Here’s a bit of very encouraging news on my efforts to advocate for 22-week preemies — a month ago, I wrote to the co-chair of the ethics committee at Swedish Hospital, where Gabriel was born, to give some suggestions for how better to deal with preemies born at the edge of viability, and last week, they wrote me back!
The letter I wrote was six pages long, and I won’t get in to all of that, but the suggestions I made boiled down to five points:
- Don’t be so negative about the child’s chances — we knew our child was in extreme danger, so why try to depress the parents further?
- Be more willing to treat 22 weekers. Our doctor had said he wouldn’t treat our child until he got to 23 weeks and zero days, an arbitrary line which we really did not like.
- Update your statistics, and explain what they mean. They apply to groups, not to individual children, and we later learned that survival chances were better than the statistics they were showing us. Also make it clear that it’s only been since the 1980s that these children were savable, meaning that the data sample size is pretty small.
- Explain better what “impairment” means. The statistics have “profound impairment” and “moderate to severe impairment” as possible outcomes. Moderate impairment (which our son has since scored as such a few times) is really not that bad, but when you’re in crisis before a birth, it sounds like a life-without-parole sentence. Also bring in an occupational or physical therapist to the antenatal counseling to explain how therapy works for a preemie.
- Talk less about potential disability as a reason to withhold care or to terminate a troubled pregnancy.
The letter indicated that they are re-evaluating and revising their documents on treatment of extremely premature infants, and one of the doctors, Andrew Beckstrom, is leading the effort. (Dr. Beckstrom was one of several doctors who treated Gabriel in the NICU during his long stay.) I was quite pleased with the letter, which you can read here: Swedish letter