After facing nine open heart surgeries and one brain surgery, Graci, at age 15, is the strongest person her mom Chrystie knows.
Graci, who is a twin, was diagnosed with Aortic Stenosis at 2 days old and faced her first open heart surgery to remove an aneurysm on her heart at just 6 weeks old. She has gone into congestive heart failure, suffered from Endocarditis, , Mitral Valve Regurgitation, Pulmonary Hypertension, a brain bleed, seizures, abnormal heart rhythms, and she has three artificial valves in her heart. She’s been on ECMO three times. Through it all, she never gives up and fights bravely with her mom by her side. Chrystie has been with Graci for almost all of her multiple hospital stays.
“Before I had the girls, I didn’t know how common heart defects are, with one in 100 babies born with CHD,” Chrystie said. “You don’t realize that there are more kids born with CHD than have pediatric cancer! It’s hard enough being a parent but having a child with complex medical issues makes it even more challenging. But it also makes your bond stronger. I tell her that even if I had known ahead of time what was in store for us, I still would’ve chosen her, without a doubt. Graci’s my best friend.”
Advocating for a child with medical issues like Graci’s is not easy, but Chrystie credits the Sibley Heart Center Cardiology doctors with helping her ensure that Graci always gets the best care possible by listening to her concerns.
The Sibley doctors have saved Graci’s life many times,” Chrystie said. “They’re quick to react when I feel like something’s going on with her. Because they know that I know Graci, they trust what I’m telling them and back me up.”
Chrystie says that the most important advice she can give to new heart families is to remind them that they’re not alone. She advises using the resources available, such as Kids at Heart and Camp Braveheart, to connect with other parents and kids with CHD. She also says it’s important to stay in touch with CHOA social workers, who can connect families to resources that will help them survive stressful hospital stays.
“I’d also say that kids are way more resilient than we give credit for,” Chrystie said. “It’s scary to see your tiny baby hooked up to machines and to see scars on their perfect little bodies. They look so fragile, and they are. But they’re also strong.”
Chrystie has many tattoos, but she says one of her favorites is a tattered heart with stitches that says “Beautiful.” As she talks to her daughter about her scars, she encourages her to never be embarrassed by them.
“I tell her, ‘What makes you different makes you special,’” Chrystie said. “Her scars are beautiful. They show that something tried to beat her, and she won.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.