SEATTLE – A Seattle baby was home in time for Christmas after local doctors bet on a last-chance, once-discarded treatment that uses liquid, not air, to inflate the collapsed lungs of fragile newborns.
Tatiana Saiaana, now nearly 4 months old, smiled and stared with big brown eyes at a sparkling tree in her family’s Seward Park-area home this week, safe in the lap of her mother, Elise Pele, 28.
“She’s doing great,” Pele said, cuddling the sturdy girl in a leopard-print sleeper.
Just weeks ago, Tatiana was one of the most critically ill babies doctors at Seattle Children’s hospital had ever seen. Before her birth via emergency cesarean section on Aug. 29, Tatiana had inhaled meconium, a mixture of fetal stool and amniotic fluid, causing severe respiratory distress.
It’s a condition that affects about 15 percent of babies, typically near the end of pregnancy when issues with the placenta can cause stress. Only about 2 percent of infants develop serious problems like Tatiana’s, experts say.
Nearly all of the tiny air sacs in her lungs had collapsed, making it impossible for the baby to breathe. She was rushed from Swedish Medical Center, where she was born, to the Seattle Children’s neonatal intensive-care unit.
“We only see the worst of the worst,” said Dr. Craig Jackson, director of the NICU. “It’s something we see maybe a dozen times a year at Children’s.”
First-line treatments had failed. Tatiana had been placed on ECMO, or extracorporeal membrane oxygenation, a treatment that uses a pump to circulate blood through an artificial lung and back into the bloodstream of a sick baby. But instead of the typical few days, Tatiana had been on ECMO for weeks, with little sign of improvement.
“We thought we were near the end,” Jackson said.
That’s when Dr. Kendra Smith, a neonatologist and part of the NICU team, suggested that she and Jackson try perflubron, a drug the two had both studied extensively more than 15 years ago.
It’s a clear, oxygen-rich liquid twice as heavy as water that can seep into the smallest air sacs in the lungs, inflating the tiny balloons and restoring breathing. Perflubron is the underwater breathing drug famously featured in the 1989 movie “The Abyss” – although the use of it lost some luster in recent years.
Although perflubron had shown success in treating fragile premature babies in the mid-1990s, use of the liquid stalled after clinical trials showed no clear benefit in adults with acute lung injury and respiratory distress. Without a large and lucrative potential market, the drug’s maker, then Alliance Pharmaceuticals, abandoned the effort.
“It was something that I’d kind of given up on,” said Jackson. “It did not occur to me to use it in Tatiana.”
But it did occur to Smith, who reached out to the federal Food and Drug Administration and the drug’s new distributor, OriGen, for enough perflubron to treat Tatiana. Because the drug is approved in Canada and Europe, but not the U.S., the FDA granted an emergency exception for one-time use.
Within a day, Shanna Seigel, a technical-support representative for OriGen, had rushed $5,000 worth of the drug to Seattle.
Once it arrived, Smith and Jackson worked to drip small amounts of perflubron into Tatiana’s lungs, no more than a spoonful or two. The heavy liquid settled to the bottom of the tiny air sacs, inflating them and allowing the renewed exchange of oxygen and carbon dioxide.
Artificial ventilation can be traumatic to lung tissue, shearing the delicate cell linings. The liquid protects the fragile structures and has anti-inflammatory properties that allow them to heal.
“It’s a different way to ventilate the lungs,” Smith said. “You can fill the lung with fluid and superimpose gentle breaths that get the oxygen liquid into the body and release CO2.”
Tatiana didn’t respond immediately to the perflubron, which worried the crew caring for her.
“People were really ready to let her go,” Smith said. “They were making a memory box for her. All the nurses thought she would go.”
But Smith said she saw something vital in the tiny girl surrounded by tubes and wires.
“She would open her eyes and she would look at you and you could tell neurologically that she was intact. She was there,” Smith recalled. “It was like she was searching you and asking you to do something.”
Tatiana’s parents, Pele and Bruce Saiaana, both 28, were not familiar with the advanced medical techniques used to save their daughter. Pele works as a front-desk supervisor at a local hotel, and Saiaana installs hot tubs. Insurance through Pele’s job covered most of the costs of the treatment, but for the most part, she said, they simply trusted the doctors to help their firstborn baby survive.
“It’s pretty awesome; you see stuff in the movies and you don’t think it happens, but it happens,” said Pele.
After three or four days of perflubron treatment, Tatiana began to improve. Against the odds, she recovered. When she went home last week, she needed no oxygen, just a feeding tube until she learns to swallow efficiently.
News of Tatiana’s success spread fast. Smith went to a conference in Washington, D.C., this month, where former colleagues who’ve studied and used perflubron wanted every detail.
“I was just thrilled,” said Dr. Jay Greenspan, chair of the pediatric department at Thomas Jefferson University Hospital and the Nemours Children’s Health System. “We think there are a lot of babies who could do either a little better or significantly better with this.”
Greenspan, who conducted pivotal research into perflubron in the mid-1990s, said he’s still in touch with patients like Adrianna Mancini, now 20. She was born at 24 weeks’ gestation, weighing 1.5 pounds, and survived only because perflubron helped heal her immature lungs.
“I’ve known about it as long as I can remember,” said Mancini, now a college student in New Jersey. “I know I wouldn’t have been able to survive without it.”
Two decades later, there’s renewed enthusiasm for the liquid ventilation, said Dr. William Fox, a neonatologist at the Children’s Hospital of Philadelphia and an early researcher of perflubron. He said he’d like to see it become an approved treatment for babies with life-threatening respiratory conditions.
“Currently, the course of treatment for these babies is extremely complex, and many have a very low quality of life,” he said. “This treatment has the potential to impact the lives of thousands of babies who might otherwise die or suffer the long-term effects of chronic lung disease.”
Resurrecting a discarded drug to save a baby’s life was “humbling,” Smith said.
“It was a good lesson for all of us as physicians and respiratory therapists at her bedside,” she said. “It emphasizes the need to go the extra mile, to not let the challenge that it might take to get there impede you from getting there.”
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