Raising awareness for congenital heart defects in SWFL and beyond
Every year, 40,000 babies are born with a congenital heart defect, making it the most common birth defect in the United States. Most causes of congenital heart defects are unknown.
A family in Southwest Florida shared their story about how their newborn survived in order to raise awareness about congenital heart defects.
Two days before his daughter was born, Nicholas Wesner says a fetal echo cardiogram, which is like an ultrasound, found a problem with her heart.
“We went from, ‘Hey, everything’s great,’ to, ‘Hey, you might lose your baby tonight,’” Wesner explained.
Despite it all, Selah Grace came into the world. For eight days, everything was fine.
“We had woken up in the middle of the night with all the nurses and the doctors running in because she was sleeping, and her heart rate was up in the 270s, and that was pretty, pretty scary,” The last thing you want to hear a doctor doing is yelling for a crash cart.”
At 18-days-old, Selah Grace had her first heart surgery. She’d have another at four months.
“Unfortunately, she did end up having side effects with this one,” Wesner said. “She suffered two strokes.”
Selah Grace has congenital heart disease, a condition more common than some might think.
In the United States, a child is born with CHD every 15 minutes, and that used to be a death sentence.
“We’ve heard stories of families who were sent home just 30 years ago with their child to say, ‘We’ll provide that palliative care to comfort them,’” said Kelly Glewa, the executive director of Southwest Florida American Heart Association.
That’s why American Heart Association is investing nearly $1 million dollars in CHD research.
“Because of our research funding, our children, our child survivors are living longer,” Glewa said.
Selah Grace is among those survivors.
“She is a feisty, sassy little 1-year-old,” Wesner said.
Nicholas Wesner is the lead coordinator for South Florida’s chapter of Conquering CHD Florida. Along with raising awareness and much more, the group creates care bags for CHD families during hospital stays.