Amy Verstappen of the Adult Congenital Heart Association tells me when she was born, doctors knew right away there was a problem.
"I looked blue, I had a very loud heart murmur," Verstappen said.
She had a congenital heart defect and like many, even kids today, she was treated and then told all is well.
As an adult she was also told the heart problem was no longer a problem. shot]
"Before I got pregnant, I went to the cardiologist and I asked if I needed special care and I was told no," Verstappen said.
But shortly after giving birth, her heart started to fail.
And a report from the Journal of the American Medical Association shows she's not alone.
The report reads: "The frequency of hospitalizations for adults with congenital heart disease has grown at a rate more than twice that of children."
That's why Amy started the Adult Congenital Heart Association.
"Nine out of ten people are like me, they think they are fine, they feel well, and they don't realize their heart might be getting into trouble," Verstappen said.
So the goal is to raise awareness among patients *and doctors.
Dr. Yuli Kim of Penn Medicine is one of only about 100 doctors nationwide formally trained to treat adult congenital heart disease.
That's compared to about 3,000 pediatric heart specialists.
"Our job really is to get the word out there that we are a referral center, we will help care for your patients, we do recommend everyone with adult congenital heart disease has a once over," Dr. Kim said.
Amy had to have multiple procedures to survive.
She is now well and hopes to prevent others from going down the same misguided road she traveled.
Recently a new training program for doctors has been approved.
So as more of these patients grow up, the hope is we will have enough specialists to take care of them.