While the majority of heart disease occurs in older adults, a small segment of the population — about one in every 110 babies — is born with congenital heart disease. Of those patients, heart valve disease comprises “a fair bit of that,” says Evan Zahn, M.D., Co-Director of the Congenital Heart Program and Director of the Division of Pediatric Cardiology at Cedars-Sinai Medical Center.
“The difference in children and adults is mainly that they have far more years of life ahead of them,” he says. “There’s not a valve that exists today that will last 90 years, so it’s going to require multiple valve-replacement procedures throughout their lifetime.”
The transcatheter option means that young patients can have fewer invasive surgeries over their lifetimes. And that can be a priceless gift for both the patient and their family.
“To be able to have the procedure done in such a short time and be able to go back to school, back to cheerleading, made it so much easier,” says Shari Bethel, whose daughter, Kaitlyn, was born with congenital heart disease. Kaitlyn had her first openheart surgery when she was just 11 days old and her second one at the age of five. When she was 13, her cardiologist presented the option of inserting the Melody transcatheter pulmonary valve instead of going through another open-heart surgery.
“I’m so grateful for this option,” says Bethel, who lives in Michigan. “To have to take a child out of school for a month to recover — that affects everything. It affects her physically, educationally, emotionally. But with this, she had the surgery on a Thursday and was home the next day.”
Katilyn is now 15, and her family and their doctor anticipate the Melody valve will last at least another four years.
“What a gift that is for my daughter,” Bethel says. “And when that one needs to be replaced, they can put another [valve] inside it instead of doing open-heart surgery. And by then, who knows what technology will be available?”
Dr. Zahn says that the older the child, the greater the number of options for procedures. The option of transcatheter valve replacement has minimized risk and lowered morbidity rates.
“Any time you can increase the amount of time between surgeries, you’re improving the patient’s quality of life,” he says.
And Dr. Dennis Kim, Director of the Cardiac Catheterization Labs at Children’s Healthcare of Atlanta Sibley Heart Center Cardiology and Associate Professor at Emory University, says extending time between surgeries is vital.
“Transcatheter procedures for children aren’t meant to replace surgery, they’re meant to extend times between operations. Children and infants grow up, and their valves grow with them. So a valve that is surgically placed in someone who is two or three years old won’t be suitable down the road when they’re much bigger.”
While one of the greatest barriers to receiving the procedure right now is that not all doctors are qualified to perform it, or don’t understand its benefits, Dr. Kim says that is changing.
“More and more doctors are becoming educated, and advocacy groups like Mended Hearts are playing a big part in that. These days, it’s rare for a doctor not to be aware of the procedure, even if they don’t know how to perform it.”
As technology progresses and the implantation process becomes simpler, Dr. Kim predicts the procedure will become even safer, while at the same time valve durability will improve.
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