Evidence complicates decisions on when to save preemies

When Gabriel Ruthford was born at Seattle’s Swedish Medical Center in 2012, he was so premature that doctors seriously doubted they could save him — and almost didn’t try.

The Maple Valley boy arrived at 22 weeks, six days — one day shy of 23 weeks, then regarded as the lowest threshold at which medical crews should attempt resuscitation. He was so early that in some states, he legally could have been aborted.

Gabriel’s parents, Eric and Miri Ruthford, wanted intensive interventions to save their baby — including help breathing and keeping his heart beating — but say they encountered a medical system that actively discouraged such care.

“The doctor said that he advised against resuscitation because the results were just so poor at that stage,” recalled Eric Ruthford, 36. “He said, ‘If you give birth after midnight, I’ll be the one who comes and does the resuscitation, but my heart won’t be fully in it.”

Ultimately, the parents prevailed and the 1-pound, 6½-ounce baby survived, trumping the medical odds. To be sure, he wasn’t out of the woods and endured weeks on a ventilator and other breathing devices, plus five months in neonatal intensive-care and special-care units — all at a cost of more than $1 million.

Three years later, Gabriel Ruthford is an active preschooler who loves peas and train videos and shows few signs of his early birth. But he’s also the embodiment of an ongoing debate about when to aggressively treat such premature babies and how best to counsel their parents to make the agonizing decisions they face.

Two weeks ago, two groups of national and international experts lowered the bar for neonatal resuscitation to 22 weeks, down from 23 weeks, based in part on new evidence that shows a tiny number of such babies can survive without serious problems, with medical treatment.

The move offers new hope to parents such as the Ruthfords, but it also raises questions in a country where abortion laws hinge on the definition of viability and complicated ethics surround medical care at the margins of life.

“The thing that people question is, is there a hard stop?” said Dr. Andy Beckstrom, a neonatologist at Swedish, one of three regional hospitals — along with the University of Washington Medical Center and Tacoma General Hospital — where extremely premature infants are delivered.

Medical consensus has generally regarded 24 to 28 weeks as the age of viability. The U.S. Supreme Court has said that states must allow abortion if a fetus is not viable outside the womb, so lowering the threshold may spark new debate about when abortion is legal.

But for parents facing premature delivery, the question is this: Can my baby be saved?

“We try not to be locked into policies, but to approach these cases when they individually occur,” Beckstrom said. “Every child is going to be unique.”

Hard conversations

The new guidelines urge doctors to focus more on parental preferences and values when they have the hard conversations that can occur weeks — or even minutes — before a premature birth.

“We tried to emphasize that factors other than gestational age contribute to survival and neurodevelopmental outcomes,” said Dr. Kristi Watterberg, a professor of pediatrics at the University of New Mexico and chair of the American Academy of Pediatrics committee that issued the new rules.

That’s a relief to the Ruthfords, who say doctors need to do more to ensure that families facing such circumstances understand every option, from active medical intervention aimed at preserving life to comfort care to ease death.

“I think everyone should be given the choice and not pushed one way or the other,” said Miri Ruthford, 35, a veterinary technician.

In the 1970s and early 1980s, a baby like Gabriel wouldn’t have had a chance. Infants born between 20 and 25 weeks were considered nonviable, according to a 2014 workshop on early births convened by groups including the American Academy of Pediatrics and the Society for Maternal-Fetal Medicine. When such babies were born, they were allowed to die, without attempts at lifesaving interventions.

But as technology has improved, so have efforts to revive such tiny preemies. Doctors now routinely rely on ventilation, intubation and other measures to boost preemies’ lung and brain function, including corticosteroids given to mothers before or during labor and use of artificial surfactant, a liquid that coats the inside of babies’ lungs and keeps them open so they can breathe.

Such efforts have boosted survival rates dramatically. About 72 percent of babies born at 25 weeks survive, and about 55 percent of those born at 24 weeks will live, data show. That drops to about 26 percent of babies born at 23 weeks — and just 6 percent born at 22 weeks.

For those babies and their families, that creates a “gray zone” where the choices are far from obvious, local neonatologists said. Dr. Sandra Juul, division chief of neonatology at UW Medicine and Seattle Children’s, said babies at UWMC are routinely resuscitated at 25 weeks, and likely resuscitated at 24 weeks, unless their families object. At 23 weeks, families are advised to make their own decisions, she said.

At MultiCare Tacoma General Hospital, 23 weeks has been the earliest point at which babies have been resuscitated, said Dr. Serena Scott, medical director of the neonatal intensive-care unit (NICU).

Now, that conversation is changing, in the Seattle area and across the nation.

Families expect babies to survive now at 25 weeks.” - Dr. Andy Beckstrom, neonatologist

“Families expect babies to survive now at 25 weeks,”  said Beckstrom, the Swedish Medical Center neonatologist. “The discussion of 22 weeks is a relatively new thing in our world.”

That discussion grew sharper last spring, with the publication of a study of nearly 5,000 babies born between 22 weeks and 27 weeks at two dozen centers across the U.S. Posted in The New England Journal of Medicine, it found that a small number of babies born at 22 weeks who received medical treatment survived, even though most died or suffered debilitating health problems.

Of the 357 babies born at 22 weeks, active treatment was given to 79 infants, and 18 survived, the study found. Of those, seven did not have moderate or severe impairment by the time they were toddlers.

The study did not focus on the costs of such intervention, which can mount quickly. A day’s care in the NICU can top $3,500 and it’s not unusual at all to exceed more than $1 million for a prolonged stay, according to the American Medical Association.

The Ruthfords had privately purchased health insurance to cover the costs, plus help from family and friends. They moved into Eric Ruthford’s parents’ Maple Valley home to cut expenses.

About 13,000 extremely premature babies are born between 22 weeks and 25 weeks in the U.S. each year, with about 5,000 born between 22 weeks and 23 weeks, according to figures from the Centers for Disease Control and Prevention. In 2012, the year Gabriel Ruthford became the most immature infant ever born at Swedish, there were 46 babies in Washington state born at 22 weeks, though the data don’t indicate how many survived.

The difference between fetal development at 22 weeks and 23 weeks can be significant, said Beckstrom.

“The challenge with data is that 22 and 0 days is a much more immature baby than the one born at 22 and 7,” Beckstrom said. “We have a mantra that says every day counts at that gestation.”

Deciding not to give up

When Miri Ruthford went into labor not quite 22 weeks into her first pregnancy, doctors said she’d have to reach at least 24 weeks for the baby to a chance.

“They kept saying it was too early, too early, too early,” she recalled.

Doctors emphasized that Gabriel likely wouldn’t survive, and if he did, he could have serious problems such as blindness, deafness or severe cerebral palsy. They warned the burden of caring for such a child could be too much for the family to bear.

The Ruthfords said that didn’t sway them. “We’ve always been of the belief that as soon as a child is conceived it’s a child,” Miri Ruthford said. “I’m not going to give up on my child just because it’s hard.”

When her water broke and it became clear the baby would arrive on April 25, 2012, at 22 weeks, six days, the Ruthfords say, they still didn’t feel supported in their decision to seek active intervention.

“It felt like we were bucking the will of the doctors,” Eric Ruthford said.

Today, they’re glad they did. Gabriel is a typical 3-year-old boy, his mother said, one who likes emergency vehicles, airplanes and singing “The Wheels on the Bus” way too much.

He’s still smaller than other children his age and has problems with eating, likely related to so much time using feeding tubes as an infant. To ensure that he gets the nutrition he needs, Gabriel’s parents feed him some meals through a tube in his stomach.

Those amount to minor problems, said Eric Ruthford, a former journalist and manager of a nonprofit homeless shelter who’s writing a book about neonatal resuscitation and has become an advocate for expanded parental choice.

A week ago, after extended correspondence, the Ruthfords met with the Swedish ethics committee, where members apologized for the family’s experience during Gabriel’s birth.

“They told us they really wanted to make sure that when a family makes a decision on care at the edge of life, that decision is fully supported, and in our case, it was not,” Eric Ruthford said.

Swedish officials did not dispute the Ruthfords’ account of their son’s birth but said they couldn’t discuss details of patient care, citing federal privacy rules. Melissa Cate, who oversees operations and strategic planning for women’s, infants and children’s services, said hospital officials apologized because they took the family’s complaints “very seriously.”

“We want to learn from people’s experience,” she said.

Other local parents who’ve delivered very premature babies more recently said they were pleased with how their doctors handled the difficult discussion.

When Sarly Dickinson’s water broke in June, 23 weeks into her second pregnancy, doctors at UW Medical Center put the 33-year-old Kenmore mother on bed rest and counseled her and her husband about what to expect.

“At 23 weeks, we had to definitely process that we may have to love him and let him go. That was definitely heart-wrenching and heartbreaking,” she said. “They are as sensitive as they can be in that situation, but they also have to make how clear it is that it could be a tragedy, and what his life will be like if he lived.”

David was born July 1 at 25 weeks. He had hydrocephalus, a buildup of fluids in cavities deep in the brain, and needed surgery at Seattle Children’s to implant a permanent shunt in his brain. He went home for the first time last week.

In the face of such varied outcomes, the new guidelines are a welcome acknowledgment that there is no single answer about what’s best for the tiniest babies, Ruthford said. Parents should be fully informed about the odds and the options, but then allowed to decide, without pressure.

“We want to tell doctors, don’t be so negative about a child’s chances,” he said. “Statistics are for groups, but our one child might live. Each kid is an independent event.”