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Friday, May 27, 2022

Youngest kids: setting life’s limits first

by Laura Yungari

BIRMINGHAM, Ala. ( Associated Press) — Michelle Butler was only halfway through her pregnancy when her waters broke and contractions ripped through her body. She could not escape a terrible truth: her twins were coming very soon.

Dr. Brian Sims entered the delivery room and gently explained that babies born so early would not survive. He told Butler that he could keep him at ease after he died.

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

And he did.

Until recently, trying to save babies born so early would have been in vain. Butler was in the fifth month of her pregnancy, a day before she was 21 weeks gestation. This is compared to seven weeks ago in what doctors once considered the “lower limit of viability,” the earliest an infant could possibly survive outside the womb. But over the past half century, medical science has slowly slid that limit down.

And it has made feasibility – a term many associate with the abortion debate – the key to decisions about desperately desired children at the very edge of life.

An increasing number of extremely premature babies are receiving lifesaving treatment and are surviving. A groundbreaking study this year in the Journal of the American Medical Association, which looked at nearly 11,000 such births in the Neonatal Research Network, which is part of the National Institutes of Health, found that 30% of babies born at 22 weeks, 56% born at 23 71% of those born at week 24 and at week 24 survived at least until they were healthy enough to be sent home if doctors tried to save them.

Those gains happened slowly and quietly as the concept of feasibility in the field of abortion received a lot of attention. Feasibility is mentioned 36 times in a preliminary draft of a leaked majority opinion by the US Supreme Court in the Mississippi case that Roe v. Will kill 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; According to federal statistics, more than 99% of miscarriages happen at or before 21 weeks. So although feasibility is central to abortion legislation, the essence of the argument surrounding the procedure is disagreement over whether and in what cases one should have the option of terminating the pregnancy.

Meanwhile, feasibility for caregivers of premature babies is an increasingly real concern as the science moves further down the line.

And even in this realm, it is morally loaded.

Beyond the risk of death, children with “borderline disabilities” are more susceptible to disabilities such as cerebral palsy, cognitive impairment, blindness, and severe lung problems. Often, parents and doctors are faced with a heartbreaking question that they must answer together: How do they decide what to do?

“We can do a lot of things, a lot of interventions,” said Dr. Barbara Warner, a neonatologist 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 the hand of an adult.

Their different paths show both sides of extreme prematurity.

C’Asya lived only one day. The butler keeps his ashes in a small pink and silver urn.

Curtis is the first living “microprime” in the world and is now trying solid foods and tooling around the house in his walker.

tiny fighter

Elizabeth Foglia, a neonatologist at the Children’s Hospital of Philadelphia, cannot point to a single new technology, drug or approach that has made it possible to keep more microbes alive.

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

However, complications remain common, and the care of these babies is also intensive and expensive.

Sims, who treated Butler’s twins, said it would have been “completely justified” not to try to save them. In such cases, resuscitating or continuing life-saving care is a shared decision between the parent and the medical team.

“But even when we don’t try to do anything, what a baby is trying to live up to will show you. You’ll see that the baby is trying to breathe,” Sims said.

As Curtis and Asya arrived, Sims gave both of them some oxygen. Curtis’s heart rate rose rapidly. His younger sister also did not answer. Other medical measures could not compensate for his immature lungs.

“He told me I had to call about withdrawing treatment,” Butler said. “I was actually praying quietly to myself. God came up to me and said to me, ‘If you give me C’Asia, I’ll give you Curtis.'”

After his death, Butler took care of his daughter for hours. He held her for the first time.

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

bitter progress

In the future, doctors hope that more subtle enemies like Curtis will survive.

Saving them is expected to be more accepted and common. And down the road, scientists are working on a life-saving device tailored to the tiny body and an artificial womb that they hope could someday develop into an embryo outside of a person.

Such progress will certainly deepen the ethical dilemmas.

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

Doctors hope that Curtis Means — he has his father’s last name — will continue to flourish.

At 22 months, she can be isolated from oxygen for an hour a day. He crawls, plays with his elder sister and brother and eats a large number of soft and pure foods.

One afternoon, Butler dragged Curtis into his arms at their rural Utah home. He caught her face. He kissed her hand. He 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 up, he always wants to remember C’Asia.

“I mention her name to him every day, to let him know he was a twin and ‘your twin is your angel.’ And when he’s older, I’m going to bring him a necklace where he can keep his ashes.”

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The Associated Press Department of Health and Science receives support from the Howard Hughes Medical Institute’s Department of Science Education. Associated Press is solely responsible for all content.

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