Parents of extremely premature babies face an impossible choice

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 labour 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.

What to read in this article:

• Survival rate of extremely premature babies
• A story of parents of their extremely premature baby

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.

The rate of survival of extremely premature babies

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 extremely premature babies has undergone a slow revolution within the past 60 years, successfully treating ever-younger babies.

NICU treatments

This progress is not the result of any single new technology, but the slow improvement of NICU treatments around vital functions like breathing, digestion, and brain protection. For instance, newer ventilators improve respiratory support in extremely premature babies by delivering tiny puffs of air at fast rates. Buoyed by successes, some hospitals are honing their techniques and trying treatments on younger babies than ever before. If they had success with 24-week babies, the thinking goes, shouldn’t they offer treatment to 23-week babies? And after the CDC reported that 47 percent of 23-week babies survive, what about 22-week babies?

But at the leading edge of that change, experts disagree about exactly how young is too young. It comes down to physician opinion and hospital policy. Some offer NICU treatment starting at the beginning of 22 weeks, while others wait until the 23rd or (rarely) the 24th week. And while physicians know about this disagreement, most parents don’t know that it could mean the difference between life or death for babies born in the 22nd or 23rd week. Comfort care versus NICU care is the choice between a peaceful but certain death, and a small, but real, chance at survival with months in intensive care.

Kil’s looking for any scrap of hope

For their part, the Kils were looking for any scrap of hope. Once they arrived at the hospital, they said a nurse practitioner told them the hospital would not consider administering life-saving treatment for the baby until Kil reached the first day of 23 weeks’ gestation. Making it that far would be unlikely. In fact, the most crucial treatment — a steroid shot — could have been given to Kil as soon as she arrived. Two steroid shots, at least 24 hours apart, can double a child’s chance of survival at 22 weeks.

Because this medical center’s policy was not to treat babies at 22 weeks, according to Kil, they did not give her the steroid shot. Kil remembered the nurse practitioner said, “if they did try to save him, he wouldn’t have any quality of life.” As many as three-quarters of babies who survive birth at 22 weeks go on to have a serious disability, including blindness, cerebral palsy, severe intellectual disability or deafness.

Kil was devastated by the news that her baby would have no chance of survival. But she also wondered if it was true; she knew that her fetus was estimated to be big and that birth weight matters in a premature baby’s chances of survival.

“They would not listen to me–the nurse said, basically, they’d put him on my chest and then he’d breathe and pass.”

Kil was correct that her fetus’ estimated weight mattered. Birth weight, sex and the reason for the premature delivery can influence a preemie’s prognosis. Not only that, many bioethicists question whether gestational age alone is a good yardstick by which to make the decision of whether to offer NICU treatment, since there are so many factors at play and because the calculation of gestational age can be off by at least one week.

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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.

Hospitals that don’t offer parents the choice of NICU care at 22 weeks are not unethical. They are making a judgment call about what is best for the baby based on what they see as a low chance of survival balanced against the potential pain of intensive care.

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. 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.

Policies around potentially life-saving care for babies born at 22 or 23 weeks can vary from hospital to hospital for several reasons. Small hospitals are less likely to have NICUs that are able to care for fragile babies. Baylor Scott & White, which treated the Kils, would not comment about a specific case but said in a statement that their policy is to first stabilize the patient (either the baby or mother) and then evaluate appropriate steps, including transfer to another facility.

However, even top academic institutions disagree about the right approach to treating 22- and 23-week babies.

One of the problems in healthcare

The University of California, San Francisco, has a top-tier, high-resource hospital that is transparent about its policy of offering only comfort care for babies who are born up to the first day of the 23rd week, down to the hour. And to qualify for resuscitation before 24 weeks, the baby’s mother must have received a steroid shot at least 24 hours before birth, though that is sometimes negotiable.

Dr. Elizabeth Rogers, M.D., an attending neonatologist at U.C.S.F., said she and her colleagues are evaluating the research on outcomes at 22 and 23 weeks and will change their policies when the evidence in the literature suggests they should.

One concern for her is consistency of options offered within her hospital. She said that racism and other bias are problems in healthcare, and a nonnegotiable gestational age policy ensures that everyone is treated the same way rather than leaving it up to individual providers on a case-by-case basis. Dr. Rogers said,

“It is unacceptable to me that if a woman arrives on a Thursday, she gets different treatment than if she arrived the next day with a different provider on call. There are places where that is true.”

Anyone who has spent time in a NICU knows that it is not easy: Intensive care can be painful. For the smallest babies it must last for months and can leave them with complex medical needs. Sometimes premature babies die no matter what care is offered to them. But parents like Kil want families to know that they can ask questions and push back.

Dr. Christy Cummings, M.D., a neonatologist at Boston Children’s Hospital, agreed. She pointed out that many premature births are unanticipated, but some women do know they are high risk. If that’s the case, she recommended that high-risk women ask their provider early in the pregnancy. And how these extremely early births are handled at their hospital. Since it is not always safe or feasible to transfer during labor.

A day the Kil’s won’t forget

As for Kil, a day into her hospital stay, her water still had not broken, so she was still pregnant. At the urging of a Facebook group of NICU parents, she started calling around to see if other hospitals would offer care to give her baby a chance at survival. Texas Health Presbyterian in Plano, 15 minutes down the road, responded that they would try. The day she reached 22 weeks, she transferred and received a steroid shot immediately. Two days later, at 22 weeks and three days, Kil gave birth to Tommy, who weighed 1 pound, 5 ounces.

“I took it one day at a time,” said Kil of her son’s 140-day NICU stay. Tommy survived. For his first few months at home he was on oxygen, but today he is a healthy 2-year-old who just started nursery school. So far, it seems the only lasting effects of his prematurity were his need for eye surgery and glasses. In photos on Instagram, he grins in the bath, dresses up as a bat for Halloween and sits on Santa’s lap with his sister.

“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.”

“Parents of Extremely Premature Babies Face an Impossible Choice” by Sarah DiGregorio © 2020 The New York Times Company

Sarah DiGregorio is the author of “EARLY: An Intimate History of Premature Birth and What It Teaches Us About Being Human.”

This story was originally published on 16 April 2020 in NYT Parenting.

Republished with permission from theAsianparent Singapore