After a heart murmur was detected in her newborn son, Kristen Holihan was told she could have him checked out at the local children’s hospital, or wait until after the Christmas holiday weekend.

She didn’t want to wait and soon got devastating news: Tyler Matesen, just 2 days old, had dangerously low oxygen levels and would need immediate surgery for critical congenital heart defects.

“They were surprised he didn’t arrive by ambulance,” she said of that day in 1995. “If we would have taken him straight home, he may not have made it.”

Congenital heart defects are the most common birth defect, affecting about 40,000 babies born in the United States each year. About a quarter of those require surgery or other potentially lifesaving treatment during the first year of life.

Tyler Matesen was 2 days old when he had his first open-heart surgery on Dec. 24, 1995.

Tyler Matesen was 2 days old when he had his first open-heart surgery on Dec. 24, 1995.

Tyler had pulmonary valve stenosis, a narrowing of the pulmonary valve that can make it difficult for blood to move from the heart to the lungs to pick up oxygen. He also had four holes in his heart: one in a lower chamber and three in the upper chambers.

Doctors tried to open the valve and increase blood flow, but were unsuccessful. The next day, Tyler underwent two heart surgeries as doctors tried to get his tiny heart working properly, ultimately adding a shunt to allow more blood to pass to the lungs to get oxygen.

More than a month and six procedures later, including three open-heart surgeries, Tyler was able to go home, a prospect that terrified Holihan.

“I wanted him to come home with every monitor they could give me, but the doctors told me, ‘You’ll never learn to live without them otherwise,’” she said. “Needless to say, his first birthday was a huge celebration.”

Tyler met regularly with a cardiologist, but mostly grew up as a regular kid in Sacramento, California. He played soccer and joined Little League, making time to rest if he got tired.

In 2001, Tyler’s sister Makenna was born with congenital heart defects.

“When they told us she had a heart murmur, I fell apart,” Holihan said. “I couldn’t believe it was happening again.”

Like Tyler, Makenna had pulmonary valve stenosis and a ventricular septal defect, but her condition wasn’t as severe and has not required surgery.

Tyler Matesen with (from left) his stepfather Chris Holihan, sister Makenna Matesen and mom Kristen Holihan.

Tyler Matesen with (from left) his stepfather Chris Holihan, sister Makenna Matesen and mom Kristen Holihan.

By 2010, Tyler, then 14, was tiring more easily. An annual checkup showed his oxygen levels had dropped, and he was soon scheduled for surgery to replace his pulmonary valve and close the three holes in the upper heart chambers.

Tyler was soon back to wake-boarding and long-boarding. Within six months, he shaved three minutes off his mile time in gym glass.

“I could finally keep up with my friends,” he said.

The experience inspired now 20-year-old Tyler to be an example for other pediatric heart patients and show them what they can overcome. He bristles at the feelings of being different as a kid, each time a PE teacher asked if he could do something, or the times kids would taunt him about not being able to participate in an activity because he had had heart surgery.

“I want other heart patients to know that nothing can stop you from doing what you want to do,” he said. “You have to keep believing in yourself and have a good support system.”

While Tyler’s medical history stymied his dream of joining the U.S. military, he is attending college and pursuing a career with the California Highway Patrol.

Holihan got involved with the American Heart Association when Tyler was a toddler, sharing his story at community events, participating in local Heart Walks, serving on the board of the local affiliate and lobbying on behalf of research funding and heart health issues, particularly advocacy efforts to require pulse oximetry screening for newborns.

Tyler’s condition may have been detected earlier using the non-invasive test, which is now mandated by most states, including California, for all newborns.

“My work with the AHA has helped me in helping others, which is healing,” she said.

Photos courtesy of Kristen Holihan