Yesterday, I met with a neonatologist who thinks a great deal about policies on resuscitation and about how to make sure families are both informed and supported in their decisions. He said that the medical community goes through periods where a new treatment is available and they’re very fervent that it’s the right thing to do, and then the results make it clear that many patients suffer greatly from the treatment.
One example he gave was hypoplastic left heart syndrome, a congenital heart defect that used to be almost always fatal. I am acquainted with two people who have had this — one is a girl in my church who got three heart operations back in the late 1990s and is active now but impaired. The other is my son’s second cousin, who died at four months of age two years ago.
From what little I know of the condition, a series of three open-heart surgeries can be done to re-route the heart and make it so long-term survival is possible. Back when these three procedures were developed, my friend the neonatologist said, physicians were very enthusiastic about them and thought that it was unethical not to do them. Now, they are re-thinking that as it’s become evident that many patients do not have a good quality of life, and more parents are saying they would rather take their child home and simply have a quality year together.
Same thing occurs with extremely premature babies — once surfactant became available, some physicians wanted to try to save all preemies at 23-24 weeks. Then, low survival rates made them re-think that, and some doctors, including the one who treated Gabriel when he was born, were of the opinion it was better to allow them to die peacefully in the delivery room. But just a few months ago, the American Academy of Pediatrics lowered the generally accepted limit from 23 weeks down to 22 weeks.
So, what’s the right answer? And the frustrating thing here is that there isn’t one. I’m so glad we did what was necessary to keep Gabriel, but I can’t accuse families who decide to forgo aggressive treatment of doing something wrong.