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Madeline “Maddie” Ramon is used to questions about the scars often poking out the top of her shirt. “When I was younger, I had a heart problem and I had heart surgery,” she tells people. “I’m good now.”
Katie Ramon smiles when she hears Maddie say that. Calling Maddie “my little patchwork baby,” Katie considers the scars a source of pride. “You’re a fighter,” Katie has often told Maddie. “Tell people what you’ve been through.”
Three Heart Surgeries
The day after Maddie was born, a team of doctors and nurses entered Katie’s room. “We think that something with the heart on the left side didn’t form correctly,” a doctor said. Doctors transferred Katie to another hospital in Austin, with more specialized care.
She had just left her newborn swaddled in the nursery. She returned to find her intubated, “with wires and tubes everywhere.” A nurse offered to take a picture of Maddie. That’s when it hit Katie that she might never see her daughter again.
At the next hospital, Katie learned Maddie had hypoplastic left heart syndrome, a congenital heart defect that occurs when the left side of the heart doesn’t develop properly. Without surgery, the condition is fatal, usually within the first few weeks of life.
Maddie was 10 days old when she had the first of three required surgeries. Called the Norwood procedure, it allows the right ventricle to pump blood to both the lungs and body. A shunt directs the blood to the lungs. In order to connect her to a heart-lung bypass machine, doctors had to stop her heart. “I can’t explain that feeling of being absolutely terrified knowing that was happening,” Katie says.
Maddie came out of surgery so swollen she was nearly unrecognizable. She was hooked up to several machines, and a large patch covered her still-exposed chest until the swelling subsided. Maddie came home for a few weeks, then returned to the hospital for the second surgery, called the Glenn. She under-went the third and final surgery, called the Fontan, at 18 months.
“I was worried about her quality of life,” Katie says. “The doctors said she should never get pregnant and she’d never be an athlete, but other than that, she can have a pretty normal life.”
A Miracle
Over the years, Maddie had some medical setbacks: an episode with internal bleeding, growing capillaries that needed to be blocked off. Yet through it all, she made friends, played in the neighborhood, rode a bike and even horses and went snow skiing.
In 2019, Maddie graduated high school. She now works at a restaurant. “I know my limits,” she says. “If I’m not feeling okay, I’ll tell an adult around me.”
Katie knows her daughter is likely to one day need a heart transplant. But she prefers to think about all the years they’ve already enjoyed since that traumatic day when she thought she’d never see Maddie again. “When she was little, I never would allow myself to imagine her at certain ages, so now I’m just trying to enjoy her,” she says. “That she made it this far is just a miracle.”
Maddie shares her story as a volunteer for the American HeartAssociation’s Go Red for Women campaign in Austin. This signature women’s initiative is a comprehensive platform designed to increase women’s heart health awareness and serve as a catalyst for change to improve the lives of women globally.
The 17th Annual Austin Go Red for Women virtual luncheon will take place on Feb. 24, 2021, at 11:30 a.m. Visit austingored.heart.org to register and give.