A Family Expands After Heart Warrior’s Diagnosis

Cassie says that when you give birth to a heart kid, you become members of a whole new family, and it’s big – the family of heart warriors. That’s what happened to her 10 years ago when she turned up unexpectedly pregnant with her son, Lee. She and husband Scotty thought they were unable to have children when they discovered the very happy surprise.

Lee didn’t cry when he was first born, alarming his parents and alerting the attending nurse that something was wrong. His oxygen was very low and several congenital heart defects were discovered including Tetralogy of Fallot, pulmonary artesia, ventricular septum defect and MAPCAs. He also has 22q11.2 deletion syndrome (22q11.2DS), which is a genetic disorder. With this syndrome, a tiny piece of chromosome 22 is missing. This can cause many health problems including heart defects, developmental delays, kidney disorders, seizures and many more as there are 180 known symptoms.

Lee has already had two open heart surgeries and several heart catheterizations. He’ll have his third open heart surgery sometime in the near future. Benjamin Toole, MD, at Children’s Healthcare of Atlanta Cardiology’s Albany and Thomasville clinics has been Lee’s cardiologist since he was a baby. Cassie said they couldn’t ask for a better team for their boy.

“They don’t treat us like just another patient,” she said. “They treat us as part of their family. With Lee being special needs, you never what he’ll be doing that day or how he’ll be feeling. But no matter what Lee does, they understand and treat us with patience and respect, never pushing us out or hurrying us. Lee is very comfortable there, and he looks forward to seeing them.”

Although Lee has faced many challenges in his young life, he doesn’t let CHD keep him from doing the things he wants to do. He loves riding his dirt bike and his Polaris. He also loves Hot Wheels, Pokemon and his pets, which include two chihuahuas and four cats.

Cassie said she allows Lee to do some things that maybe other parents wouldn’t, but she knows how quickly things can change for a heart kid. Lee’s health was so fragile in those first years that they were unable to leave him with family members. They had to be so vigilant about germs to protect him that their world became very small.

“We let him enjoy life to the fullest today because tomorrow isn’t promised,” Cassie said.

Cassie said that groups like Babies Can’t Wait and CHOA’s Kids at Heart were big supports for her family, especially when they couldn’t be around many people when Lee was little. When she’s in the hospital with Lee, she said she never misses a Kids at Heart dinner if they come during his stay. The support from other heart moms is invaluable.

“Many of them we haven’t met in person and probably will never meet in person, but we’ve watched each other’s kids grow up, and we’re there for each other,” she said.

For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.

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