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Comments

Elizabeth de Jong

Hello
Our third child, Lucas, was born at 24 weeks in 2009 and doing beautifully. My husband is Dutch and at the time Lucas was born we were told that Dutch hospitals do not resuscitate below 26 weeks - I'd be interested if you can confirm this.
My main question, after watching your excellent documentary, is how is Mathilda doing now? (Assuming some time has passed since you finished making the programme.)
Thank you

Asha

@elizabeth the dutch guideline for treating very premature babies changed just last autumn. Doctors are now actively treating 24 week old babies (not 23 week old babies though), although they strongly feel they should not do anything that's technically possuble. In the previous guideline, active trwatments of 25 week olds was propagated under the same reservations. From what I learned from my own gynaecologists when I was pregnant myself (in 2007 and 2010) I know that in reality, most doctors chose only to treat 25 week olds if they were strong enough to breath on their own at least for a couple of hours after birth. The same now goes for 24 week old babies. That means that if your son had to be resuscitated at birth, in the Netherlands he probably wouln't have survived.
More about the new guideline (in dutch):
http://medischcontact.artsennet.nl/Tijdschriftartikel/Leven-met-24-weken.htm

Asha ten Broeke
(science writer and mother, from the Netherlands)

Glyn Elwyn

Dear Adam
You need to know about Angelo Volandes in Boston. He is working in this area as well.
Glyn Elwyn

avolandes@post.harvard.edu
http://www.ethics.harvard.edu/people/show-bio/all/256?layout=showbio

Charles

Dear Adam,

The use of primary material such as the above linked studies was not directly obvious in the documentary and I am pleased to you know that you did use accurate source material. However, I would like to know how you can further justify the use of the 9/100 figure.

On its own, this figure seems to be true but it includes the deaths in the delivery room. As the documentary makes the point of cost of care multiple times, of the suffering and the prolonging of agony that people cannot really understand unless they have been there, then it should only apply to the babies that are admitted to neonatal care / NICU. The EPICure 1 study claims that only 39% of the birth showed signs of life at 23 weeks and, of those, 50% died in the delivery room. Of the babies admitted to NICU, ~20% survive at 23 weeks.

Can you please explain why you chose to use the 9/100 figure, when the 20/100 figure (1/5) is the accurate one for the views that were expressed?

Thank you!

pin

Charles,

As you say, the data clearly states that 9 out of 100 babies born at 23 weeks survive long term (greater than 6 years). Although you would like those babies who die in the delivery room to not be included in this depressing statistic, I don't think that would be very wise.

I believe it is important to consider what the baby born at 23 weeks goes through in the delivery room. Resuscitation-which is a horrendous experience- happens in the delivery room. Only stable intubated babies would make it to the NICU. Those babies who do not survive resuscitation still deserve to be included in the total statistics.

Neil Marlow

Dear Adam

Thank you for giving us your sources: they are somewhat out of date and don't precisely give the correct prognosis. It would have been helpful to have perhaps discussed these issues before moving on to repeatedly reiterate them during the programme. As neonatologists we have to deal in these data everyday and how they are presented and interpreted will drive the discussion. It also doesn't help to describe attempts to stabilise babies in such emotive terms.

Bill Silverman prefaced an article about our early report with the quotation "is the glass half empty or half full – it depends whether you are drinking or pouring". It seems you have taken up one stance. It doesn't help to quote data from areas where many of the babies were not actively intervened with (in Charles' response above).

It is true that in 1995 we reported as you quote but we need to ascertain which babies had active intervention which was not really available in the EPICure study and the 1 in 100 statistic misinterprets mild disability – which refers to minor visual impairments and mildly depressed developmental scores which I don't think we should be using as reasons for writing off children. The key statistic is of those babies admitted to NICU of whom 6 in 100 survive without serious disability.

When we went back in 2006 we found no significant increase in survival, but survival had increased to 20% (see our website), we know that active intervention only occurred in about 85% and we know that survival is much higher in large perinatal units (by over 80%) - making your pessimistic assessment somewhat out of date. These data have been presented widely to professional groups. This reflects the fact that intervention is much more likely at this gestation whereas in 1995 it was much less likely to occur.

I cant give you chapter and verse on outcomes as we are still analysing those data but at 3 years it doesn't look as if the outcome is any worse for survivors. The hospital based outcomes for my present hospital were published a couple of years ago showing close to survival rates reported by the Swedes in the Express Study which would fit with increased survival at level 3 Neonatal Intensive care Units (given the imprecision of small numbers from one hospital). Clearly if 1-in-5 is surviving without serious disability (as seems to be happening in some centres) then your report is completely inaccurate in this area. The factors which influence outcome will very much depend upon the surroundings in which the child was born; we use the 1 in 100 statistic to refer to babies at 22 weeks, and will not intervene unless pushed very hard as I agree totally with the documentary that this would be unacceptable.

The points you make about family support and support for adults were however very well made and I can support whole heartedly; if we are to improve the outcomes at the advancing edge of gestations at which survival is increasing then such support is mandatory and it is a scandal that it does not occur! Of course very many more children have disability from conditions other than prematurity and find it equally hard to access services - that is a much more relavant statistic, a national shame and scandal, than for the very few sub 24 week babies that have problems.

The challenge for modern medicine is to reduce the impairment rate by understanding which factors lead to them and intervening to stop them. That the Dutch would not have bowed to pressure and changed their policy if we were not doing this, is somewhat more relevant than the fact they wont resuscitate at 23 weeks, than was given credit for.

I think as society we still have to get this area right. In the 80's it was babies <1000g birthweight, in the 90's it was babies born at 24 weeks, now it is babies born at 23 weeks. Drawing a line in the sand is truly difficult for doctors and parents alike and we must make individual decisions as to what is in the child's and the families' best interest. This involves difficult conversations that your programme has highlighted appropriately, even in if based on the bleakest of prognoses from the mid-1990's.

Charles

Dear Adam,

Many thanks for your explanation. I have to disagree with your conclusion concerning the delivery room. My son was born at extreme prematurity and resuscitated. I witnessed him being intubated. I would say this is the very least that you would expect for anyone to try and save their life and I agree with Neil that you are describing it far too emotively. Regardless, from the 1995 data - 39% of babies born at that gestation show no signs of life at birth and, as we were informed quite clearly, there would no attempt at resuscitation. This still means that your figures are 39% too high (9/61) and should be closer to 15% survivors from the 1995 data. Adding to this the information from Neil concerning the Epicure 2 data your data is clearly out of date and the figure may even exceed 20%.

As I have been one of the parents who was told the survival chance of their son before birth was bleak and that they would not resuscitate if there was no sign of life, I am thankful that I was given the correct statistics by the neonatologists at the time. As your figure has been published widely, the few who are in the unlucky position to have 23 week old preterm births will have it at the back of their minds, affecting that experience and potentially their decisions.

Will you do anything to correct this misunderstanding or do you still believe that your figure is correct?

Sadie Mumford

The statistic that only ..... 1:9 of those that survive are able bodied, thereby 8 have disablement put upon them, therefore suffering, is appalling. It is doctors playing God because we have the ability to put a tube down and attach to a respirator. With these statistics coldly before them they must respond as a caring human and that is to not force on this preterm baby pain, operations, difference to others and particularly when it known that 'difference' in a child causes family breakdowns and when it known that most 23 weekers are born in UK to low socio-economic mothers this is compounding poor reasoning for forcing survival. Also now research has told us - babies treated in SCBU have a lower pain threshold than the 'norm' because they are overly sensitised to pain by the care/treatments required for medicine in such a Unit. If the newborn cannot breathe spontaneously then leave for nature to reclaim. Ours is not to overpower or disregard nature.
The other part of this whole for the Health Service is the monetary cost. If people want the baby maintained artificially then they should contribute to the costs after the first 10 days and so on when further care required over the years due to poor formation of the person due to imbalance of gases or generation of the body outside of the mother. This is the same emotive quandary as presented by hyper-expensive cancer drugs - should 1 person's care that is only putting off the inevitable take the money that would treat 50 patients that will recover. If a person wants that few more weeks then pay. If the drunks littering A&Es every w/e were told to pay for their care then they might act more responsibly for their futures and not be the future statistic in the liver disease Wards at great cost. At present we have in UK a very UNegalitarian health service because of misguided sympathy also misuse by many and we are all the losers.
If less people misused it then there would be more money and time to assist and advise 'at risk' pregnancies and fewer 23 weekers to be part of these disturbing statistics.

Karen Meuller

Dear Adam,

I am the mother of a baby boy born nearly two years ago in the U.S. at 23 weeks 0 days, weighing 645 grams and measuring 28 cm in length. We adopted him; his birth mom is family. Before Andrew was delivered in an emergency C-section due to his mother's severe hemorrhaging, the doctors told her the baby had a 50/50 chance to survive. They didn't tell her the odds were such only if he made it out of the delivery room; they meant those were his odds, period. This was a level III NICU (Ohio State University Medical Center in Columbus, OH). He was transferred at eight days of age to Nationwide Children's Hospital, a level IIIc NICU in the same city, when it became apparent that he had a large PDA that wouldn't close (the duct in the heart that normally will close with an infant's first cry). He had his PDA ligation there. That hospital has a 63 percent survival rate for 23-weekers presently, ever since they developed a program called the Small Baby Guidelines that they use for babies under 27 weeks. Granted, babies aren't born there, so their numbers should be higher than average. No delivery room statistics there to bring them down. And yet, 63 percent is a good rate, even without the delivery room numbers. 50 percent at the other hospital, for a boy, especially, at barely 23 weeks, sounds pretty good too. These are excellent hospitals, but there are many other hospitals in the U.S. that also regularly revive 23-weekers, and some, like the ones Andrew was at, also resuscitate 22-weekers. Sadly, most of the 22-weekers do not pull through, but I did meet one smiling toddler born at 22 weeks 5 days who was running around at our NICU reunion last year. It's true that the majority of babies born at 22 and 23 weeks may have some delays, but that isn't so in all cases.


Just this month, Andrew was tested on the Bayley III Scales of Infant Development by our Early Intervention team. He tested in the normal range in every category for his actual age, when compared with full-term babies who will be 2 in April. For his adjusted, or "true" age, he was above the mean in everything, his highest score being receptive language, where he's in the 95th percentile. I give you that score because Andrew does have a disability--he suffers from moderate to moderately severe hearing loss, probably caused by the early antibiotics he needed. But he hears great with his hearing aids and has really benefited from his Early Intervention speech therapy and a language-rich environment at home. He loves books more than any toddler I have ever seen and sometimes brings us as many as 50 a day to read to him. At 19 months corrected, he knows 14 body parts, a handful of numbers, letters, and colors, and a few shapes and sight words. He has a wonderful attention span that everyone raves about, and is just the sweetest, happiest, "easiest" boy around. His therapists have told me they could stay all day with him, but luckily, I get to! :) He came home at 41 weeks on oxygen (for 4 months) but has had only 2 very mild colds in all his time home. He hasn't been on any meds since he was 4 weeks corrected. He's healthy, happy, and a great eater, too. Outcomes can be helped tremendously with the right kind of care, both in the NICU and afterwards. A baby's brain can rewire with therapy. Our speech therapist told us that a lot of the material they use for Early Intervention comes from the UK; she said your country is the leading edge of this kind of intervention, for which I am very grateful.


If you go to the National Institute of Health website, there is a calculator that can show you the odds for survival and disability for babies born at 22 to 25 weeks in the U.S. The data is based on a scientific study of outcomes at some of the better hospitals in the U.S. between 1998 and 2003. Even way back then, by plugging in some numbers, you can see that the chances of a 23-weeker making it was much better than the numbers cited in the film for how it is now in the UK. They included babies who died in the delivery room in that study. That is evident because they include outcomes for all babies vs. just those who were mechanically ventilated. Andrew's chance back then for survival without disability was 8 percent. But pretend he was a girl instead on the calculator and the chances for survival and survival without disability nearly double. Today, this calculator is outdated in some of our better hospitals, but it nonetheless shows you how far we've come in the last 10 years. Not all hospitals in this country will resuscitate a 23-weeker, mind you, but more are heading that way and beyond.


I am a member of an online preemie forum called Inspire, with members from around the world. We have had several regular posters from the UK. One mother's tragic tale centered on her son Oscar, born at 25 weeks. At birth they gave him very dismal odds of survival, which most of us on the board couldn't understand, because over here that is an age at which most babies can make it. In the end, he passed away. I think there is something to believing in the babies. If a hospital doesn't believe they can save a baby of a given age, then the outcome probably won't be very good. Andrew's doctors believed in him. His attending at Children's was the Chief of Neonatology there. He told me the day we took him home that he had been one of his sickest patients; he showed us one of his early X-rays and his most recent so we could see how much his lungs had improved. And he looked me in the eye and said he could go to any college in the country someday. I admit I was a bit skeptical at the time, for what I know of his heredity as well as the extreme prematurity (as one bio parent has an IQ more than one standard deviation below the mean). But my baby is testing above the mean now cognitively, and if he is at this young age, he likely will be on down the line too. Learning disabilities can creep up during the school years, no doubt, but he already has shown us he's a fast learner with a good memory, so we are hopeful things will work out just fine.


Nurture, whether in the hospital or at home, can make a world of difference. Andrew may have a disability, but he is clearly not disabled. Yet on most outcome surveys he'd be marked in the moderate disability column. A life not worth saving, full of suffering, it could be inferred from the film? Hardly. And, of course, even those with more severe disabilities can lead productive lives. Look at Helen Keller, who moved the world even though she had no sight or hearing. On our preemie board, some of the worst outcomes I've seen are for babies that were born at 26 weeks or higher, yet those children are and were (in the cases of those who didn't make it) the light of their parents' lives. So where do you draw the line, when you can have healthy 23-weekers and disabled 35-weekers? It's tough. I believe if the same debate started over here, it would center on 22-weekers, because their chances of survival are much less than 23-weekers, probably about the same as your 23-week UK stats that were given in the documentary. I understand that given such statistics, some might question whether it's worth trying to save babies so young. I just wonder why there is such disparity between our two countries' stats. And it isn't just the U.S....Australia, too, has good survival and outcome rates for 23-weekers, and I believe some other countries in Europe do as well. I think there's still room for improvement in all the countries mentioned. Maybe they can learn from one another, just as the U.S. has learned from the UK in the area of Early Intervention, which, like hospitals, can shape the future for these very early babies tremendously. Andrew's future is still undetermined, of course, but he's one baby I don't think anyone would bet against!

Karen Meuller

Link to the nih calculator for outcomes of micropreemies in the U.S.:

http://www.nichd.nih.gov/about/org/cdbpm/pp/prog_epbo/epbo_case.cfm

Charles

Dear Karen,

Thank you for your input. Adam used outdated statistics which are quite inaccurate as confirmed to me by experts in the field. The UK is not far behind the US, as Professor Marlow makes clear (he is working on the EPICURE 2 data from the UK). The effect of his program is most evident in the post by Sadie and is really most unfortunate for neonatal care in the UK, especially with the conditions of cuts to almost all services in the UK. My own experience of my son being in NICU in the UK was not like the programme and I cannot fault the people working there.

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