Situation: Liam’s mom Darcy explains how they found out the news that stopped their world:
“Liam was a little over two when we learned about his condition. We had just moved here from England and we went to meet our new pediatrician in St. Louis for the first time.
She heard a heart murmur and wanted to run a few tests. The next day, we got a call from the cardiologist. That’s when your heart drops, because if someone is calling with OK news it’s a nurse, or it’s your pediatrician – it’s not a specialist. Everything in my world just stopped.
“He asked us to come in, but we were literally moving right then, and so we were at a gas station on Manchester Road in our U-Haul for 45 minutes talking to the cardiologist. We were told he had something called a sub-aortic membrane. The way his blood flows is a little bit different and it causes turbulence in his heart, so he gets this growth in his aortic valve. The only way to take care of it was open heart surgery.
“You’re so naive because you’re thinking this doesn’t happen to you. Two days prior we thought we had this healthy normal child and then two days later we were told he needed open heart surgery to survive.”
Liam, now 7, tells a more matter-of-fact version:
“It was on my aorta. It’s one of the top corners of my heart. Somebody had to fix it because I could have died if that didn’t happen.”
How United Way helped: As soon as she could, Darcy searched “sub-aortic membrane” online. The first result said it was a deadly condition. But a few more down was a link to the American Heart Association.
“Your heart is breaking because your child’s heart is broken,” she says. “The next thing you want to do is to fix it; how can I make my child OK?”
She says the American Heart Association has been a life-saver, for all of them.
“They’ve provided information that has helped us better understand Liam’s condition and make informed choices about surgeries and therapies,” she says. “And the more we know, the more peace of mind we have, because we know we are doing all we can to help our son.”
Liam had his open-heart surgery the day before his third birthday.
Today: “My heart doesn’t hurt at all,” Liam says. “The only things I can’t do is ride rollercoasters, because it might drop and it might hurt me, and I can’t play football or hockey. I can definitely play baseball.”
He can also play soccer. “According to him, he’s the best goalie in our town,” Darcy says. He loves school, reading, ice cream and being a Tiger Cub.
Liam carries just a few reminders of his diagnosis – a scar on his chest, a slightly smaller build than most kids his age, the knowledge that at some point, he’ll need surgery again.
“But does that matter?” Darcy asks. “He’s great, he’s alive. Thanks to the United Way supporting the American Heart Association, my child’s alive and my child’s here and he’s sassy and great and feisty. How can you thank someone for saving your child’s life?”
About American Heart Association: The American Heart Association supports education programs, community outreach and research intended to lower the incidence of cardiovascular disease and stroke.
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