This is great. A journalist at the Tampa Bay Times who had an infant herself at 23 weeks gestation has just written one of the best articles about SUPPORT, from the point of view of someone who has experienced NICU from the other side, someone who is very articulate and thoughtful, and she gets it just right.
The piece certainly rewards reading in its entirety. The last 2 paragraphs I reproduce below:
In the time we lived in the NICU, we learned to accept risk. Just to enter that place is to embrace terror and uncertainty. There may be risk to participating in a study, but there is also risk to not participating. I don’t believe that ethicists and doctors at two dozen institutions conspired to hurt babies. If they decide to tweak the language in their paperwork, so be it. But second-guessing and finger wagging should not hamstring further studies. At the frontier of human possibility, no form can make medicine a safe or predictable endeavor.
What protects our children most is solid research, and the wisdom drawn from babies who came before.
Kelley Bentham has written about her experiences before, I don’t think I have linked to the wonderful, moving series of articles that she wrote in her newspaper.
She doesn’t whitewash the tough parts, and her daughter very nearly died, but her story and her musings are well worth a read.