As infant daughter struggled 19 Christmases ago, St. Johns County family hoped for miracle

On Christmas Day 2004, Bryan Devlin flew to icy, snowy Boston, hoping that doctors there could figure out what was killing his baby daughter Reagan. She had been born less than a month earlier in St. Augustine and just kept getting more and more sick.

Hours later, his wife Teresa and tiny Reagan followed him there, boarding a small air ambulance jet in Jacksonville. It was supposed to leave at midnight on Christmas. Bad weather on the flight path pushed that back to 3 a.m. on the 26th, but still the flight was treacherous.

Reagan rode out the storms just fine, tucked away in an incubator, but her mother — not a good flyer in the best of situations — was violently tossed and violently sick, so stricken that she too had to be hospitalized once she made it to Boston.

After tests and consultations, the Devlins got the news: Doctors had determined what was wrong with Reagan. But, at best, she had just 48 hours left to live.

It would take a miracle to save her, the Devlins were told.

The only thing that could help would be a liver transplant — with little time to spare.

That day, and the ones that followed, were a blur, a stress-filled blur in an unfamiliar city with unfamiliar, gloomy, icy weather.

And every holiday season since, Teresa Devlin can't help but recall the worry, the uncertainty, the fear and ― eventually ― the hope that filled those days.

“I always think about it," she said. "It was definitely a difficult part of our life, but it all turned out so perfect. They say 'the Christmas miracle' — I'm not saying I believe in that kind of stuff, but it turned out that way."

'She didn't have long to live'

Reagan was born Nov. 29, 2004, at Flagler Hospital, where a nurse suspected something was wrong in the way she was breathing.

She was quickly transferred to Wolfson Children's Hospital in Jacksonville, where tests showed something was terribly wrong with her liver. But a cause could not be determined, the Devlins said, even as her skin turned green, then even darker, and her condition worsened.

Then came the flight to Boston Children's Hospital where, after more testing and more specialists were brought in, the baby was diagnosed with a rare condition called neonatal hemochromatosis. It's a maternal immune reaction to the fetus that causes severe liver disease (it's since been renamed gestational alloimmune liver disease).

“Her liver was basically dead," Bryan Devlin said.

Reagan was referred to a transplant team led by surgeon Heung Bae Kim. In a recent phone interview from Boston, Kim, who is still at the hospital, recalls the moment. “She was quite sick," he said. "She was in liver failure. She didn’t have long to live.”

Waiting for a transplant

Kim said Reagan was immediately made the highest status on a transplant list. Remarkably, within 24 hours, the hospital was able to find her a liver and prepare for a transplant, which took place on Dec. 30.

Teresa Devlin sad the surgeon had told her that her child would need a miracle. Now he was able to say, "Your miracle happened."

The family never found out anything definitive about the donor, Bryan Devlin said, but they had been told the person had to have the right blood type and weigh less than 100 pounds.

Reagan was so tiny, though, that only a portion of the liver could be transplanted into her.

Read more: He wanted to donate a kidney to help Jacksonville man. Instead, it saved his own life.

Her mother remembers how Reagan had to live in an enclosed glass room after her surgery; her new liver was still too big, and doctors couldn't close her all the way. She remembers seeing lots of staples, and her daughter's incision stuffed with gauze.

It was a challenging ― but ultimately successful ― operation, Kim said. "She was quite small, about 4 weeks old. We had to use a special technique to get a liver that was small enough for her. It's not something we deal with very often, it’s rare, but she needed it because she’s so small. A very difficult operation, but she made it through, and here we are, years later: a full-grown woman. It's pretty amazing.”

Gratitude, and life plans

Reagan, who turned 19 last month, will need to live on anti-rejection medicine for the rest of her life. She has had to minimize risks to her compromised immune system: She couldn't play sports while growing up, and her parents — who are now divorced, but remain friends — kept her from water parks and springs.

"I've always had restrictions on a lot of things," she said, uncomplainingly.

She visits Boston regularly to have her health monitored., and she and her family have stayed close to Kim and the Boston Children's Hospital transplant team — many of whom are still there —who helped them through their difficult days.

After the transplant, Reagan remained hospitalized in Boston until mid-March 2005 when she was finally cleared to go home. Her mother said that while it was a relief to get home — being away for so long was really hard — she was also somewhat sad to say goodbye.

“Oh my gosh, I love Dr. Kim," she said. "We’re very close to that team. I feel very fortunate to have that team in their life, and obviously the people who donated their child’s partial liver to us — we're grateful for that, more than anything."

Reagan recalls parties in Boston with other children who had received transplants and says that every year she and Dr. Kim catch up on personal news, and she fills him in on her life plans.

Those life plans are beginning to take shape — and could involve working with transplant patients.

Reagan graduated from Bartram Trail High School and works at a Publix while taking classes at St. Johns River State College.

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She said she's thinking about specializing in child psychology. After that? Perhaps she'll become a transplant nurse or a social worker on a transplant team, inspired by those in that field whom she's come to know.

"I've told Dr. Kim that, I've told my nurse that. Just because growing up around that, it made me feel like I wanted to do this for someone else," she said.

She's gone through the transplant process already, she figures, and that could perhaps give her some insight to share with other children and families going through difficult times.

“With my experience, it’s just a comforting thing for them, a relatable thing. I can talk with them, person to person, connect them, help them out as they go through a transplant," Reagan said.

To her surgeon, that sounds like a plan.

"She told me she’s going to come work for me," Kim said. "I look forward to that."

This article originally appeared on Florida Times-Union: St. Augustine baby needed a liver transplant; Boston was only hope