Bethany Gooch was a fussy newborn.
She was born in Memphis, Tenn., in October 1997.
Her initial pediatrician’s visits didn’t reveal anything wrong.
But just days before Bethany’s first Christmas, her color seemed off.
Her parents took Bethany to the hospital, where she was diagnosed with a pair of serious heart defects — Tetralogy of Fallot (TOF) and pulmonary atresia.
“We were just so grateful to have caught it,” said her mother, Serena LaGesse.
A complicated condition
Bethany was born years before pulse oximetry screening became routine in most hospitals across the country.
With no sure way to detect them, Bethany’s heart ailments could have resulted in tragedy.
TOF changes the flow of blood through the heart. The condition occurs in about 1 in 2,500 babies born in the United States each year.
However, Bethany had the rarest form of the condition, and doctors weren’t sure how best to treat it.
Surgery kept her alive, but it was still touch and go for months, as it is for thousands of babies born each year with critical congenital heart defects.
“I had surgery about every six months,” said Bethany, now 19. “It was pretty much just a part of my life. I couldn’t do what other kids do because I’d get so tired.”
At the time, doctors didn’t know how to treat such a complicated condition, in part because the research and experience weren’t there.
“In that regard, she truly is an example of how you keep someone alive until new research shows a new technique or a new treatment,” LaGesse said.
A life different from other children
And so a couple times a year Bethany would go into the hospital for surgery to help keep her heart pumping.
When Bethany got to first grade, she realized that what for her was a normal life was different from other kids’ lives.
“I’d sit down and watch the other kids run,” she said. “Whenever there was recess, I had to take naps.”
When she was 8, a new surgical procedure allowed doctors to close a hole in her heart.
“My skin turned from bluish to pink, and I could breathe so much better,” Bethany said.
Another turning point came when she could go to Eva, Tenn., to a camp for kids with heart disease. It made Bethany feel like she wasn’t alone.
“I made really good friends,” said Bethany.
One new friend was a girl named Sarah Theobald, who had the same conditions as Bethany. When Sarah passed away it made Bethany even more determined to fight.
“She taught me to never give up, and she told me she’d be chasing purple butterflies,” Bethany said.
It was a phrase Sarah used a lot as they dealt with the deaths of friends over the years, said Bethany.
“To help me deal with the grief, she’d say they were chasing purple butterflies,” she remembered.
Bethany said the memory of her friend helped see her through several more surgeries, including a heart valve replacement in 2015.
Congenital Heart Defect Awareness Week began Tuesday. As with many other survivors, each new development has led to a new surgery that improves Bethany’s life.
She has found reason to believe she can live a normal life and now plans to work in the medical field.
“I always wanted to [be a nurse], but I just didn’t think I could,” she said. “Now I know I can.”