New to the Philadelphia area, Robyn and Nick weren't familiar with CHOP’s reputation as a national leader in pediatric cardiology. “We researched everything we could and discovered CHOP's Cardiac Center was one of the best in the country,” she says. “We knew we were in good hands, but it also made us a bit more nervous to know that even one of the top programs in the country had only one other case with this condition."

At CHOP, the couple had the benefit of working with a team who had diagnosed and managed the previous patient with the same condition: Jack Rychik, MD, Director of the Fetal Heart Program, and Zhiyun Tian, MD, RDCS, Chief of Fetal Cardiovascular Imaging.

Robyn and Nick met with Dr. Rychik and Elizabeth Coulter, MS, BSN, RN, Clinical Nurse Coordinator for the Fetal Heart Program. They explained the complex anatomy of the unborn baby's heart — and the very real risk their baby may not survive.

“It was alarming to hear how serious her condition was, but we wanted to continue the pregnancy. All we could do was have faith and hope the doctors' proposed treatment would work," Robyn says.

Dr. Rychik reassured the couple, saying:

Life in limbo

With the knowledge that Robyn was carrying a baby with a known birth defect, CHOP doctors referred her to Nahla Khalek, MD, an attending obstetrician who specializes in high-risk pregnancies at CHOP's Garbose Family Special Delivery Unit (SDU). The SDU is the first birth facility in a pediatric hospital for healthy mothers carrying babies with known birth defects.

Robyn and Nick immediately connected with Dr. Khalek. “We left that appointment knowing we were going to receive the best possible care. She never took her eyes off me. She was so concerned, empathetic, and obviously competent," Robyn says. "We walked out comforted that we would be in good hands no matter what.”

The clinical team's goal was to ensure Amelia wasn't born until she was at least 32 weeks' gestation. That would give the baby time to grow and her lungs time to develop.

“At the 28-week appointment, the doctor congratulated us and said 'You're going to have a baby” since we hit the minimum milestone for intervention with this condition [for survivability], recalls Robyn. “It was a relief, but we still knew we might not come home with a baby. It made it hard to prepare."

Robyn asked her family to cancel the baby shower. And while she and Nick bought baby furniture, they kept it in boxes during the pregnancy. “We knew we couldn’t bear to take it down and return things if she didn’t come home.” 

After each weekly assessment, the clinical team reassured Robyn and Nick their baby was stable, but warned she may need to be born early. As Robyn approached her 37th week of pregnancy, the team prepared for a C-section delivery on Oct. 31.

Special IMPACT delivery

Robyn's pregnancy lasted longer than anyone had expected given Amelia's heart condition, but when it came to the delivery and surgery afterwards, time was of the essence.

The plan was an "IMPACT" delivery — IMmediate Postpartum Access to Cardiac Therapy. This is a special type of Caesarean section, a highly coordinated delivery orchestrated to take place in the cardiac suite, with the baby taken immediately to an adjacent interventional room for urgent evaluation and treatment.

The IMPACT delivery is a strategy developed by the CHOP Fetal Heart Program, in collaboration with the Special Delivery Unit, specifically designed to manage exactly the type of condition Amelia had — one that required urgent, rapid cardiovascular care as soon as she was born. The plan was to quickly assess Amelia, identify the fistula, and plug it with a device using a catheter technique within the first few minutes of life.

Robyn recalls the birth process went surprisingly fast — including having a priest in the delivery room to perform an immediate baptism.

“Within minutes of getting me ready [in the delivery room] they pulled her out,” recalls Robyn. “The priest baptized her, my husband held her for a minute, they touched her cheek to mine for a moment, and then took her back for her procedure.”

Waiting for Amelia in the Cardiac Operative and Imaging Complex Hybrid Suite was Jonathan J. Rome, MD, an attending cardiologist and Director of the Cardiac Catheterization Laboratory. Dr. Rome performed a quick angiogram on Amelia and then, using a catheter, he inserted a special expanding metal plug to close the fistula. If all went well, Amelia's circulation would return to normal.

Less than two hours after Amelia was born and shortly after Robyn was moved back into her room, Dr. Rychik returned to Robyn's recovery room to share the good news: It worked.

Shortly after, Robyn got to hold her daughter for the first time.

In the days after her birth, Amelia needed a feeding tube because her overworked heart tired easily, but even with that slight hiccup, Amelia went home just 15 days later.

A healthy start and a promising future

Today, Amelia’s health is excellent. Now 4, Amelia is a normal kid with no expected restrictions on her physical activities. She doesn’t even have a scar to show what she’s been through. She is an avid reader, loves unicorns and princesses, painting, ballet class and soccer. Amelia is also learning Spanish, and she is picking it up quickly.

Robyn notes the biggest long-term effect of Amelia’s heart condition may be that she’s already medically disqualified from attending her parents' alma mater, the Air Force Academy.

Robyn says she feels fortunate the couple’s path brought them to Philadelphia.

“We feel very lucky that a doctor caught [the fistula],” says Robyn. “If he hadn’t, we wouldn’t have come to CHOP and Amelia likely wouldn’t be here.”

Robyn and Nick say they can't thank the team at CHOP enough for saving their daughter's life — and giving her a future filled with endless possibilities.

"I know we're among the lucky ones," Robyn says.