SAN ANTONIO — Congenital heart disease makes up to 1 – 2% of all pregnancies and one family is giving others hope where the darkest days are now behind them.
Sara and Collin Young learned just hours after Eleanor was born that something was wrong. Her heart was the size of a walnut and the consistency of tissue paper.
“It’s something that we never expected we would experience,” Sara said.
“With Eleanor it was a huge learning curve," Collin said.
The Young's said their daughter's breathing was fine, but she looked very purple.
"Because she wasn’t getting that oxygen to her body,” Sara said.
Collin says with the help of hospital staff, “You build lifetime relationships within the hospital."
The Young's built that life-long relationship with Dr. Jennifer Johnson, pediatric cardiologist at Pediatrix Cardiology of San Antonio.
“Patients with transposition usually have surgery within the first ten days of life,” Johnson said.
Transposition of the great arteries is when the two arteries in the heart are in abnormal positions. That was the case for Eleanor who had open heart surgery at just eight days old. After a lifesaving operation: balloon atrial septostomy, which creates or enlarges a hole between the upper chambers of the heart to allow red and blue blood to mix.
“For the surgical team and cardiology, it’s sort of scary, because it’s an everyday occurrence for us," Johnson said. "But for parents that are, especially for patients that are not prenatally diagnosed, this can be quite a shock.”
The surgeries were successful and the family took the healing process one day at a time.
"Our first big challenge was being in the hospital for a whole month," Sara said. "We have a two-year-old son as well. So having to coordinate taking care of both of our babies in two different places.
Big brother Griffin is his little sister's protector.
"He's fun he's a great brother," Sara said. "He loves giving her hugs and kisses."
The result of Eleanor's journey over the past six months - more than 200 sutures.
Dr. Johnson says congenital heart disease is not always diagnosed before the baby is born. There are resources available, like the group 'Mended Little Hearts of San Antonio' and support groups for families like the Young's.
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