By Stephanie Stahl


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PHILADELPHIA (CBS) – A baby with a rare heart defect is saved by Children’s Hospital of Philadelphia. Any place else and this baby probably would not have survived. Even the team at CHOP hadn’t seen anything like it in a decade.

It was scary for the parents, and challenging for the medical team.

Amelia is the baby Robyn and Nick Thome always dreamed of, but thought they’d never have.

“She’s our life. She’s the light of our life,” Robyn Thome said.

Robyn Thome had two miscarriages and when she was 20 weeks pregnant with Amelia, a deadly heart defect was discovered that affects blood flow between the heart and lungs.

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“A pulmonary arterial venous fistula,” Dr. Jack Rychik, director of fetal heart program at CHOP, said. “This is an extremely rare condition. We’ve seen only one other case in my entire 25-year career.”

To save Amelia, CHOP doctors had to operate as soon as she was delivered.

“We went into delivery knowing it was either going to be the best day of our lives or the worst day of our lives,” Nick Thome said. “That was really tough.”

Seconds after Amelia was born, Dr. Jonathan Rome used a catheter hoping to correct the defect.

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But because this was only the second case ever done, there were a lot of unknowns.

“Well, you have to use the tools you have available and make them work for whatever you encounter,” Rome said.

They used a metal plug to correctly reroute the blood flow. The moment they knew it was a success was when it all went to the lungs the way it’s supposed to.

Now four months later, Amelia is doing well.

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“She’s perfect,” Robyn Thome said. “We are so incredibly blessed that – you know, we look at her every day and think, we’re very lucky to have this miracle. We’re very grateful.”

Doctors say that the plug that saved Amelia will stay in place. She doesn’t appear to have any complications following the intervention and is now expected to grow up a healthy little girl.

Stephanie Stahl