The birth of our son five years ago was very, very scary as he was born at 22 weeks and 6 days of gestation, and our stress was made worse by doctors saying that a child younger than 23 weeks of gestation could not be resuscitated. (They rounded up, thank God.) Since then, we have wanted to do something to help other parents who are dropped in to this bizarre situation.
We wrote an article for the Journal of Pediatrics that we hoped would influence doctors’ thinking. Here’s its abstract:
In this article, a father and mother thoughtfully reflect on their experiences surrounding the imminent birth of their son Gabriel at the edge of viability. They suggest that physicians should try to understand the values and motivations that will influence parental decisions before reviewing with them the probability of survival and the most likely range of functional outcomes. A neonatologist not clinically involved in Gabriel’s care recounts new lessons learned and previous lessons validated during this collaboration that can help neonatologists establish stronger partnerships with families. [Full text available here]
The way that this article came about was that we realized that doctors don’t actually read long medical memoirs by parents about miracles and personal growth. In order to influence the medical community, we’d have to learn to speak doctor, and write something in a publication that they actually read. So I wrote an editorial to the Journal of Pediatrics, which is published by the American Academy of Pediatrics, also the organization that created the “23 weeks” rule that in 2012 was in fact the accepted national standard. (This has since been changed to 22 weeks as the minimum.)
The editor of the Journal of Pediatrics was amazingly receptive to the idea. I thought I’d just be dismissed as a parent out of touch with the bigger picture, but the editor did want to do something with the editorial, so he paired me up with a neonatologist, Mark Hudak, chairman of neonatology at the University of Florida-Jacksonville. We talked on the phone a couple of times about our experiences and our perspectives. And he told me that in his experience, he’d had parents beg for resuscitation at 20 weeks, and ask for no resuscitation at 28 weeks, and in both cases, he had to go against the wishes of the parents. (And I’d have to agree with him even though we were almost subjected to the same kind of physician refusal — this is complicated.)
I wrote an article about our experience and our suggestions for improving the process of antenatal counseling, including that physicians should:
- Seek out the motivations of parents, not just their wishes
- Say something like “Your child is welcome in our nursery” to parents of a “gray zone” baby. Affirming, but doesn’t introduce bias.
- Talk about difference between short goodbye and long goodbye and ask parents what they think.
- Find ways of illustrating lives of impaired preemies rather than just saying something like “severe neurodevelopmental impairment.”
Dr. Hudak then wrote a commentary in which he additionally encouraged physicians to examine their own preconceptions about the edge of viability.
I was so excited when this published! Of all the things I’ve wanted to do for preemies, I think this is the most important.
I don’t know what life the article will have now that it’s been published, but so far, it’s been mentioned by the excellent Keith Barrington, a Canadian neonatologist who is also a preemie parent himself, who runs the blog “Neonatal Research.” If you heard the famous “Radiolab” story on baby Juniper in Florida, Dr. Barrington’s voice is included in it. His commentary on my article appears towards the end of his post.
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