Congenital heart disease babies living to adulthood
CARBONDALE, IL – Your baby has a 1 in 110 chance of being born with some form of congenital heart disease. The good news is: Those babies are living much older than they once did, often into adulthood now.
Congenital heart disease is an umbrella title to a bunch of different heart problems, but the over-arching theme is that this is a heart disease you are born with and live with for your entire life.
Imagine the day your baby is born, the doctor puts a time limit on her life. “It would be unlikely that I graduate high school or develop physically,” Lena Morsch said she was always told as she was growing up. “I used to, when I was younger, think about dying. (Now) I’m hoping to go to 80 or 90.”
Morsch is beating the odds. As children with CHD become adults with CHD, doctors have to learn how to change their treatment.
“There’s a concept that people think once you have surgery that you’re fixed,” said Morsch. “But there is no such thing as a cure.”
Kristen Dunlap-Berg is right along with her. Both of them have congenital heart disease.
“I had my first surgery then (at 6 months old), and my second surgery a year later,” Dunlap-Berg said. She had two open heart surgeries as a toddler.
Morsch and Dunlap-Berg know each other the same way through the internet. A private Facebook group called Zipper Sisters connects women with CHD. It’s a group Morsch created many years ago to do just this: connect women with zipper like scars down their chests.
“We’re all pioneers. We’re the first generation of survivors,” Morsch said. These women with congenital heart disease are learning from each other.
“It’s good to get their insight, like when it might be, things to expect, things I might be feeling and to know ‘Oh, maybe this is something I should bring up to my doctor,'” said Dunlap-Berg.
They’re outliving expectations and medical research.
Adult congenital heart clinics are still a new specialty. There are only a few hundreds doctors and hospitals approved by the Adult Congenital Heart Association in the United States. You can see where they are located here.
Related article: Heart Disease: Leah’s Story