Meet Carter: 2022 Family Advocacy Day Champion

Carter is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Carter and his family will discuss his health journey, Cleveland Clinic Children’s Hospital for Rehabilitation’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Carter.

Carter was diagnosed with congenital heart disease when he was just three days old and spent time in the NICU at Cleveland Clinic Children’s Hospital. He had critical aortic stenosis and blood was not flowing properly from his heart.

‘It was a complete shock and devastating,” says Amy, Carter’s mother. “Our emotions were all over the place and we were concerned about his 2-year-old sister at home. Most of all, we were scared we may lose our child.”

After his aortic valve balloon appeared unsuccessful, the doctors determined he would need a series of three open heart surgeries to create a single ventricle circulation. The first surgery happened right away.

Eventually, Carter came home with a nasogastric (NG) tube, several medications and required around-the-clock care. Akron Children’s was closer, so their staff provided in-home care. At five months old, he had his second open heart surgery and proved to be more stable. 

Following these procedures, Carter had a fistula repaired and surgery on his eye. Then, at 4-years-old he had his third open heart surgery. Play and pet therapy and a psychiatrist helped him navigate growing anxiety.

“We opted to put him in counseling closer to home to help him with separation anxiety, and other fears that came along the way,” says Amy.

For several years, Carter was doing well and enjoying school, gaming and camping. Most recently, he needed an extensive surgery to repair a leaky aortic valve and hole in his heart. 

The 12-hour biventricular conversion surgery was a success. After surgery he worked with cardiologists, physical, occupational and art therapists while in the hospital. 

Now 11-years-old, Carter is doing well. “My Children’s hospital is important to me because they have the best nurses and doctors and they saved my life four times,” says Carter.