Parents share child’s congenital heart disease diagnosis to encourage resilience

Eleanor’s battle with transposition of the great arteries inspires hope in parents

SAN ANTONIO – A local family is sharing the story of their child’s congenital heart disease diagnosis as a way to encourage other families to focus on resilience.

Collin and Sara Young say there was excitement with the arrival of their second child.

“We had ultrasounds pretty much every week up until she was born. And every ultrasound, she looked great, looked beautiful. So, we had no idea anything was going on,” said Sara Young.

But seconds after their child was born on July 23, there was a problem.

Baby Eleanor was purple. Doctors tried oxygen, but it didn’t help, so she was rushed to the NICU.

“She was five days old the first time we got to hold her,” Sara Young said.

Dr. Jennifer Johnson pediatric cardiologist at Pediatrix Cardiology of San Antonio and the team of experts diagnosed Eleanor with transposition of the great arteries, or TGA, a birth defect of the heart in which the two main arteries are abnormally positioned.

“Congenital heart disease is actually 1% to 2% of all pregnancies,” Johnson said.

Texas-mandated newborn screenings help diagnose these types of defects.

“Most of these kids have oxygen saturation that are, you know, on the lower end of normal,” Johnson said. “And that’s how they’re picked up because of the newborn screening that all — throughout the state of Texas, every child who’s born has to do a newborn screening prior to going home from the newborn nursery.”

They can also be detected before birth, Johnson said. But she always assures parents it’s nothing they could have prevented.

“I feel like I blacked out because you’re just scared. It was hard with Collin having to leave, and then I’m also just waiting for his phone call,” Sara Young said, explaining the rollercoaster she was on after giving birth.

But with Eleanor now turning 6 months and reaching all her milestones, they hope her story will inspire other parents who feel the weight of their child’s diagnosis.

“For other families, if they see themselves in a situation like this, everything in life is just a season. And, you know, it may not be the best and most exciting season of your life, but you can come out of it. And there’s joy,” Sara Young said.

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About the Authors

Patty Santos joined the KSAT 12 News team in July 2017. She has a proven track record of reporting on hard-hitting news that affects the community.

Gavin Nesbitt is a photojournalist and video editor who joined KSAT in September 2021. He has traveled across the great state of Texas to film, conduct interviews and edit many major news stories, including the White Settlement church shooting, Hurricane Hanna, 2020 presidential campaigns, Texas border coverage and the Spurs.

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