There’s this series of Tampa Bay Times stories by Kelley Benham French. I read them shortly after they came out in 2012. Her daughter, Juniper, was born a year before our son, Gabriel, was born. Juniper was born at 23 weeks and 6 days of gestation and then stayed at the hospital for six and a half months with a surgery for necrotizing enterocolitis and several near-death moments in the hospital.
The Tampa Bay Times series of stories gave me chest pains the first time I read them. The stories were later developed in to an hour-long documentary for Radiolab, which I must admit, I avoided as my wife told me that it included audio of the desaturation alarms in the Neonatal Intensive Care Unit which is another trigger for me that makes me feel awful. But today, I actually got around to listening to it, or to an updated version that includes a visit with Juniper at age 5, and I thought it was wonderful.
What I liked best about it was the thoroughness in which they describe the “should we treat the preemie” dilemma when a child is born in the gray area between 22 and 25 weeks of gestation. That part is somewhere around the 13-minute point in this story. Another thing I really loved about it when the parents asked for a second consult and received a visit from a neonatal nurse practitioner. The first consult came from a neonatologist, a male doctor who asked logical questions about what path to take next. That, of course, is necessary, but the nurse practitioner, a woman with more than 30 years in the NICU, was able to illustrate what she had seen among the preemies she had treated, and that kind of illustration is very necessary to a parent trying to make a decision. This moment is one of the strangest ethical/moral moments a person can be in.
I’ve been working on an article on improving this moment of decision (called antenatal counseling) for The Journal of Pediatrics. I and a doctor who collaborated with me have been through three drafts of the thing. I wish I could share the draft, but… I gotta wait.
Anyway, the Radiolab story is excellent. And, it also includes some interviews with Keith Barrington, a neonatologist whom I’ve corresponded with a couple of times. One frustrating aspect of the documentary is that includes a story of Dr. Barrington and his wife, who had a 24 week, 5 day preemie themselves, at the verge of “letting go” or switching to palliative care only, but the darned Radiolab editors neglected to mention that the Barrington preemie did actually make it.
This plug-in thing should make the story go: