Not anymore. Today, a former micro preemie, her family and her doctor share a powerful story of determination.
Amelia Regenor was once so astonishingly small, just 1.1 pounds, that her father’s wedding ring could encircle her leg. “She was the size of a beanie baby,” Jim Regenor says.
Amelia’s odds were tiny, too, says MUSC Children’s Health neonatologist Carol Wagner. “I think her chance of surviving at that time was less than 1 percent.”
Amelia beat those odds thanks to Wagner’s willingness to think outside the box. Today, she’s a happy, healthy, eighth grader, and she and her parents stay in touch with the doctor they credit with saving her life. Amelia’s father calls what Wagner did for Amelia “transformative” and wants other families to hear their story. “Dr. Wagner was very forward thinking,” he says.
Amelia came into the world in May of 2003 at just 24 weeks of gestation, which Wagner says was right at the edge of viability for that time. Amelia’s mother, Sherece Regenor, had no choice. The pregnant woman suffered from the autoimmune disorder antiphospholipid antibody syndrome, which caused preeclampsia and led to the early delivery.
Amelia would spend the next 5 months in the Neonatal Intensive Care Unit at MUSC Children’s Hospital, a state-designated regional center for critically ill newborns. Wagner remembers it well. “She was quite sick with respiratory distress syndrome and extreme prematurity.”
And that wasn’t all. “She had many other problems, including growth issues, some infections, eye problems and the need for intravenous fluids for long periods of time,” Wagner says.
Amelia was a micro preemie, a term used for babies weighing less than 1.75 pounds who are born before 26 weeks of gestation. The tiny girl, whose eyes weren’t even open yet, rested in an incubator as doctors, nurses and machines worked to keep her alive.
One of the chief concerns involved her lungs. They weren’t making enough surfactant, a slippery substance needed for the lungs to work properly. So while Amelia breathed with the help of a ventilator, Wagner and her team gave the baby artificial surfactant. Four doses over the first three days is the normal maximum dose. But Amelia’s father, who was frantically doing research on his fragile daughter’s condition and had read medical reports about surfactant, asked Wagner to go beyond that.
“I went to the hospital and said, ‘Tonight we’re going to die trying. We’re not going to try dying,’” Jim Regenor remembers.
Wagner listened. “We all worked as a team to keep her alive. It takes a village,” she says. She consulted her colleague John Baatz, a neonatal lung disease specialist, who had done research and had data suggesting that extending the surfactant use might work. Amelia got a total of 11 doses, which Wagner says helped save her life.
“It is essential to have the input of the family. They are there at her bedside many more hours than I am, day after day. When parents have read a medical journal report, I read that report and then discuss it with them. We are a team, and that includes the parents,” Wagner says.
“I think that eventually Amelia might have gotten extra doses of surfactant, but had it not been for Mr. Regenor asking me to think outside of the box — that seems to be a recurring theme in my career - I would not have explored the surfactant protein levels as quickly as I did. Working with Dr. Baatz also made this possible. We are one of very few centers in the country to have his type of expertise.”
Jim Regenor, a now-retired Air Force colonel, realizes how lucky he was to have doctors who saw him as part of their team. “I fly airplanes for a living, or at least I did,” he says. “And I told Dr. Wagner, if you walked up front one night and said ‘Hey, I read a book on landings, and I’d like to land this plane right now.’ I’d say, ‘Go sit down.’
“In our case, it was – ‘I read an article about landings, and tonight is the worst weather possible. I’d like to do the landing.’ The mere fact that she was entertaining what I had to say was refreshing and really ultimately led to a successful outcome.”
Amelia’s struggle wasn’t over yet. She dealt with fungal pneumonia and discomfort as she was weaned off pain medication. But Jim Regenor says it was worth it. “We did all this in the framework that she had a viable brain and had not had a brain bleed. Had she had a brain bleed, we’d probably have approached the treatment differently. She had the ingredients to have a very viable life that wasn’t going to be dependent on us sustaining it.”
He was right. Amelia, who has had further medical procedures over the years, is doing great with no long-term effects. She is a competitive cheerleader living in East Aurora, New York. She and her family have visited Wagner the past two years while on vacation in Charleston and toured the Neonatal Intensive Care Unit where her life began. Amelia got to see one newborn as small as she once was. “I get the hard work they did for me,” she says. “I can’t believe I was that tiny.”
This year Amelia gave Wagner a friendship bracelet that has Amelia’s birthstone, an emerald, as a charm. Wagner wears it often. “It’s a reminder of what I need to do every day,” she says.
“It is essential in this day and age of protocolized medicine that we not lose sight of the patients who do not fit the mold, who are the outliers, and who will benefit from thinking outside of the box. Amelia would not be here today without that approach or she may have been vastly different neurocognitively. We have to challenge ourselves to create new therapies that make sense based on laboratory data, and we must continue to interface basic science research with bedside findings for breakthroughs in care.”
Amelia’s parents aren’t the only ones who can attest to Wagner’s commitment to using science to inform the way she treats her young patients. Susan and Barry Honowitz’s son Casey was born with the umbilical cord wrapped around his neck six times and suffered a stroke. After he was rushed from Hilton Head to MUSC Children’s Hospital, Wagner used therapeutic hypothermia, a method that involves cooling the brain, to try to protect his brain from further damage. It worked, making medical history and leading to a series of clinical trials that confirmed that the therapy was worth using.
“I think the old adage ‘do no harm‘ is important,” Wagner says. “But we should not be complacent with the status quo. We must challenge dogma that no longer fits what we know through breakthroughs in genetics and epigenetics. We must every day come away from work feeling that we have in some small way contributed to the success of our patients—in this case, the success of very critically ill, fragile newborns.”