Ethical Issues in Extreme Prematurity Brought to Light by This Lovely Life

Monday, August 17, 2009 20:50

Posted in category Books, Preemies

Recently, my post about the HR 3200 healthcare reform bill sparked a little debate in the comments about neonatal resuscitation in extremely premature babies. I, like many parents of preemies, have strong opinions about how I would want my own child cared for if they were born very premature (before 25 weeks). However, aside from the fact that I think parents should have the most accurate possible information about the potential longterm complications of prematurity, I have no opinion whatsoever about what other parents should do in the face of an extremely preterm delivery.

As I said in the comments to the healthcare reform post:

I think that when the government draws a line, either forcing or refusing resuscitation, it is bad policy. We should be focusing on medical reality in the specific case, not bureaucracy.

All of this leads me to a book I read recently. This Lovely Life: A Memoir of Premature Motherhood tells the heartbreaking story of Vicki Forman and her twins, who were born and resuscitated at just 23 weeks gestation, despite her urgent pleas to let them go. Ellie and Evan were born in California, and because they were born showing signs of life, California law mandated that the hospital provide them with life sustaining treatment. Ultimately, Ellie died of complications of her extreme prematurity when she was just 4 days old. Evan, on the other hand, survived to leave the NICU blind, tube fed and struggling.

The book delves into the barriers Vicki and her husband faced negotiating the medical system, trying their best to advocate for their babies. From the moments before their birth, through Forman’s struggles to find treatments for the serious medical problems that follow Evan out of the NICU, we see how the experience transforms her and marks her and her family for life.

The ethical issues surrounding the twins first moments sucked me into This Lovely Life, but the truthful way that Forman deals with her fears and hopes throughout the book kept me turning the pages until I had read it all in one night.

The fact that California law dictated the outcome for these babies and their family really made me think long and hard about the system, what I would want for a child of my own, and what I would be willing or able to do to make sure my wishes were carried out. I think it’s an important read for doctors, law makers and parents.