Despite everything seven-year-old Anderson Smith has been through, you would never guess it by looking at him today.
Mayor Sheryl Ellis declared the week of Feb. 7 as Congenital Heart Disease Awareness Week in the city of Ardmore.
According to the Centers for Disease Control, congenital heart defects are the most common type of defect in the nation, and almost 40,000 children are born every year with some type of CHD.
For the Smith family of Ardmore, this issue hits incredibly close to home because their son Anderson was born with a condition known as hypoplastic left heart syndrome. Because of HLHS, Anderson has already had four open heart surgeries and been hospitalized multiple times, all before his eighth birthday. He will also take heart medication for the rest of his life. His mother, Meredith, described the condition.
“HLHS basically means that he has half a heart,” Smith said. “His left ventricle was severely underdeveloped so we had to go through a series of surgeries basically re-plumbing his heart so that the right side does all of the work.”
Smith said without medical intervention the condition is typically 100 percent fatal within the first two weeks of life. She said the entire family was shocked and devastated when they found out Anderson had HLHS when he was only 28 hours old.
“There is no known cause or cure for HLHS,” Anderson said. “I had a perfect pregnancy, and everything seemed great. When he was born he weighed nine pounds, three ounces, and looked perfect.”
His pediatrician detected a heart murmur and ordered an ECG, just to be on the safe side. After discovering his condition, doctors scheduled surgery immediately.
“At seven days old he had his first open heart surgery,” Smith said. “With HLHS, all of the surgeries are staged, so we knew that he would have to have at least three open heart surgeries by the time he was two or three years old.”
Anderson’s first surgery bought him some time to grow before doctors went back in for his second, more extensive surgery.
“I don’t think anything can prepare you when you see your seven-day-old baby come out of the operating room after having open heart surgery,” Smith said. “It’s shocking.”
When he was five and a half months old, doctors began the first stage of what’s known as the Norwood procedure, a series of three operations designed to re-plumb the heart. There is about a 70 percent survival rate when children undergo these operations.
“That was the closest we’ve come to losing him,” Smith said. “We went 12 hours without seeing him. He was in the OR for 10 hours and was so unstable in the ICU in the two hours following that we could not go back to see him. When they let us in there were almost a dozen doctors and nurses in there trying to keep him alive.”
Smith said the following week was terrifying as the family watched Anderson try to pull through. However, about a week later, he turned a corner and started healing quickly.
“He was in the ICU for three weeks and one day which was really incredible considering the first week was so bad,” Smith said.
Anderson’s next surgeries occurred when he was 13 months old and 25 months old. He also had eight cardiac catheterizations and multiple stays in the hospital. Smith said these hospital visits were necessary because children with HLHS are more susceptible to illness.
Smith said that Anderson sees his cardiologist every six months, and may ultimately one day need a heart transplant. However, they want to delay that as long as possible.
“The goal is for Anderson to rock the half of his heart that he’s got for as long as he can. Because transplants are not a cure. Surgery is not a cure either. You are just trading one set of issues for another,” Smith said. She added that for right now, everything is going great.
“Here he is doing well at almost eight years old,” Smith said. “He’s in second grade at Plainview, doing great in school. He also participates in Broadway Kids and started voice lessons this year.”
The Smith family is passionate about raising awareness of congenital heart defects.
“The research for congenital heart defects is grossly underfunded. We want to help spread awareness because that’s what will ultimately lead to better outcomes for these kids. If we can help increase awareness that will increase funding, so that’s incredibly important to our family,” Smith said.
For more information about CHD or to make a donation to help fund further research, Smith suggests The Children’s Heart Foundation, at www.childrensheartfoundation.org.