Science that saves extreme preemies forces doctors, parents to weigh disabilities children will face

BIRMINGHAM, Ala. (AP) — Michelle Butler was just over halfway through her pregnancy when her water broke and contractions wracked her body. She couldn’t escape a terrifying truth: Her twins were coming much too soon.

Dr. Brian Sims entered the delivery room and gently explained that babies born so early likely won’t live. He told Butler he could keep them comfortable as they died.

But she pleaded through tears: “Give my twins a chance to survive.”

And he did.

Until recently, trying to save babies born this early would have been futile. Butler was in the fifth month of her pregnancy, one day past 21 weeks gestation. That’s seven weeks earlier than what doctors once considered “the lower limit of viability,” the earliest an infant could possibly survive outside the womb. But over the last half century, medical science has slowly shifted that boundary downward.

And that’s made viability — a word many associate with the abortion debate — key to decisions about desperately wanted babies at the very edge of life.

Growing numbers of extremely premature infants are getting lifesaving treatment and surviving. A pivotal study in the Journal of the American Medical Association this year, which looked at nearly 11,000 such births in a neonatal research network that is part of the National Institutes of Health, found that 30% of babies born at 22 weeks, 56% born at 23 weeks and 71% born at 24 weeks lived at least until they were healthy enough to be sent home home if doctors tried to save them.

Those gains happened gradually and quietly as the notion of viability got a lot more attention in the abortion arena. Viability is mentioned 36 times in the initial draft of the leaked majority opinion by the U.S. Supreme Court in a Mississippi case that would strike down Roe v. Wade. The decades-old abortion ruling says the Constitution protects a woman’s right to an abortion before viability, a standard Mississippi argues is arbitrary.

But viability has nothing to do with the vast majority of abortions; more than 99% of abortions occur at or before 21 weeks, according to federal statistics. So although viability is central to abortion law, the crux of the argument around the procedure comes down to disagreement about whether and in which cases someone should have the choice to terminate a pregnancy.

Meanwhile, viability is a growing real concern for those who care for premature babies as science keeps moving the line lower and lower.

And in this realm, too, it’s ethically fraught.

Beyond the risk of death, babies at “borderline viability” are highly susceptible to disabilities such as cerebral palsy, cognitive impairments, blindness and severe lung problems. Often, parents and doctors face a heartbreaking question they must answer together: How do they decide what to do?

“There’s a lot of things we can do, a lot of interventions,” said Dr. Barbara Warner, a newborn medicine expert at Washington University medical school in St. Louis. “Should we do them?”

In the case of Butler’s twins, the answer was yes. Curtis and C’Asya Means came into the world on July 5, 2020, at the University of Alabama hospital in Birmingham, each weighing less than a pound and small enough to fit in an adult’s hand.

Their divergent paths reflected both sides of extreme prematurity.

C’Asya lived just one day. Butler keeps her ashes in a tiny pink-and-silver urn.

Curtis is the earliest surviving “micropreemie” in the world and is now teething, trying solid foods and tooling around the house in his walker.

TINY FIGHTER

Dr. Elizabeth Foglia, a neonatologist at Children’s Hospital of Philadelphia, can’t point to a single new technology, medication or approach that has made it possible to keep more micropreemies alive.

“It’s just a slow evolution,” she said.

Complications remain common, though, and care for these babies also remains intense and costly.

Sims, who treated Butler’s twins, said it would have been “perfectly reasonable” not to try to save them. In such cases, whether to resuscitate or continue lifesaving care is a shared decision between parents and the medical team.

“But even when we don’t try anything, a baby that’s trying to live will show you that. You’ll see that the baby’s trying to take a breath,” Sims said.

As soon as Curtis and C’Asya arrived, Sims gave each a little bit of oxygen. Curtis’ heart rate quickly rose. His smaller sister didn’t respond as well. Other medical measures couldn’t compensate for her immature lungs.

“They told me it was up to me to make the call” about withdrawing treatment, Butler said. “I actually was praying silently to myself. God came to me and told me, ‘If you give me C’Asya, I’ll give you Curtis.’”

Butler cradled her daughter for hours after she died. It was the first time she held her.

Curtis stayed in the NICU for nine more months, then went home tethered to oxygen and relying on a feeding pump.

BITTERSWEET PROGRESS

In the future, doctors expect more micropreemies like Curtis to survive.

Saving them is expected to become more accepted and common. And down the road, scientists are working on lifesaving equipment tailored to smaller bodies and an artificial womb they hope could someday grow a fetus outside of a person.

Such advances are sure to deepen ethical dilemmas.

“There always will be a limit of viability,” Foglia said. And wherever that limit is, “survival may be possible but not guaranteed. And survival without disability is certainly not guaranteed.”

Doctors are hopeful that Curtis Means – he has his father’s last name – will continue to thrive.

At 22 months, he can be unhooked from oxygen for an hour a day. He crawls, plays with his older sister and brother and eats a growing number of soft and pureed foods.

One afternoon, Butler pulled Curtis into her arms at her rural Eutaw home. He grabbed at her face. She kissed his hand. She pulled down his Winnie-the-Pooh shirt, and they touched palms in a high five.

The 35-year-old single mother envisions Curtis going to school in a few years and becoming a doctor someday.

But as he grows, she always wants him to remember C’Asya.

“I mention her name every day for him, to let him know he was a twin and ‘your twin is your angel.’ And when he gets bigger, I’m going to get him a necklace where he can keep her ashes with him.”

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