Kristen Holihan's Why

In 1995, Kristen Holihan got a wonderful Christmas present four days early — the birth of her son, Tyler Matesen. But she would not take him home until after the new year, and then with overwhelming fear and anxiety.

Kristen Holihan and son, Tyler

Doctors detected a murmur in the newborn’s heart and suggested that Kristen get him checked out at the local children’s hospital after the holiday weekend. But the 30-year-old new mother didn’t want to wait and took Tyler directly to the hospital.

It was a good thing she didn’t wait — at 2 days old, her son had dangerously low oxygen levels and would need immediate surgery for critical congenital heart defects. “If we had taken him straight home, he might not have made it,” she said.

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 his mother.

“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. “I was so afraid that something would happen at home and in my care. Needless to say, his first birthday was a huge celebration.”

In 2001, Tyler’s sister Makenna was born with congenital heart defects. “When they told us she had a heart murmur, I fell apart,” Kristen 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 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. Though none of his teammates knew his history, “I noticed I didn’t have the energy all of my friends had while going through puberty,” he said. “It was like having all of this gas you need for a fire, but no oxygen in order for it to catch.” He didn’t like swimming because it meant he had to explain his scars.

By age 14, Tyler was tiring more easily. An annual checkup showed his oxygen levels had dropped. His pulmonary valve had been removed completely as a newborn. Surgery was now scheduled to replace his pulmonary valve with a porcine valve and to close the three holes in the upper heart chambers.

Though he was nervous about the surgery, Tyler was soon back to wake-boarding and long-boarding. Within six months, he shaved three minutes off of the time it took him to run a mile in gym glass. “I could finally keep up with my friends,” he said.

The Holihan family: Tyler, Chris, Makenna and Kristen

Now 20 years old, Tyler wants to be an example for pediatric congenital heart patients and show them what they can overcome. “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 military, he is attending college and will soon have his associate’s degree in history and begin work on a bachelor’s in business. His dream is to work for the California Highway Patrol.

Kristen 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, a non-invasive test that might have detected Tyler’s condition sooner.

Kristen’s why? “My advocacy work with the AHA allows me to help others, and that is healing,” she said.

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