National ethics committee writes me back, hints changes may come

When our son was born at 22 weeks and 6 days of gestation, the doctors at first said they would not treat him because he had not reached 23 weeks yet. At first, we wondered, can they do that? The answer is, not only can they do that, such a refusal was actually in line with national standards.

My wife and I are rather opinionated that preemies born at the edge of viability ought to get a chance at life, and we have written both the ethics committee at Swedish Hospital, where he was born, and the American Academy of Pediatrics, to tell them that. Swedish wrote me back a couple of months ago, and recently the American Academy of Pediatrics wrote me a thoughtful response.

To summarize, they said that in their next set of guidelines, due to come out later this year, they are thinking about making the standards more flexible for children born in the 22nd week of gestation. In 2010, they wrote, the information available for 22-week preemies was quite rudimentary, but since then, better data has come out from Japan.

Now, a little more detail: The name of the committee is the Neonatal Resuscitation Program Steering Committee, and they put out clinical guidelines every few years. These guidelines are used to create training programs that pretty much everybody who deals with birthing babies has to take. These guidelines are not laws, though, as their letter to me indicates:

The Guidelines are just that, guidelines, and not rigid protocol or law. We anticipate and expect that practitioners may view the evidence differently and thus practice differently. We expect that as new evidence emerges between guideline revisions, practitioners will be aware of this information and may use it to change or guide their practice.

If the new guidelines say “Yes, you can resuscitate 22-weekers,” that does not mean that anyone then becomes required to do so. It still comes down to the judgment of the individual doctor, and guideline writers go out of their way to use language that is not legally binding.

The letter also talked about how they review the available scientific evidence from around the world:

The International Liaison Committee on Resuscitation (ILCOR) includes an international group of neonatologists who consider the published evidence concerning neonatal care at birth. The world’s literature is reviewed and evaluated according to the most rigorous methodology available, and agreement is reached within this group about what the science actually tells us. The conclusions are available for public review and all comments received are considered. The published evidence is robust on some questions and may be lacking entirely, incomplete, or of low scientific quality in other areas but all is evaluated. From the consensus on science, international guidelines for treatment are developed and from these, the NRP steering committee crafts recommendations for the US.

Evidence from Japan, where babies are routinely resuscitated in the 22nd week of gestation, has proved to be especially helpful. This particular paragraph is my favorite, especially the last part:

I assure you that we recognize the importance of issues that arose around the care of your son. We also recognize that resuscitation may be possible at extremely low gestational ages, as low as 22 completed weeks.  As you have noted, much of the early evidence around the care of infants born this early came from Japan, and that evidence was rudimentary in 2010. In our assessment of the evidence and the experience in the US in 2010, leading to the conclusion that, in general, resuscitation at less than 23 weeks at birth in the United States might not be medically indicated. We know that new evidence has emerged over the past 5 years and that it may support a change in the guidelines that will be completed later this year.

Yay! Maybe there will be a change in the awful guidelines that nearly did in our son.

And then they talked a little about doing more to include parents in the resuscitate vs. don’t resuscitate question:

The NRP Steering Committee has heard from parents reflecting the full spectrum of sentiments about risk acceptance, many encouraging that there should not be a single gestational-age specific cut off for when to resuscitate at full force, versus when it may be appropriate to offer comfort care only for the baby who has very low chance of intact survival. Having heard these sentiments, and recognizing that there is no set of clear, scientifically-validated indicators of outcome available at the time of such births, we are considering including a  recommendation which will intimately include the parents in the decision making process, particularly when the risk of non-survival or life-long major disability is very high. It seems as if your physicians practiced a similar policy, and that the outcome was very positive.

In our case, what particularly galled us what that we wanted our child to be resuscitated, and the doctors said no at first, but later did provide the care. The last sentence there “your physicians practiced a similar policy,” makes me grumble and say, “Well, sort of. Sitting in the delivery room for several hours thinking that the neonatologist and his team aren’t going to show up is not exactly being ‘included.'”

But yes, the outcome was very positive. Here’s a picture of our son buying yogurt at Trader Joe’s a couple of weeks ago. (The kid-sized carts are what make Trader Joe’s his favorite grocery store.)

3-year-old putting yogurt bins in to a child-sized cart at Trader Joe's.
Our former preemie picking out his favorite yogurt at Trader Joe’s a couple of weeks ago. He is 3 years old now.

The full set of guidelines come out in October, I think. I’m really looking forward to that.


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