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February 13, 2018

Congenital Heart Defect Awareness Week: Audrina’s story

By Tampa Bay Parenting

Melody Valve Procedure a Safer, Less-invasive Option to Open-heart Surgery

For 6-year-old Audrina, who has successfully survived two open-heart surgeries and multiple cardiac procedures to repair a congenital heart defect, six years can seem like a lifetime.

It actually is a lifetime in medical technology.

Technology, procedures, medical equipment and devices are improving daily for patients like Audrina who receive patient-centered cardiac care from Johns Hopkins All Children’s Heart Institute.  According to the American Heart Association, congenital heart defects like Audrina’s are the world’s most common birth defect, and about 25 percent of children born with a congenital heart defect will need heart surgery or other interventions to survive.

When Audrina needed heart surgery to replace her pulmonary valve, which will require replacement every few years as she grows, her family found that Johns Hopkins All Children’s Hospital now offers a simpler, safer and less invasive surgery: the Melody valve.

“The Melody valve allows replacement of a pulmonary valve through a vein in the groin—the femoral vein—or neck—the jugular—as opposed to another open-heart surgery,” explains Gary Stapleton, M.D., Audrina’s cardiologist and the division chief of pediatric cardiology and medical director of the cardiac catheterization lab at Johns Hopkins All Children’s.

The procedure is much less invasive and usually requires 23 hours of in-hospital observation as opposed to surgery, which typically requires a one-week stay in the cardiovascular intensive care unit. The patients can also return to their normal activities within a week of the procedure as opposed to surgery, which requires significant activity restrictions for up to eight weeks.

“Audrina has already had two open-heart surgeries, so by doing this procedure we were able to avoid a third open-heart surgery in the first six years of her life. With each open-heart surgery, there is increased risk of bleeding or damage to the heart due to significant scar tissue that builds up in the chest,” Stapleton says.
Audrina’s parents were understandably thrilled to see that risk reduced.

“Because Dr. Stapleton and the heart institute added this innovative technology, it meant we didn’t have to go out of state to have this procedure done,” Audrina’s mom, Rachel, explains.

Unfortunately, Audrina is likely to need additional procedures down the road.

“We are hopeful that the Melody valve will last for several years. At that point there may be the ability to implant a second valve inside of this one when the need arises, although I suspect she will need another open-heart surgery to put in a larger diameter conduit when she is a teenager or young adult to accommodate for her growth,” Stapleton explains.

The American Heart Association funds more cardiovascular research than any U.S. organization except the federal government. Because of advancements in research and technology, more infants and children with congenital heart defects survive to adulthood. But despite the progress made, more research is needed so kids like Audrina can live long, healthy lives.

“Audrina is so active. She is living a normal life with ballet, gymnastics and tumbling. My wish is that every child who faces a congenital heart defect has the same opportunity,” Rachel says..

Congenital Heart Defect Awareness Week is Feb. 7-14. For more information about congenital heart defects, visit www.heart.org/chd.

This story was a joint effort between Johns Hopkins All Children’s Hospital and the American Heart Association.

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