The New York Times: Parents of Extremely Premature Babies Face an Impossible Choice
By Sarah DiGregorio
In late October of 2017, in the middle of her 21st week and just over halfway through her pregnancy, Sarah Kil started bleeding. She recognized the symptoms of preterm labor because, just a few years earlier, she had given birth to a son at 24 weeks. He died of an infection 10 days later. Kil, 34, of McKinney, Texas, knew that one preterm birth meant she was at increased risk for another. And sure enough, this pregnancy seemed to be ending even earlier than the previous one.
Kil and her husband Hyung drove straight to Baylor Scott and White Medical Center in nearby Frisco. There, doctors confirmed that Kil’s cervix was dilating—opening too soon—and delaying birth for a few days or a week was all they could hope for. They didn’t know then that the hospital they chose could actually determine the fate of their unborn baby.
Of the 3.8 million babies born in the U.S. each year, just over 10 percent are born prematurely, defined as coming earlier than 37 weeks’ gestation. The chance of a baby surviving birth at 24 weeks or later is usually high enough that doctors will attempt life-saving treatment, which involves resuscitation in the delivery room followed by care in a neonatal intensive care unit (NICU).
Babies born earlier than the first day of the 22nd week are generally too immature to be successfully treated with intensive care and have almost no chance of survival. In such cases, clinicians will simply let the parents hold the baby immediately after birth until he or she dies, which often happens within minutes. This is called comfort or palliative care, akin to a very short hospice.
But each year in the U.S. about 5,000 babies are born in the uncertain window between 22 and 23 weeks, in which their chances of survival are generally low but not zero. This is because the treatment of premature babies has undergone a slow revolution within the past 60 years, successfully treating ever younger babies.
The outlook for babies born at 22 and 23 weeks is not sunny, but it is improving. In two multicenter studies published in 2015 and 2018, 23 and 38 percent of babies born at 22 weeks and given intensive care survived to hospital discharge. For 23-week babies, the survival rate was as high as 55 percent. Last year, the University of Iowa reported that, among 20 babies who were born at their children’s hospital at 22 weeks between 2006 and 2015, 70 percent survived, which is the highest survival rate at that gestation ever reported in the United States.
Some of that change in survival has to do with improvements in the intensive care. But some of it has to do with giving them intensive care at all: Ten years ago, it was rare for a 22-week baby to get NICU care, which led to survival rates close to zero. As more babies are actively treated, more survive.
Dr. John Lantos, M.D., a pediatric bioethicist at Children’s Mercy Hospital in Kansas City, Mo., said we are in a complex moment of transition. “Ten years ago, people would have said it’s unethical to even try to treat a 22-week baby,” he said. “They would have said it’s subjecting the baby to a painful prolongation of the dying process with no hope of a good outcome.” Today, some centers have changed their view and others have not.
“Parents don’t know their options,” Kil said. “If my child has problems, then that should be up to me to decide if I can live with that. I’m the parent. But just to let my child pass without even giving him a chance, I feel like that’s not fair.”
Read the full story via The New York Times
Learn more about Bioethics at Children's Mercy