Bowen's Heart: Family Rallies Around Baby Boy Fighting Rare Heart Disease

PHOTO Hypoplastic Left Heart Syndrome

Bowen Matthew Hammitt came into this world on Sept. 9, at 7 pounds, 7 ounces, with a wisp of light brown hair and a heart condition that threatened his survival.

"When he came out, I thought he would look different," says his mother, Sarah Hammitt, 31. "[But] he looked totally fine. So it was hard to see a baby that looked so beautiful and know that his insides weren't perfect. I kind of felt like, This isn't real. It couldn't be.'"

Bowen was born with Hypoplastic Left Heart Syndrome, a rare congenital defect in which the left side of the heart is dangerously underdeveloped. In babies with HLHS, the left side of the heart cannot pump blood, so the right side must supply both the lungs and the body. Without surgical intervention, the condition is fatal.

"Any parent would say that watching your child go through something like that is much worse than going through it yourself," says Bowen's father, Matt Hammitt, 31. "You want to take their place, but you can't. That's been the most difficult part for me."

'All of Me'

The Hammitts learned of Bowen's condition after an ultrasound about halfway through Sarah's pregnancy. Already the parents of two girls, Emmy, 4, and Claire, 2, Matt and Sarah struggled with their emotions after receiving the news. Bowen would face three risky surgeries early in his life to repair his heart. Even with the advances in surgical treatment, about 30 percent of babies born with HLHS die before the age of five.

"It was hard to know that I had to fall in love with somebody that had those odds," says Sarah.

Matt Hammitt, who is the lead singer of the Grammy-nominated Christian rock band, Sanctus Real, turned to music for solace. "I had all kinds of questions and emotions, and the way for me to deal with that was writing music," he says. This winter, he plans to record an album of songs dedicated to his son and to other families going through difficult times with sick children.

To Learn More About Bowen And His Family, Visit Their Blog By Clicking Here

The first song he wrote for Bowen is a hauntingly beautiful lullaby about a father unsure how much of himself to invest in a child who could be taken away from him. "That's a really hard thing to do, to live knowing that at any moment you could lose your child," Matt says. Ultimately, the song's title, "All of Me," provides the answer Matt struggled at first to find.

"We Thought for Sure He Was Gone"

On September 13th, four days after Bowen was born, he underwent his first open-heart surgery at C.S. Mott Children's Hospital in Ann Arbor, Michigan. The procedure successfully inserted a shunt into his heart and, after several hours at Bowen's bedside in intensive care, Sarah and Matt finally felt confident enough to go next door to their hotel room for some rest. A couple of hours later, the phone rang. "Two-thirteen a.m. I will never forget that time," says Matt.

Bowen's heart had stopped beating, and by the time the Hammitts reached the hospital, doctors and nurses were frantically trying to save his life. After about forty minutes, Sarah and Matt were losing hope. "They took us into another room," says Matt, "and we thought for sure he was gone." Sarah recalls she began to wonder how it was going to feel to be a mother who had lost a child. "We were just waiting for them to call out the time [of death]," she remembers. "I kept looking at the clock and, 'ok, when are they going to say it? Just say it.'"

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