I24 -- June 2008 -- Adult Heart Defect

Intro: Fifty years ago many babies born with congenital heart defects were not expected to live into adulthood. But thanks to advances in medicine, most of these babies can now expect to live long, full lives. That's great news, but the problem is they sometimes don't get the medical care that they need. More from Mayo Clinic.

WHEN YOU WATCH KYRA [KEE-RAH] RAY MOVE, YOU'D NEVER GUESS SHE WAS BORN WITH A CONGENITAL HEART DEFECT.

"WHAT IT'S CALLED IS TETRALOGY OF FALLOT. IT'S ONE OF THE MOST COMMON OCCURRING COMPLEX DEFECTS."

KYRA'S HEART HAD FOUR ABNORMALITIES. THE PULMONIC VALVE WAS NARROWED, AND THERE WAS A HOLE IN THE SEPTUM, OR WALL BETWEEN THE RIGHT AND LEFT VENTRICLES. ALSO, A MAIN ARTERY WAS IN THE WRONG PLACE. THESE ISSUES CAUSED HER RIGHT VENTRICLE TO GET THICK BECAUSE OF ALL THE EXTRA PUMPING IT HAD TO DO. AT AGE 4, KYRA HAD SURGERY. SHE WAS CONSIDERED CURED.

"THEN I STARTED DEVELOPING SYMPTOMS. SHORTNESS OF BREATH, ELECTRICAL CONDUCTION PROBLEMS, ARRHYTHMIAS,."

IT TURNS OUT SHE NEEDED ANOTHER VALVE REPLACEMENT. THE REPAIRED VALVE STARTED TO LEAK. DR. KEITH OKEN SAYS KYRA WAS A VICTIM OF A COMMON MISCONCEPTION.

"WHICH IS THAT SHE WAS CURED WITH THE SURGERY SHE HAD. THAT IS RARELY THE CASE."

KYRA NEEDS CONTINUOUS, LIFE-TIME CARE. BUT THERE ARE NOT MANY CARDIOLOGISTS TRAINED TO MANAGE CASES LIKE HERS. THAT'S BECAUSE UNTIL RECENTLY MOST PEOPLE WITH CONGENITAL HEART DEFECTS DID NOT SURVIVE INTO ADULTHOOD. SO TO MAKE SURE KYRA STAYS HEALTHY, SHE SEES HER REGULAR DOCTOR AND EXPERTS AT MAYO CLINIC. PLUS SHE'S DOING WHATEVER SHE CAN TO KEEP HER HEART STRONG.

"EXERCISE IS IMPORTANT TO KYRA. NOT ONLY BECAUSE IT'S HEART HEALTHY, BUT BECAUSE IT MAKES HER FEEL NORMAL."

"IT MAKES ME FEEL GREAT TO BE ABLE TO KEEP UP WITH THE REST OF THE ADULTS IN THE CLASS."

FOR MEDICAL EDGE, I'M VIVIEN WILLIAMS.





Anchor tag: Kyra, who is married with two children, is very involved in promoting awareness about adult congenital defects. And Dr. Oken says the best way for people with adult congenital heart defects to get the care they need is to continue seeing their doctors, but also to see an expert in that condition.

For more information, visit the Adult Congenital Heart Association Website at www.achaheart.org, or visit our Website at …

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