverb, is nothing but a well-informed optimist.
I know of 23 weeker twins who both survived 22 years ago. Both are disabled, naturally. .and their disabilities blew their family apart. Mom eventually left the marriage and household because she could no longer deal with it all. Dad had to quit his job and become a full-time caregiver. .this discussion on how far to go, or not go - does it matter? Depending upon the NICU, they're gonna do what they want regardless.
I think what is important though is to keep telling our stories - that it isn't silver-lined clouds, that we are dealing with some really nasty on-going issues out here! In addition, studies like Saigal's that is twisted and tweaked and omissioned into something really super sweet and positive needs to be hammered. It's just not happening like she says it is - no way. And why neonatologists continue to hang their hats on her studies, while ignoring (it seems) the Epicure-like studies is beyond me. Perhaps the truth of one's life work is too painful to deal with?
Comments like all of yours are so invaluable - I appreciate all of it so much.
Yet, they make me so scared to try again.
So very very very scared - my personal cut off is 26 weeks and I hate to have to make this decision, it breaks my heart to just think of it.
To pick up on what terry w/2 just commented on, the neos seem very enthused by Saigal's work, which shows very positive long term outcomes for preemies, but only by using some very questionable methodology. to find out more, see the debate on tales from the womb (recent post on glass half full).
When my NICU had its first ever parent council conference, Dr. Saigal was one of the keynote speakers and gave a very convincing powerpoint presentation on her follow-up studies of the single cohort. As helen and others have noted, this is a single cohort, and single center, and uses self-reports from preemies themselves about their own well-being. It should not be taken as the last or final word on long-term outcomes, which is what I and many other parents were led to believe at this conference.
Yes bad news hurts and can be uncomfortable, but I'd rather know the bad news and then begin to deal with that than be deluded into thinking everything is fine, until my kids are 6 or 8 and begin to get diagnosed with some of the conditions that Preemie experiment and Helen Harrison are spending their time publicizing.
What we need is debate and discussion that will spur neonatology into reconsidering treatments that may not have had sufficient testing and even reconsider thost that have been tested.
Let me offer an example. the most recent preemie experiment post had a little discussion about pain, that also cropped up on Dr. Bartram lovely blog, unintelligent design.
Dr. Bartram states quite frankly, "In all fairness, nobody performs surgery on infants without appropriate anaesthesia. If you know of this being done today, please provide some information on that."
So I am going to provide some information on the absence of any anesthesia for a surgical manuever. This took place in a level III nursery at an major teaching institution on the East Coast, in what is touted as a very family friendly and child friendly nursery.
Within the first 6 days of life, my 26 week old son was subjected to five attempts at placing percutaneous central venous line (PCVL). This involves snaking a catheter up a vein until it reaches the heart cavity. It must cause pain, because at some point, pain medication was given. But only after several failed attempts.
There were three initial attempts to place the line, all on one day, without any mention of pain meds. The nursing progress notes for first three attempts simply state "procedure tolerated well by infant". No mention of pain meds in the nursing progress notes nor the attending's daily summary of care.
The fourth attempt at placing this catheter was so unremarkable there is no record of it in the attending notes. There is, however, a short phrase in the nursing progress notes. Again no mention of any pain meds at all. Interestingly, on the days in the section for pain in the patient progress notes, the cries were listed as "not scored".
Did anybody care, did anybody even take note whether my son cried, or grimaced, or showed his discomfort in any way? Not clear they did.
At long last, on the fifth and successful try of the PCVL, there is mention of fentanyl for the first time. Maybe this helped?
I mention this only because there is a general view out there that 'we' no longer do surgery in the NICU w/o pain medication. My son's example suggests differently. The very fact that fentanyl was finally given on the fifth try suggests that one nurse practioner thought it might be painful enough to need anesthesia. But several other fellows and nurses didn't think so...
Regarding pain management in the NICU: I agree the babies are in a lot of pain. Sometimes it's hard to recognize because they are too weak to cry. At one point Ellie was making a face and arching her back and opening her mouth - soundlessly. The nurse pointed out that she was crying. I didn't even realize. She had some pain meds at times but not all the time. The theory seemed to be that she would not remember all this pain.
Now that she is four and has so many aversions - i am sure this is not true. How damaging is it to these little one's psyches, cell memory, and long term outcomes to go through this much pain? It's not clear to me. But I agree with Helen, I would not wish a premature birth on any child or parent.
I also think that parents in the heat of a traumatic birth experience are truly not capable of making a clear decision. We had no warning that we were going to deliver early. We had never thought anything about it. We would have fought for Ellie's life no matter what. I am glad we did, but recognize that things for us all could have been way worse, and then what? We are just treading water now.
I think the media does a disservice in creating this false heuristic that preemies do ok if not great like all the famous ones. The great majority don't do great and have life long issues. If this was the heuristic I think parents in the midst of a traumatic unexpected premature birth situation would be able to make more informed decisions. Let's face it, letting a baby go is one of the hardest things anyone could ever do. It goes against our biological will to live and continue our species. As a mother I bonded with Ellie when she was inutero.
I think the parents who do and have made the choice to let their beloved child pass are courageous beyond measure. I think they may also have been informed a bit better than most.
Someone earlier had asked about resuscitation limits in other countries....My twins were born at 26 weeks in Germany 7 years ago (we were in the military). My son was very close to dying after his IVH; but none of the doctors ever suggested letting him go. I'm not sure what I would have done if given the choice, but in retrospect, it would have been nice to been given an option.
Lastly, regarding resucitaion limitations:
I think that there needs to be widely reported and better understanding of the outcomes to decide. I agree that even if a 21 weeker can be revived that they are being set up for a life of disability. I would dearly love to know the stats on outcomes after age 6 or 7 of former 23, 24, 25, 26, and 27 weekers.
ryn tales said she
"would dearly love to know the stats on outcomes after age 6 or 7 of former 23, 24, 25, 26, and 27 weekers."
I will go over the studies that are out there which follow children beyond 6 or 7, especially those that sort outcomes by specific gestational ages -- I think EPIcure is the main one out there right now.
I can say that, by the best evidence available, about 2/3 to 3/4 of preemies born at 26 weeks or over will have some degree of diagnosed dsability by adolescence.
There have been projections made (and no evidence to the contrary that I am aware of) that about 40% of this pretem population (born at 26-33 weeks) have impairments that will make independent life unlikely.
Hi Helen,
Thanks for that information. I will look up that study. But 40% unlikely to live independently?! Those are horrible odds. I believe it is the parent's call whether or not to resuscitate. However, the parents should have access to these statistics and studies. We did not. That said we would have made the same choices. Even so it would have helped us understand better the path we were taking.
It seems like the research has come a long way since my child was born. That is a good thing. My question is, when the media publishes all these miracle baby stories why don't they include the real stats? Is it just plain bad journalism or are the statistics hard to find?
To ryn tales who said:
"Thanks for that information. I will look up that study. But 40% unlikely to live independently?! Those are horrible odds. I believe it is the parent's call whether or not to resuscitate. However, the parents should have access to these statistics and studies. We did not."
The study is by Walther et al. in _Early Human Development_ 2000;59:175-191.
Saroj Saigal's study, which unfortunately is based only on the accounts of the former preemies (27 weeks average gestational age)
shows 58% not living on their own at age 23.
However, it is not clear whether this is due to disability (although exactly that proportion of her cohort had earlier received special ed services)or just staying home to save money, finish school, etc.
Wow I am stunned how different everyone sees the life of preemies. My son was 24weeks and I never was once asked while in labor about what I wanted done. The only time I WAS asked this was when he was about two weeks old and very ill. Of course I said to do whatever was necessary at the time.
I have to say with the steroids that I really don't think that they do save as many babies as is thought. My son received 47 days of dexamethasone. Do I think it helped? No. Why? This was an unusually long course of steroids.
I asked my dh last night if I was to get pregnant again and we had a preemie would he want to save them at 24weeks? His answer,"why wouldn't I?"
I don't know how anyone can decide on a "cutoff". It is absolutely ridiculous to me. A 32 weeker can have more problems than at 26 weeker and so on. Now, I agree that they should not be saving babies UNDER 23 weeks but I don't know how a mother can decide when is okay and when isn't.
A link to the report recently published here in the UK which sets out gestations and resus policy.
http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_web_version_8_November.pdf
The guidance for deciding to institute resuscitation and full intensive care should include:
(a) An experienced paediatrician should be present at the delivery and make a confirmatory
assessment of the gestational age and condition of the baby.
(b) At 25 weeks of gestation and above, the relatively high rate of survival and the
relatively low risk of severe disability are such that intensive care should be initiated
and a baby admitted to a neonatal intensive care unit, unless he or she is
known to be affected by some severe abnormality incompatible with any significant
period of survival.
Below 25 weeks of gestation, where the delivery of an extremely premature baby
is anticipated and circumstances permit, the clinical team should discuss with the parents in a thorough and frank fashion, the national and local statistical evidence
for survival and the range of disabilities which are indicated for this age
group. In the consultation with the parents, the healthcare team should make it
clear that statistics indicate that most babies born below 25 weeks of gestation
will die.
(c) Between 24 weeks, 0 days and 24 weeks, six days of gestation, normal practice
should be that a baby will be offered full invasive intensive care and support
from birth and admitted to a neonatal intensive care unit, unless the parents
and the clinicians are agreed that in the light of the baby’s condition (or likely
condition) it is not in his or her best interests to start intensive care.
(d) Between 23 weeks, 0 days and 23 weeks, six days of gestation, it is very difficult
to predict the future outcome for an individual baby based on current clinical
evidence for babies born at this gestation as a whole. Precedence should be
given to the wishes of the parents regarding resuscitation and treatment of
their baby with invasive intensive care. However, when the condition of a baby
indicates that he or she will not survive for long, clinicians are not legally
obliged to proceed with treatment wholly contrary to their clinical judgement,
if they judge that treatment would be futile (see paragraph 8.32). As a first
step, it will be necessary to determine whether a baby is suffering, whether any
suffering can be alleviated, and the likely burden placed on the baby by intensive
care treatment (see paragraph 9.32).
Where parents would prefer that the
clinical team made the decision about whether or not to initiate intensive care,
the clinicians should determine what constitutes appropriate care for that particular
baby. Where there has not been an opportunity to discuss a baby’s treatment
with the mother (and where appropriate her partner) prior to the birth,
the clinical team should consider offering full invasive intensive care until a
baby’s condition and treatment can be discussed with the parents.
(e) Between 22 weeks, 0 days and 22 weeks, six days of gestation, standard practice
should be not to resuscitate a baby. Resuscitation would normally not be
considered or proposed. Only if parents request resuscitation, and reiterate this
request, after thorough discussion with an experienced paediatrician about the
risks and long-term outcomes, should resuscitation be attempted and intensive
care be offered. The treating clinicians must concur that this is an exceptional
case where resuscitation is in a baby’s best interests.
(f) Below 22 weeks of gestation, no baby should be resuscitated. For this age
group, we consider current attempts to resuscitate a baby to be experimental.
We recommend that attempts to resuscitate these babies should only take place
within a clinical research study that has been assessed and approved by a
research ethics committee and with informed parental consent.
(g) When intensive care is not given, the clinical team should provide palliative
care until the baby dies (paragraph 9.16).
I totally agree. We have a 28 weeker who is almost a year old. He is doing amazing, but I can't imagine how different he might be if he had been born earlier.
We have nephews that were born at 26 weeks. One of the boys has a trach. Both have had several surgeries, eating issues, and a ton of therapies. We were so afraid of prematurity!
Parents definately need to be informed and given choices.
Preemiemum;
Thanks for sending the detailed info from the UK in regard to resuscitation of preemies. The guidelines are quite good, I think. It sure does seem that the effort is trying to be made to include parental decision-making. The U.S. should be so bold as to implement similar measures.
It is instructive that the guidelines sent by preemiemum call for consults and repeated consults.
A pediatrician is mentioned. I can imagine that a member of the ethics committee at the hospital would be available on an on-call basis, perhaps together with the ped and somebody from pastoral care (cleric). If this cascade of consultations were to happen, we could ameliorate the panic and confusion involved in the on-the-spot decisions when a baby's birth is immanent. We would also be addressing the spiritual distress of these situations.
Another blogger talked about the need for education of preemie parents (before the fact). That is part I. But there are other parts, the spiritual/ethical parts, involved in these decisions . . .
So even though the Nuffield recommendations seem to be all about cut-off ages, there is, thankfully, the further recommendations for consults with peds and ethics experts (implied in the term "team").
I notice that a determination is being made about the baby's suffering at age 24 weeks. Finally!
Chris and Vic
Chris and Vic
To TERRI,
The US IS putting parental consultation into the mix. The new NRP guidelines say to resuscitate 25 wks and above, no resuscitation below 23 wks, and between 23 and 25 wks, to discuss with parents and decide together the proper thing to do. These are the new NRP guidelines that came out within the last year.
For me the cut-off for resuscitation is below 26 weeks. I don't think my husband would agree, but mercifully we were spared that decision as our twins were born 26 weeks, 2 days. Yet I have come to this years later, not when I was pregnant.
I realize this is tangential to the main topic of the post, but I want to know why parents don't have complete rights to make DNR decisions above 25 weeks. The Nuffield recommendations speak of decisions being made when parents and the clinical team are in agreement. But what if they are not in agreement? Why is it that the clinical team can and occasionally does override parental decisions regarding DNR?
It strikes me as odd that we give the neonatal team so much power, when its impact is so brief, if powerful. Where is this clinical team--the neos, the peds, and in-house ethicists that Chris and Vic mention---years later, when some of their patients are still suffering the effects of what happened in those brief few months of intensive care? Don't the parents know the most about their emotional, financial, and physical resources---all of which and more will be needed each and every day for the rest of a disabled child's life?
As an earlier post put it so eloquently , consider the difference between the bright and shiny NICU and the dreary, underfunded, shabby instutitional care where a small fraction of NICU patients may spend a portion of their lives. We should be aware that this fraction may not be as small as we hope nor shrinking quite as fast as we the docs would like us to believe.
Anonymous said: "The US IS putting parental consultation into the mix. The new NRP guidelines say to resuscitate 25 wks and above, no resuscitation below 23 wks, and between 23 and 25 wks, to discuss with parents and decide together the proper thing to do."
It's a start, but with the Baby Doe laws and Born Alive act out there, how much good are "guidelines?"
In our situation, having a one twin that was fairly vigorous and the other with a grade IV bilateral IVH at 25 weeks, we should have been allowed to have her disconnected from life support as we requested. It was denied. What will these "guidelines" do to ensure that families like mine will have their wishes honored?
Where I work, I have never seen an infant with Gr IV IVH not be offered comfort care/DNR/withdrawal of support (however you want to say it). We are also good, but certainly could be better, when we have children that are suffering without much hope of a "good outcome." I have found though, that many parents have difficulty no matter how severe the prognosis we paint for them.
For the parents out there, it is much easier to say "I would have liked this or that" at the time, but not knowing what your child's life is right now, would you have agreed to comfort care while sitting in the NICU hoping for a good outcome?
As good as the Nuffield report is, for those in the UK, its impact is much less in the US. We have politicians dictating how we can live our lives and stripping away parental rights (most of the time without us knowing or having any say).
Countries like the Netherlands do not allow resusitation before 26 weeks - are they more primitive in their respect for life? Or are they, as a constitutional monarchy and more socialistic, more aware of the impact that micro-preemies have on their society? Should ones neighbor have to pay for your child's care?
If this country moved to socialized medicine I imagine you would see a change in the way resusitation of micro-preemies would be handled. This would vastly change the role of the neonatologist/pediatrician in care of preterm infants.
At that point I would see a report such as the Nuffield report given more weight.
Anonymous said: "For the parents out there, it is much easier to say "I would have liked this or that" at the time, but not knowing what your child's life is right now, would you have agreed to comfort care while sitting in the NICU hoping for a good outcome?"
ABSOLUTELY, we requested a meeting with our hospital chaplain who supported our decision to have life support removed following the massive IVH. The *neonatologist* refused. From other parents I've met through this particular NICU, the same thing is still happening there.
While it gives me hope that your NICU practices more humane care, others do not.
To ryn tales who asked for data on extremely preterm babies after early childhood:
This is from Saroj Saigal's data, which is the only study I know of to do comprehesive follow-up in late childhood and adolescence. Unfortunately, her studies on adult preemies are based on self-reports from the preemies themsleves and they have been notoriously poor at reporting their problems in the past.)
At any rate, here is the objective data on this cohort:
gestational age: 27 weeks +/- 2 weeks
At Age 8,
70% had ongoing health problems
58% had cognitive deficits
48% had sensory problems (vision and/or hearing loss)
40% had severe attention and/or behavioral disorders
21% had impaired mobility
17% could not carry out basic functions of self-care (eating, bathing, dressing, tioleting)
16% had problems with pain
44% had multiple areas of impairment
Only 14% of the children were free of impairment
***
At adolescence (ages 12-16):
Average IQ: 89
Special education and/or repeated a grade in last 2 years: 58%
Refs.
Saigal et al. J. Peds 1994, pp.411-7.
Saigal et al. Pediatric Research 1995 # 271A.
Saigal et al.Pediatrics 2000:pp. 325-31.
Prematurelabor said:
"If this country moved to socialized medicine I imagine you would see a change in the way resusitation of micro-preemies would be handled."
I completely agree. FYI, according to the academy of medicine report from July 2006: Last year the economic burden of preterm births was $26.2 billion, or $51,600 per infant.
If all taxpayers, including the Neonatal doctors--- many of whom may be in the highest tax bracket ---had to shoulder a part of this annual burden, they might be less inclined to insist on resuscitation of infants with severe brain injuries, as documented by terry w/2.
This is why I think parents should have the primary right to decide on DNR orders, with or without the 'agreement' of the clinicians.
I have posted the ACOG guidelines for perinatal care at what ACOG considers the 'threshold of viability---at or less than 25 weeks. See my blog
I hope this is of some use to prospective parents or to this discussion more broadly.
Buddhist Mama - the financial costs to this country in regard to extreme prematurity are very dire. This following information was taken from an on-line medical ethics class given by Phillip Pecorino, Ph.D. at a college in NY.
"The hundred highest users of Medicaid dollars in each state are preemies who end up for months on ventilators and end up with cerebral bleeds and extremely lousy outcomes.” To put the costs into perspective, it costs 20 percent more to care for an infant less than 750 grams than a heart transplant surgery and three times more than a serious burn victim. The exceedingly young, in fact, eclipse the seriously old in medical costs, even though the elderly tend to be singled out for disproportionate level of care they need.
This may seem like a very ridiculous question, but, if you have statistics and research that show just how poorly 23-25 weekers are doing, why are neonatologists giving us the choice to save our babies? I for one did not even think my twins had a shot when I found out I was 3 centimeters dialated at 23 and 2/7ths. It wasn't until they told me they routinely treated 23 weekers at my particularl hospital and called the NICU for a consult that I even knew I had a choice. It's not like this was my only shot at having children and I had IVF and I was begging them to override what they normally do and try and save my twins. Why do we get completely different statistics from the neonatologists and developmental specialists before delievery and in the conversations and family meetings after their arrival? Why do we see pictures of former 23-25 weekers posted all over the bulletin boards, and witness them come back to the NICU and visit? I did hear about those who didn't do so well, but we were told many of them had large brain bleeds, or were very sick but parent's chose not to discontinue support. We definitely did not hear any of the statistics Helen cites. I know many times they provided us with their own NICU graduate results, as opposed to the national ones. Could it really be possible that these statistics are THAT off from other NICUs? I just think it's hard to believe that NICUs like ours are purposely deceiving parents about outcomes. I saw first hand their compassion and desire to do right by babies, even in times when their opionions comepletely differed from that of the families'. If this research is accurate...that nearly all 23-25 weekers have pretty devastating outcomes, why are developmental teams who follow NICU graduates so involved in helping parents make decisions that do not universally call for the end of treatment for 23-25 weekers. If they experience this devastation first hand in follow-up clinic, why aren't these reults being reported to parents and neonatologists? I think I will contact the developmental specialist from our NICU and see what she has to say about all of this. Maybe I can get my hands on the studies and results she reported to us when we were making choices.
23weektwins'mommy wrote: "This may seem like a very ridiculous question, but, if you have statistics and research that show just how poorly 23-25 weekers are doing, why are neonatologists giving us the choice to save our babies?"
Yet another reason why I started this blog. The truth is not being reported.
There are many reasons:
parents under reporting issues
doctors dismissing issues
parents being blamed for outcomes
media only reporting on one side
blah
blah
blah
But, in *MY* opinion the 2 main culprits are:
1. Most follow up studies ONLY follow the child until age 2. Many diagnosis' are not made until long after that age.
2. Some (not all by any means) OB's and neo's feel the edge of viability is up to them to decide.
In all fairness, some neo's save those babies because the parents request it. This has been covered on some of the blogs of neos.
With my own experience, we had both. When my water broke at 23.0 weeks with my daughter, the first neo told us to let her die because she would never be "normal". He told us about all of the issues she may face if she was born before 26 weeks.
When we changed hospitals the neo there told us that she had a great chance of being "normal".
One very important aspect that the first and second neo left out was the amount of pain my precious girl would experience, both during the NICU and then the rest of her life.
When you hear back from the development specialist, I would love to hear what they have to say.
PreemieExperiment covered it well, but let me add a couple of observations as well. .
It is widely assumed that if a preemie does *not* have a brain bleed, they will be normal. This is SO not true. One of my twins sailed through the NICU, little vent support, few complications, no brain bleed. We brought her home without oxygen, no monitors, feeding well. The only meds she was on, were baby vits. She interacted well, smiled on time, talked VERY early. .
At age 3, she was diagnosed with mild-moderate CP, she struggled immensely with social issues, and organization. She has an extremely high IQ, but has struggled with school. She attempted suicide at 14. I took her to one of the top neuropsych people in our state for a full work-up, and the dx was high functioning autism (aspergers) as well as non-verbal learning disorder (NLD). She is an example of a micropreemie who I believe was neurologically damaged or as I call it, disabled due to neonatology-induced brain damage.
In addition, the photos of all the success stories, or the NICU reunions - I wonder how many parents of kids with disabilities participate in this? Many families I know of whose kids are very disabled, do not participate in those kinds of things, as it is simply too painful. The grieving process when you have a child with severe disabilities is on-going - to celebrate this, is kind of being thrust into some kind of schizophrenic-like state. It's best to avoid it.
Then, there are the miracle things - the Children's Miracle Network Telethon, that appears to carefully select which babies and families they will feature. Our NICU also has a girl who was born at less than one pound, who is developing normally on their website. Interestingly, this girl went to school with my girls - the hospital ignores the 5 other preemies in the school from their NICU who survived with disabilities, and holds up to the light the one that is doing well. The public thinks from things like this, that all preemies do well.
So yes, there are a multitude of reasons why the picture you were given was a rosy one. .
Why the disconnect, 23-week twins mommy asks?
As you have seen, this is multi-factorial. Terri and Preemie Experiment have given you some of the most evidence-based answers.
But I will give you my "opinion," as a result of working as a nurse in a VERY GOOD NICU for 18 years.
There is "the culture of the NICU," at least at mine, where people are taken up with rescuing, resuscitation, putting out fires, and don't care quite so much about the long-term outcomes. I have heard a nurse say, "Let us just get them out the door. I don't care what happens after."
This could be viewed as gallows humor--such as "I hope that patient doesn't die on MY watch."
Or it could mean that that RN really didn't care what happened, as long as the kiddo got through his NICU course alive.
I have said many times that docs who took care of Vic rarely ask me about him. Nurses do ask.
Our medical director has insisted upon a follow-up clinic. Before him, (4 years ago?)we didn't have one. This same medical director collects data and submits it to the Vermont Oxford Network. He has an ex-preemie at home, doing well.
I think another factor is that we have had so little training in ethics. These are largely ethical considerations, and we are not accustomed to thinking about preemies in those terms. We are thinking about them r/t their diagnoses, body systems (lungs, brains), and functions, such as feeding--a biggie. We are also thinking about the technology, and the pharmacology--the inservices have to do mainly with "new products," sharps, lines, stopcocks, suction devices, unit-dosed hi-profile meds, the newest in vents and pumps and monitors.
I can remember 1 inservice on ethics (at the time of the Sydney Miller case), and 1 about medical mistakes. In all these years.
These blogs are great analysis tools. They force us to philosophize, to identify our values and our ethical stances. Not everybody is accustomed to think this way. Even your "professionals" are not accustomed to think this way.
Contact the hospital medical ethics board and ask how many preemie cases are brought before them in a years' time. I'll bet not many . . .
Chris and Vic
You know it's interesting, this discussion has made me remember something my OB said several times as we were grappling with the reality of labor at 23 weeks and what that meant for us and our babies. He kept saying, "You need to make the decision you think you can live with." At the time, wracked with grief and confusion, it didn't really make sense to me. I kept thinking, "I don't know if I can live with ANY of this." But looking back now, I think he was trying to get us to search our values and faith and make choices that would allow us to face our loss without regret. I appreciate that, but I have thought many times that I would like to tell him now that I'm not sure there are any decisions a mother can make in that situation that will be easy to live with.
And the truth is, it has been very hard to live with some of our decisions- no matter how right they seemed at the time.
Yes, Lori,
I can imagine that these posts and your own blog have opened up old wounds. But ask yourself the flip-side question: Do you have real regrets? Over your decisions?
Over the process you used to reach your decisions? Over the support and advice you got from your docs?
I have a "pocket of grief" over a man that I loved who died 6 1/2 years ago. The things I regret are the things I could not control
--the circumstances of his death, the fact that I wasn't there and couldn't get to him (he died in France). But I CAN live with his death because he would have wanted me to carry on; and he found release from some great struggles in his life.
His was an unnecessary death--in France, a doctor must come to the scene of an auto accident before a victim can be put into an ambulance--and the doc didn't come in a timely way. This I regret. It is another of those things I had no control over. What I had control over, my contributions to his life--that I have NO regrets about. In fact, I said a prescient good-bye to him when he left on that trip. It was a good farewell, a summing up of my feelings over time. I even cried during that good-bye, and he bore it, though he hated tearfulness. It is all okay. It was his time, apparently. I cannot control or know when it is someone's time . . . you either.
Chris and Vic
To Lori:
I remember seeing the movie "Sophie's Choice" and crying for days. It felt like our "choices" in the NICU with Ed -- there was no choice I could "live" with, horrible grief was inevitable.
To Terri w/2 who wrote:
"Many families I know of whose kids are very disabled, do not participate in those kinds of things"
Our son Edward is too freaked out by little kids for us ever to subject him to the sensory horror of a NICU reunion.
As to why the real outcomes aren't being acknowledged or discussed with parents and the public...I discussed this issue at some length in a conference presentation in 2004 to the National Perinatal Association.
The title of the talk was "Tip of the Iceberg."
I have turned the PowerPoint presentation into two (huge) Word files that I will send to anyone who wants it if you email me at Helen1144@aol.com
I've seen this powerpoint that Helen speaks of, and it is TRULY AWESOME! It should be required viewing for anyone, nurse, physician, whomever is interested in working in an NICU.
Another aspect that is rarely touched on, but I have to believe has some impact as to the "truthiness" of outcomes has to do with the financial aspect of it. There is a reason why NICU's are popping up all over the place. Perhaps one of the best articles on the financial benefits of NICU's is an article called "NICUs Keep Black Ink Flowing" Tiny Tots Worth Weight In Gold. .by Michael Donnellan, a Respiratory Therapist. The article is quite amazing. Here is a quote from said article:
"Some hospitals in the U.S. today find themselves in a position where their neonatal intensive care units are their primary profit centers and the facilities have become financially dependent on them for sheer survival. In a related area, many neonatal practices have likewise become lucrative, sometimes to the point where the field of neonatology financially props up the more financially challenged practice of pediatrics."
I believe now that the reason our request to have life support removed after our daughter's severe bilateral IVH, was because we were BOTH well insured. Another mother I know who was in the same position, feels the same. Why on earth would they keep a 1.5 pound baby with a massive bilateral stroke and full life support going, if not for some monitary reason. It certainly wasn't in her or our best interest! I believe Ruth Guyer's book "Baby At Risk" also mentions this financial aspect.
Hospitals are businesses, and where in the hospital besides the NICU do you see a patient stay for months? Of course they want to fill their little beds with our ELBW babes, and ESPECIALLY if mom and dad have good health insurance.
Here is what a neonatologist has written about the financial incentives of neonatologists and hospitals:
Dr. Thomas Simpson, writing in
Cambridge Quarterly of Healthcare Ethics 8 (1999): 524-6.
“Neonatology, [has become] the most lucrative practice of pediatrics, . . . [one that has] made many neonatologists very wealthy.”
Dr.Simpson goes on to say:
"Institutions and individuals have rushed to enjoy the newfound source of wealth. The billings, in dollars, are heart-stopping. It has become increasingly common to generate bills in excess of a million dollars for the care of an ELBW infant. . . . Is there any wonder why other caregivers, lawyers, HMOs, and parents question the neonatologist’s motives for resuscitating infants who have as little as 10% chance of survival and a greater than 50% chance of a severe, life-long disability if survival occurs?"
To Helen H.,
Thanks for those stats. Do you have the n (sample sizes)those were based on? I actually read some similar stats - not as comprehensive in two medical texts we bought one on neonatology and one on the neurology of newborns by Volpe. The thing that I was not impressed with at the time (while Ellie was still in the NICU) was that some of the percentages were based on sample sizes as low as 4.
As an organizational psychologist with a background in social science statistics - this did not hold up well with me at all.
I realize there are more and more babies that survive traumatic and premature births. So there has to be studies out there with larger and more appropriate sample sizes.
If you have them let me know. As an organizational psychologist I can't put the results you gave me into context with out the sample size.
I look forward to seeing that. Thanks again for following up on my question.
Kathryn
One more thing.
Just read Helen's last comment. And I agree. I know at the hospital Ellie was born in, the NICU was the cash cow. Insurance companies don't say no to anything for a baby in the NICU. There were people with little bar reader guns that ran them over every single piece of equipment, etc.
I have said this before, but here it is again, the business of prematurity is very big business.
Kathryn
To ryn tales:
The "n"s in Saigals study vary according to the studies but here, roughly, is how it went:
Of 397 livebirths of infants <1000 grams, 179 (45%) survived to hospital discharge. 13 children subsequently died (6 before 3 years of age, 4 between 9 and 16 years, and 3 in the late teens). Five of the deaths were considered severely impaired. Of 166 individuals available, 9 were "lost to follow up" and 8 refused -- of these 17, 6 were severely handicapped.
The young adult data is reported on 166 young adults, 7 of whom were severely handicapped and for whom parental proxy responses were obtained.
AS you can see, the deaths and loss to follow-up of 30 children, many of whom were severely handicapped, skews the outcomes toward optimism.
Their inclusion would significantly change the conclusions of Saigal's adult follow-up studies (the ones by self-report at age 23 years.)
This is one (of many) reasons why I feel Saigal's adult studies do a great disservice to parents and the public.
to ryn tales:
I should have said "Five of the children who died were considered severely impaired."
Pulitzer prize winning journalist Edward Humes has written an moving account of a Los Angeles NICU, Baby ER (Simon & Schuster, 2000). The book illuminated the financial and personal motivations within the NICU that influenced DNR and other decisions.
A recent article in Slate (citing the New England Journal of Medicine) argues that while NICUs are proliferating around the country, "infants might be harmed by the availability of higher levels of resources." Link Here
Helen - in the Saigal study, did I hear that there was a murder/suicide among one of the families whose preemie child was severely impaired?
To Terriw/2 who said:
"Helen - in the Saigal study, did I hear that there was a murder/suicide among one of the families whose preemie child was severely impaired?"
That's what Saroj strongly implied when I came to talk to her and the other researchers and families at McMaster University. Saroj also made a dismissive and snide comment about the mother to me along the lines of "I don't know *what* her problem was! Her son was in a good program."
When I later wrote an article about her research, Saroj would not confirm or deny "on the record" what she had told me earlier (and had discussed in a local newspaper article as well) citing "confidentiality."
However, In December 1994, Cathie Wilkieson, a 43-year-old mother in Hamilton, Ontario, was found dead in her garage from exhaust fumes. Cradled in her arms was her 16 year old son Ryan, who had cerebral palsy and was partially deaf and blind. In her suicide note, Cathie said that she was too tired to go on and could not leave her son behind.
I also wonder how the other post-NICU deaths occurred, especially those in late adolescence among supposedly non-disabled members of this cohort.
To buhddhist mama:
Thanks for the link!
To buddhist mama:
Sorry for the typo mangling your blogging name.
Funny how you never hear any big news stories with starting lines like, "Mother of former 23 weeker preemie,toted "miracle baby" found dead with son, now 16 due to lack of social services and community support."
That makes me so sad. But I can understand her feeling like she had no where to turn too and I also understand being THAT tired. Very sad.
And to the person who said, what's her problem, he's in a good program, they obviously don't understand the amount of care involved 24/7 beyond any day program. I hate it when people who should care use such flimsy excuses to not care.
I wanted to just say thank you to everyone for their comments. I haven't been around much to add to the discussion. Everyone covered exactly what I wanted to say, and more. Thank you!!
I also noticed that we didn't have anyone who was strongly opposed what I had posted or to what anyone said in the comments. Although it was nice to have such a calm discussion (and very informative one too) I'm amazed how everyone with a different view went into hiding. When we post over on the neo blogs, everyone comes out of the woodwork to go against us. Where are they now?
To ryn tales:
According to a friend of mine in Ontario, Dr. Saigal also wonders what "my" problem is since my son is not as severely handicapped as my friend's preemie is.
My problem is simply that parents aren't being told the truth and aren't given choices and services. If they were, I'd go away quietly.
Ryn Tales said: "That makes me so sad. But I can understand her feeling like she had no where to turn too and I also understand being THAT tired. Very sad"
Yes, I think many of us can understand that level of exhaustion and desperation. Several years ago prior to my daughter's diagnosis for asperger's and NLD, I believe I came close. I'm never surprised when I read about parents of kids with disabilities who are successful in a murder/suicide.
Helen wrote: "My problem is simply that parents aren't being told the truth and aren't given choices and services. If they were, I'd go away quietly."
I want to add... I would also like to see better/more honest follow up studies. Then I would go away quietly also. I'm sure my husband would like to have his wife back. (at the very least he'd like a clean dish or 2)
Disabilities can come at any gestation.
My twins were 35.5 weeks and have special needs.
My first trip to the labor and delivery was at 16 weeks, the second was 21 weeks, the 3rd was 25.5 weeks and the start of an 11 week hospital stay. The first 10 was for treatment of preterm labor, the 11th was post op.
I was the first patient in that particular hospital that was given Terbutaline via the T-Pump.
They could never send me home because the contractions would break through and they would have to bring me back to the labor and delivery to get mag sulphate.
I never thought I was going to walk out of that hospital with one baby, let alone 2. I found out later, that everyone else thought the same. Because I was an RN, I knew all the horrible things that could happen.
At that time, everyone I knew that had twins had them 32 weeks or less, one 24 weeks that didnt survive.
So when things started going bad early, all I could do was pray for one more day, each day, when I would wake up in the morning.
This was back in 1990. I made it through because after all of those contractions, I never dialated.
They both had brief NICU stays of 4 and 10 days. They were over 6 pounds each.
At that time 24 weeks had a 10% survival rate, 28 weeks-60%, 32 weeks-95%.
Everyday I wondered if I was going to have to make that decision.
As each week went by, they told me the chances of survival.
When 32 weeks came along, everyone that came into my room stated that is was *Safe Time*.
Anyway, back to the disabilities, my twins, daughter and son, had speech delays and learning disabilities.
They had their first IEP when they were 3 years old. They were in a special preschool. They were diagosed with expressive/receptive language delay. One of them ADHD.
6 years later, after 5 different psychiatrists, residential treatmet, They were finally diagnosed PDD-NOS (autism spectrum), Schizoaffective disorder, phonologic disorder (my daughter, ADHD (my son).
I know, alot of diagnosis, but they are high functioning, in HS, functioning at their 11th grade level, and both want to go to college.
They have come a long way, but I am still setting up a special needs trust to protect their future because of the Austism spectrum.
Alot of parents are setting up special needs trust for their children with special needs now.
Parents should be informed that these special needs trust do exist so they know their children will be taken care of in the event of their demise.
I did see 2 preemies, one 23 week, one 25 week that went home the same week as my twins.
I dont know how the 23 week child did. The 25 week child went to the same pediatrician that my children went to. They didnt think that child would even walk. I saw him 3 years later running around the waiting room with his older sister.
High risk pregnancies and non high risk pregnancies can have disability outcomes.
A close friend of mine had a child with CP at 40 weeks, and is totally disabled 10 years later.
The pregnancy was uneventful until that last week.
So the thing is, you just dont know.
The media doesnt help by glamorizing the preemie thing. It misinforms parents.
I believe the patients should be informed to any possibe outcome and that the parents do all their reading and research to be prepared to make a decision if they need to do so.
Dear PE,
I believe the situation may be different for those of us who live in Australia. In our situation we met the Neo on the day I arrived in hospital in early labour at 24.2 weeks and we were provided with the survival statistics and the possible outcomes. It was anticiapted intially that my labour would be stopped and would remain on bedrest for the next 4 weeks - however things took a sudden turn and the boys arrived at 24.6 weeks.
Recently in Australia there have been heated discussions on the resuscitation of extremely premature babies. This has roused a lot of anger in some sections of the "premature baby community". This is a news release regarding this issue... http://origin.abc.net.au/news/items/200611/1781670.htm?act
However, as the mother of twin boys who may have been affected by these resuscitation guidelines I am pleased to see that the communication pathways are opening more and more between the medical fraternity and the families of these babies. It can only benefit the longterm outcomes for families and their children if they are provided with relevant and up to date data.
Kind regards,
Lisa
mum to Mitch & Harry
ex 24.6 weekers
now 2 1/2 years old
I am coming into this discussion late, but would still like to have a brief say...
I think resus limits are a pretty good idea. Even though my daughter was born at 26 weeks, I think my cut-off would be that, if I got pregnant again. Maybe I'd lower it to 24-25 weeks...but definitely not lower than that. And that's my own opinion.
I think the points made by everyone here are quite valid. Particularly those who mention that gestational age sometimes seems to play very little part in the severity of outcomes (although research indicates otherwise obviously). From personal experience, I just feel plain lucky that we got out of the NICU and 'caught up' by 3.5yrs and now have a diagnosis of Asperger's (Autism Spectrum Disorder).
The 33 weeker of one of the other Ronald McDonald house Mum's went to his 'home hospital' with paralysis down one side of his body, the reason was still unknown before his tranfer. It was so sad to see this big 33weeker suffering so much more than my scrawny, transparent 26 weeker. The other 26weeker in our Level III ICN room didn't make it after 12 weeks.
It was hard to pass her parents in the cafe, taking my daughter back for a 'well baby' hearing checkup, seeing the tears and the glares they sent my way; not because we didn't get along, we were good friends, but because after only 9 weeks we'd been fully discharged...and they had nothing left after 12 weeks but some sad memories and a few tiny baby clothes.
Prematurity of any gestational age seems to be a huge gamble. No Dr can predict the outcome for any baby, but being born early makes those predictions even harder.
Parents just need to be better informed. We need ALL the information, early on in our pregnancies. Birth classes and OB-GYN's should be made to make us aware of the possibility of early births, and the problems that could stem from it. I know it's the PC thing to do, not to scare expecting Mum's too much...but let's face it...we need to be scared. Sometimes fear is a great motivator for gathering more information. And the better informed we are, the better our lives and the lives of our children will/can be.
Just my personal opinion.
So, finally, what does it mean, in practice, to have gestational age limits?
Here is my understanding:
You are 20 weeks pregnant, and at this very important milestone visit to your OB, you have "the talk" about what-would-happen-if . . . The doc tells you and gives you to take home, a chart about outcomes, odds and statistics for 23-, 24-, 25-, 26-, and 27-and-up preemies. S/he gives you the Nuffield guidelines, and the AAP guidelines . . . with his/her own recommendations. The OB asks if you want to be put in touch with a preemie parent (of a 23-weeker, or a 24-weeker, etc.). You, the pregnant patient, are expected to formulate your own guidelines, and be ready to discuss this in 2 weeks' time--to put it in writing perhaps, and send it to your OB's office, to be placed in your medical record.
You deveop a condidtion, sepsis or HELLP or toxemia, that threatens an early birth. Will you decide to be hospitalized on bed-rest, in keeping with the guidelines you have formulated and that are now in your chart? (Remember, if you are admitted to the hospital, some decisions may be taken out of your hands.) Or will you agree to be on complete bedrest at home? Or??? Imagine the time is 25 weeks into your pregnancy . . . what will you do?
Your partner and you are on the same page? Or have you made some compromises? Or ???
You are 25 and 3/7 weeks pregnant and your labor begins. You will be offered steroids to mature your baby's lungs. What will you do? How many courses will you take, if any? Have you done your homework on antenatal steroids?
Do you have a perinatologist on board at this point? Have you had a good talk with him/her? More than one? What questions will you ask? What do you want advice on?
Your labor seems to be progressing, and the OB is saying s/he thinks it cannot be stopped.
You need to decide on the wisdom of a c-section. What is your decision? Do you feel you are an equal partner in the decisions? Have you gotten enough DATA (two sides of the story, pro and con) and more than one OPINION
(OB and perinatologist and your partner's opinions) about this and all the other decisions attached to it?
Your baby is born by c-section at 25 and 4/7 weeks, and is whisked off to the NICU. The baby needs ventillatory support. The baby is septic. On day #3 the head ultrasound shows a Grade III bleed. What is your decision? Continue full support, a DNR, or ??? What info do you need to make this decision?
Do you understand the implications of a Grade III bleed? Has a neurologist been consulted--looked at the head ultrasound? Do you want to confer with him/her? Do you want to know how other ex-preemies with Grade III bleeds turned out at age 2, 4, 6, 8, 12, 16, 21? Can you get that info from your neo?
Do you want to be in contact with the hospital medical ethics board, regarding gestational age resuscitation guidelines?
On day 5 your baby's blood gases worsen, and ventillatory support needs to be increased. He is being treated for sepsis, and that problem may well be resolved. Does this affect your decision? Have you made any timelines for improvement/worsening conditions? What does your neo advise? What does the respiratory therapist say? Have you been shown the chest x-rays and received an interpretation? What does the bedside nurse say about your infant?
Your baby is still on IV fluids exclusively. You ask about it, and the neo explains to you when and why s/he will move to introducing small (trophic) feeds. What does this mean? Late in the week, the doctor tries trophic feeds, but the baby doesn't tolerate them.
Now what?
Is the Grade III resolving? How often will a head ultrasound be done, in order to answer this question? Is there any other brain issue (periventricular leukomalacia, PVL, predictive of cerebral palsy, CP, about 80% of
the time)? How is your baby's vision? Hearing? (The hearing screen is actually usually done close to the time of discharge.)
Is you baby being weaned off the vent? How are the gases? How are the chest x-rays looking? Are they improving? What are your child's oxygen requirements?
What meds is your child on now? What are the risks and benefits of these meds? Is anyone suggesting a course of steroids to wean from the vent? What does the respiratory therapist say?
Are you able to have frequent care conferences with the entire team?
Do you have one nurse, the OT, the admitting neo, that you feel very comfortable with? Are you getting all your questions answered? Are you able to talk to someone at every visit? Or as often as you desire? Have you kept a list of questions and answers, or a diary?
Have you Kangarooed yet? Has the father Kangarooed? Will the staff take extra time/pains to get you established/set up with Kangaroo Care? How does Kangarooing affect your bonding, your decision-making, your partners'?
Do you imagine or play out in your mind a scenario where your child wants to die, and you allow it? Where your child comes home in 90 days, needing oxygen and a monitor? Do you play out an imaginary scenario with you being unable to return to work, because no daycare will take your child who is on oxygen and a monitor?
Do you play out a scenario where your child is mildly, moderately, severely affected? Do you begin to do homework on developmental milestones that will tell you the degree of impairment--"missed milestones"? Do you know about Birth-to-Three programs? Will you want a Birth-to-Three assessor to come to one of the later care conferences, just before discharge?
Do you have a ped who is following your baby's course in the NICU in an ongoing manner, and will come to care conferences? Or consult with you by phone?
Your baby has a roller-coaster event---takes a step backwards and developes sepsis (again). He needs to go back on the vent. Did you learn about his in a timely way? About the antibiotics that will be used? About the seriousness of the infection? Is the plan of care changed? Do you agree with the "plan of care"?
Do you have a good feeling, that people are being honest and open with you? Or do you have a not-so-good feeling, that you are NOT being kept up to speed or that decisions are out-of-your-hands?
If you have/had a complaint, what are the avenues to resolve the issues? Does the social worker contact you from time to time? Would you feel comfortable talking with him/her? Do you know who the medical director of the unit is?
Do you know the name and have contact info for the manager of the unit (nurse)?
Is there a follow-up clinic? Can you be put in touch with other preemie parents of 25- to 26-weekers,whose child was in YOUR NICU? Do you want that contact
now, even if you didn't before?
Do you want someone to predict your baby's future, in keeping with what other 25-weekers with Grade III bleeds and several episodes of sepsis, have experienced? Or would you rather NOT KNOW? Do you think that you can accept whatever the future holds, or do you want to be prepared, and perhaps have a better chance to control yours and your family's future around the birth of this child?
Do you have the support and the economic means to raise a child with mild, moderate, severe sequellae? Can your family get by on one income? Can your marriage survive, if you and your partner are not on the same page about this child, at any point now or in the future? Are you clear with one another about how much you can compromise? How much your values are the same or different about this issue? Are there other siblings, or will this child's outcome influence you to NOT have other children, if he turns out to be severely involved?
* * *
I am sure I have not spun out all the implications . . . but I tried to spell out the details.
Chris and Vic
chris and vic
all but one. If you choose to "let your child go" I call tell you it will also have a huge affect on your sanity, your family, your marriage, the baby's sib(s)
Follow up studies for preemies is very poor. So lacking are follow up studies families where the baby has died. And even if they weren't, I'm guessing it would be hard to get honest data. Grieving after a certain amount of time is not always considered socially acceptable. I guess in some respects, our life is arguably "easier", but we didn't dodge as many issues by having our baby(ies) die than I originally would have thought. And now we have new ones.
I'm not saying "don't let your baby die", (I think I might choose to let a 24 week baby with a grade 3 bleed die, for example) but only fair to point out that opens yet another can of worms.
sce
If you choose to "let your child go" I call tell you it will also have a huge affect on your sanity, your family, your marriage, the baby's sib(s)
Studies have been done finding that families who let their children go are usually at peace with their decisions. I remember one specifically by a social worker, Carolyn Daniels, in Canada.
Hold on a minute.
I'm sorry, but one of your big critiques of longterm studies on the effects of prematurity is that it is hard to get "honest" appraisals from the parents and preemies themselves. You talk about all the time the societal pressure to appear as though everything is fine even when it may not be quite so "fine."
I am not privy to any of these supposed studies that show bereaved parents to be "at peace" but I would challenge they would face similar difficulties in acquiring accurate data. As anonymous pointed out, there is also tremendous societal pressure to grieve the death of a baby quickly and to move on. And certainly voicing any regrets or lingering doubts about any life and death decisions you made is highly discouraged, and potentially would subject a parent to some pretty harsh judgment. I personally cringe every time I read the parent of a surviving micropreemie say things like, "I couldn't live with myself if I didn't do everything I could to save my baby." or "I don't know how any parent can just let their baby go." Statements like those just reinforce further that there is no room in the public discourse for parents like myself to openly discuss and share the agonizing questions and decisions they still live with.
Not to mention all of the potential variables in a study like this. Under what conditions did these parents "let go." Was their child terminal? Was there any hope of survival? How long after the death of their baby were these parents interviewed? And how exactly do you define "at peace." Able to live a productive, happy life? Not in the loony bin?
anonymous raised a good point, clearly from personal experience, and I don't think it should be dismissed out of hand.
To Lori:
I agree, I *am* a big critic of self-reports, and these studies do involve interviews and self-reports.
I think a better way to conduct such a study would be to look objectively at family outcomes following NICU decision-making. The outcomes should include the marriage, the siblings, future children and opportunaties to have them, financial outcomes, health of parents outcomes. My dear friend and mentor, Dr. William Silverman, was constantly advocating that such a study be done.
Chris and Vic.
Wow, what an amazing scenario. Very well thought out and written---and great that you put the child at the 25/26 week cusp. Also, what an amazing NICU you describe. Although our NICU touted the principles of family-centered care and NIDCAP, it did not live up to either of those practices. We had to fight to kangaroo care most days for 77 days, even though our kids did very well for most of their stay. There was very little effort to reduce noise and light in the NICU, and developmental input we had was minimal---some suggestions printed on a piece of construction paper that nurses tended to ignore most of the time. We were not consulted or (sometimes) not even informed on many decisions regarding treatments, care, etc for our 26 weekers. I think it is very difficult for some NICU's to practice what they preach and to live by the standards that you outline so well on your post.
Chris,
Your comment on March 19th at 9:28am... so very well said!
I have so many posts that I have started and saved in drafts. One of them was almost done, entitled "where do we go from here". Um... your comments put my drafted post to shame. Very well thought out!! I will be revising mine and checking with you at the time to see if I can quote your comments.
Another one in drafts, that I started after your comment, is about mothers and fathers (or partners) being on a different page. I will be working on that one soon.
I am glad that people who have been there, in the awful position of making these life-death decisions, find my problem-solving proposals/questions helpful. I find it helpful to have a plan and spell it out for myself, in matters of importance. I do for myself what I suggest--that is, play out best-case and worst-case scenarios in my mind, ahead of time. I kind of role play in my mind.
I respect you who have been there. I am NOT Vic's biological mother, and I didn't have that decision to make at that time. (I had other decisions to make about his life-death towards the end of his first year . . . but that is different.)
I say that I would "let go" and I hope that I would follow my values, as stated, if I ever was in that position.
Buddhistmama, I am sorry that your NICU fell short. Mine does, too, at times. Simply put, we FAIL to be family-centered. We set up our work to suit ourselves. We value efficiency more than the sensibilities of the families. We consider the NICU our turf--and the family doesn't feel it is their turf at all--quite the opposite, it is a hostile environment to them, at least at first. And to their infants??
S, you had the guts to start a blog, to write considered posts. The response is huge. Your commitment is huge. Don't put yourself down . . . You have given the preemies and their parents a voice and a forum--it's all good.
I wait with bated breath for your posts on parent-partners being on the same page with decisions. That is a biggie, seems to me.
Chris and Vic
For Lori, (if you are even still reading this)
"And how exactly do you define "at peace." Able to live a productive, happy life? Not in the loony bin? "
I liked all of your response, but this part was my favorite.
One point I tried to make that didn't articulate well was that even if you are "at peace", your child was 21 1/2 weeks with a horrible brain bleed, or whatever, and you know it was absolutely the right thing to do, because of grief, you STILL may have to face issues that go beyond feeling really sad. Those issues may include marital issues (besides just divorce) issues with trying to grieve and parent surviving children, feeling like your living children are getting cheated out of your attention, and a "normal" family life, b/c you are so wrapped up in grief, impaired memory, difficulty returning to work, I know many bereaved parents on long term anti-depressants, difficulty relating to other young parents; I can think of several more, but I want to keep this reasonable length. My sister noted that the first year especially, "parenting" my dead babies seemed to take about as much work as parenting living ones.
Long term, who knows? It may well be that if one did a study of the long term outcomes of families whose babies died, and compared against long term outcomes of families raising severely impacted children, standards of living, and overall wellbeing may be favorable for the former group. But knowing what our family went through, and continues to grieve for, I don't want to take that for granted. And even so, I cringe at the thought of a grieving family not having the long term impact of their loss on their lives acknowledged by their health care team "because you did the 'right' thing".
sce
After reading through all this, I'd just like to point out that a person can have full-term low-risk pregnancies and have kids with ADD and autistic spectrum disorders. I'd really like to see data on whether those conditions are more prevalent in pre-term babies, because most of the kids I've gotten to know while parenting my own sons (both on the spectrum, 1 with ADD) have been from full-term low risk pregnancies.
I went into labour unexpectantly when I was at work, and gave birth four days labour via emergency caesar, to a beautiful bouncing baby girl, just 27 weeks old. She managed to escape the gamut of complications typical of being extremely premature, or at least we thought she did.
A week before we left hospital we found out she had lost her hearing. Now, 12 months later (she was born 20 May 2007), she has had a cochlear implant and is doing great. She has started turning to her own name and recognises environmental sounds.
We were counselled when we first arrived in hospital about the risks of preemie babies. Like most other mums of first time preemie babes, I had no idea what was in store. The media does nothing to help the perception that it's just like having a small baby who will grow fat enough to take home sooner or later. Not the case.
I wouldn't wish this experience on my worst enemy. Not now, not ever. All those philanthropists who say 'it will only make you stronger...', yeah, for what? I was pretty damn strong to begin with.
All that aside, one good thing has come of Soraya's deafness. Next week I will be making a guest speech at the Sydney Cochlear Implant Centre where she was implanted, and guess who'll be in the audience? The PM ... little old me ... What a great opportunity to influence the continuation of govt. funding for a brilliant cause. Gosh, wish me luck! By the way, this is an awesome thread. (Check out my baby girl, I am so proud of her ... www.sorayawyndham.blogspot.com)
I personally think it is absolutely irresponsible for the medical community to save these micro preemies. I am the mother of 24 weeker micro preemie twin boys. My one son died after 19 days of suffering and my other son spent a total of 9 hellish months in a NICU and 3 additional months in a Rehab center. He is home now and the hell is still not over with. It is never ending. I wish I had known DETAILS about what could happen instead of getting some meaningless statistics. I love my son so much but I would have made a totally different decision had I only known what was in store. I would have made a dignified and kind decision when both my sons were born and spared them all the agony not to mention the agony that my family has gone through and is still going through this very day. I am sorry but micro preemies are just not meant to live. Nature has dictated that and we are going against nature.
I had two pre term babies. One at 21 weeks and our daughter passed away during labor and the other was a 24.3 weeker.I was in labor and baby was in breech. I had very less knowledge on what its is to deliver a micro premiee. Doctors said vaginal delivery will be very risky for the baby and he may during delivery and a c-section was recommended. They told us the chance of survival was 40%. My husband and I did not want a c-section because with a 40% chance for survival we did not want do a c-section because if the baby did not survive we cant plan the next preg for a long time.So we continued waiting for vaginal birth and suddenly baby's heart beat getting very low and one of the oB said that he will die if we did not do the c-section.Parental emotions flooded us and we agreeded for c-section. Baby was born and after 4 th day he had grade 2 brain bleed. They explained us teh situation and we were googling to see what was the impacts of a baby with brain bleed and impact of a micro preemie. My husband and I could not sleep that night in the hospital. We dint want to see our child suffer the rest of his life with disabilities like blindness/deafness/CP etc. We requested if the life support can be removed but the doctor's denies saying he only has a grade 2 brain bleed which is nothing and he may have some disabilities. We feel it is the parents who need to decide whether they can face these challenges along with the baby by resussitating them.. He is still in the NICU, as much as I love my baby I cant imagine he being majorly disabled.I strongly feel doctors should be listening to the parents while taking these decision.Also Parents should take well informed decisions , if possible educate them in the begining of second trimester if they have a risk of pre term labor. They can think and do teh research before hand instead of taking emotional decisions.
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