Taking her 9-month-old son Caden for a routine checkup, Xochitl Ayon wondered about the best vaccination schedule and development milestones such as when he should start pulling up.
A much bigger concern soon followed. What initially was diagnosed as a heart murmur turned out to be a troublesome piece of tissue growing inside Caden’s heart. It’s called a subaortic membrane, and it was located a mere 1 millimeter below his aortic valve. The cardiologist feared that it could eventually fuse with the valve, causing the valve to fail.
“He compared it to a skin tag,” Xochitl said. “It was just excess tissue that shouldn’t be there and could eventually cause an issue.”
Rather than wait for the tissue to cause complications, Xochitl and her husband Tony decided to have it removed. Caden was 13 months by then, and he recovered quickly.
Six months later, the doctor had more troubling news.
The membrane grew back.
“We had been told there was a 10 percent chance of it growing back,” Xochitl said. “And if it did, it probably wouldn’t be until Caden was in junior high.”
The Ayons decided to wait and watch for signals that the membrane was causing Caden problems.
All was well for about four years. Last August, they realized Caden wasn’t as energetic as usual. They knew it was time for the next operation.
A new set of doctors decided to be more aggressive in how much membrane they removed, also taking some of the surrounding muscle in hopes of preventing regrowth. This also came with more risk – if too much muscle is removed, it can affect the heart’s conduction system.
Indeed, a bit too much muscle was removed, causing the lower part of Caden’s heart to stop working. Doctors installed a temporary pacemaker outside his body, then 10 days later gave him a permanent pacemaker to keep his heart beating a normal rhythm. This is especially important because there’s a lack of synchronization in Caden’s heart; his left ventricle is a few milliseconds slower than the right.
Caden started kindergarten in October, and turned 6 in March. He knows he can’t participate in contact sports because of his pacemaker, but Xochitl is careful not to burden him with many details of his heart history to keep him from becoming fearful.
One activity he and his family – which includes Caden and his 4-year-old brother Lincoln, and 17-year old stepbrother Alex – have become involved in is the American Heart Association’s Heart Walk in their hometown of Bakersfield, California.
Last year, “Team Caden,” collaborating with Moms with Heart, raised $5,000 to go toward pediatric research. (Caden also was featured in a “Have a Heart” campaign benefiting the AHA through the Stater Bros. grocery stores.)
The American Heart Association funds more cardiovascular research – including research for children like Caden – than any organization outside the federal government, having invested in excess of $3.5 billion. The organization has funded research by 13 Nobel Prize winners and has been part of many lifesaving advancements such as the first artificial heart valve, cholesterol-inhibiting drugs, heart transplantation, and CPR techniques and guidelines.
Supporting the AHA’s work toward research on congenital heart defects is important for the Ayon family, who still seek answers as to why this happened to Caden and whether his siblings or future children could be at risk.
“Who knows if we’ll ever have that answer,” Xochitl said. “But we want to work to support that research.”
Photos courtesy of Ayon family
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