When Andrew Testa was born in June 1995, his parents, Joe and Lisa, of Green, thought they had a healthy baby boy on their hands. Little did they know their world was about to change.
A routine checkup at 4 months old revealed Andrew had a heart murmur, which earned him a referral to Akron Children’s cardiology department.
“It was right after Thanksgiving that Andrew had a heart catheterization that showed he had a large hole in his heart,” said Lisa, an optometrist in Akron.
Under the care of pediatric cardiologist John Kramer (now retired), Lisa and Joe learned that Andrew had an atrial septal defect, cleft mitral valve and small ventricular hole.
Since his pulmonary pressure was normal, Dr. Kramer advised holding off surgery to give Andrew a chance to get a little bigger and stronger to withstand the operation.
“By June 1996, at exactly 1 year old, Andrew weighed 16 lbs.,” said Lisa. “We fed him nonstop. He ate every 2 hours around-the-clock, but was only up 10 lbs. from his birth weight of 6 lbs., 10 oz.”
At 16 months, a battery of tests ensured another underlying condition wasn’t causing Andrew’s failure to thrive.
“Once it was determined that all of his other tests were normal, Dr. Kramer made the decision that the time had come for surgery,” said Lisa. “The only problem – Akron Children’s didn’t have an open heart surgery program at that time.” (Akron Children’s started its heart surgery program in 2001.)
Dr. Kramer referred the Testas to the Cleveland Clinic, where Andrew’s repair was done.
After spending 30 hours in the Clinic’s pediatric intensive care unit, Andrew was up and walking within 2 days – something he struggled to do before his surgery because of his low energy.
“All in all Andrew spent 5 days in the hospital,” said Lisa. “By the time we went home he was doing things he couldn’t do before the surgery. It was incredible to see the difference in him. Two weeks later he was back at Children’s for his follow-up appointment.”
Leading a normal life
Andrew, now a college student studying computers at Stark State, leads a normal life with no restrictions, except the occasional ones imposed by his parents.
“The only thing I didn’t want him doing was playing contact sports, but that had more to do with his size and stature,” said Lisa. “At 5’7” and 100 lbs., Andrew is long and lanky and built more like a runner.”
As a high school student at Akron’s St. Vincent St. Mary, Andrew ran cross country for 4 years. He also completed a 60-mile backpacking trip in the mountains with the Boy Scouts and is looking forward to doing another one in New Mexico this summer.
“I don’t feel any different knowing that I have a congenital heart defect,” said Andrew. “I have always felt good and been able to keep up with my friends. My condition wasn’t something I ever tried to hide.”
“Much of why Andrew feels good and is doing well has to do with his parents’ vigilance about keeping him in our care,” Dr. Lane said. “Continuity of care and keeping regular follow-up appointments allows us the chance to pick up on things before the onset of symptoms. Once symptoms appear, problems are often farther along.”
Transitioning to adult congenital heart program
Dr. Lane took over Andrew’s care when he was 15, as he transitioned from a pediatric congenital heart patient into the adult program at Children’s.
Lisa and Joe made sure Andrew was seen annually up until the age of 5 and every 2 years after that.
“Transitioning a patient from the pediatric program to the adult program doesn’t happen at a single point in time,” said Dr. Ashish Saini, a pediatric cardiologist who also works with the adult patients. “It’s a process.”
Both the pediatric and adult heart programs are located in Akron Children’s heart center, which helps the transition go more smoothly.
“These kids are coming to the same place they’ve been coming to for years – the only difference is they are seeing a different provider,” said Deena Barber, BSN, RN, nurse program coordinator for Akron Children’s adult congenital heart program. “They have a sense of trust and familiarity, which is a huge advantage for us.”
A team approach is also important.
“We are very fortunate to work with adult cardiologists in the community,” said Dr. Lane. “Many of our patients have 2 and sometimes 3 cardiologists. I can’t take care of every heart problem a patient may have. We need the participation of the adult cardiology providers to treat acquired heart disease issues that often accompany aging.”
The doctors find themselves also counseling their patients on major life decisions.
“Our patients have so many questions as they become young, independent adults,” said Dr. Saini. “They want to know if it’s safe to have kids – could they pass on their congenital defect. Or, should they have babies at all if they feel their life expectancy is shorter due to their heart defect. They want to know if they’ll be around while their kids are growing up.”
Andrew is due back to see Dr. Lane in March when he can expect a full workup to look at his septum and where the patch was placed, check on any leakage around his mitral valve, and watch for cardiac rhythm disturbances.
Lisa is very grateful to Akron Children’s.
“I have come to find out congenital heart defects run in my family,” she said. “My grandmother lost a baby brother, and 2 babies in my mom’s generation died. If it wasn’t for the doctors in the heart center, I don’t think Andrew would be here right now.”