NEW YORK — Here's the bad news: Congenital Heart Disease (CHD) is the most common birth defect in the United States affecting one in every 100 babies.
Here's the good news: Treatments have advanced to the point where more than 90% of these babies live into adulthood.
Here's the bad news: Many of them do not seek out the specialized care they need.
It's a warning not lost on 31-year old Michael Pernick, a voting rights attorney in New York City.
His days can be long and stressful but you wouldn't know it.
"I actually feel better than I ever have before."
For one thing, Michael is jogging for the first time ever.
From birth, he's been living with a condition known as Tetralogy of Fallot which is a combination four separate heart abnormalities.
"Within a day or two they rushed me in for emergency open heart surgery," he recalled.
"I had a second surgery when I was about a one-year-old and a third open heart surgery when I was 22."
Cardiologist Dr. Ali Zaidi says most adult cardiologists are not trained in CHD.
In some hospitals, pediatric cardiologists aren't allowed to see patients over 18.
And after years of visiting specialists, many young adults fall through the cracks.
"They're feeling good, they go to school, they're getting ready for college, they're going to get the first job," said Dr. Zaidi.
He says young adults feel that they need not see a heart expert ever again.
Michael stopped seeing a specialist when he moved for a new job until a heart valve infection sent him to the ER.
He then had a fourth surgery.
"It's really exciting to be able to move forward with my new valve," he admitted.
Now healthy again, he's a speaker and advocate for what's known as transition of care: he's encouraging other young patients to find adult heart specialists before they need them.
Not every adult CHD patient lives in a metropolitan area, so Michael recommends checking the directory on the Adult Congenital Heart Association to find a listing for the nearest clinic.
Dr. Zaidi said it's important parents encourage their kids and college age students to follow up with dedicated Adult Congenital Heart Disease care.