A new heart screening will save the lives of infants across Tennessee
To observe C.J. Parker today, you would never guess this active 3-year-old had a rough start in life. He scrambles upstairs to show me his train set in the playroom at his home in Oakland, where parents, April and Cameron Parker, tell me he wasn’t always this active. While easy going, C.J. was a lazy baby, lethargic, happy to observe the world from his crib.
“It got worrisome,” admits April, a hair stylist in Germantown.
That’s because a congenital heart defect was making his tiny heart work very, very hard. It beat so fast, it was like he was constantly running a marathon. At well-baby check-ups, their pediatrician described his heart as sounding noisy and slushy.
So at age five months of age, the young couple took their baby to see a pediatric cardiologist. That was when they discovered C.J. had a congenital heart defect called a pulmonary valve stenosis, a narrowing and stiffening of the valve that supplies blood from the heart to the lungs. The cardiologist told the Parkers they would have to operate — immediately.
Preparing for surgery
The news came as a shock. But their baby was scheduled for heart surgery on February 21, 2010. Though unnerving, the couple had several things working in their favor. April had reconnected with an old friend whose son had gone through a similar procedure; her knowledge proved invaluable.
“It was like I was supposed to come in contact with this girl again,” says April. And since Cameron works in the MED’s IT department, he has first-hand knowledge of the miracles doctors can perform. “I feel like we’re always in good hands. I know how good medicine is,” he says.
But once their son was on the operating table, the surgeons discovered something more: three pin-hole-sized holes in the upper right chamber of C.J.’s heart. Though it hadn’t begun to leak yet, if they didn’t operate, “he would have had a sick heart and eventually need a more substantive surgery,” says April. So the day lurched forward to an event far more profound: open-heart surgery. The wait was nerve-wracking.
Several hours later, they received the news they’d been praying for — the procedure was a success. C.J.’s color warmed from grey to pink, and a week later, he was jumping in his exercise saucer. His energy restored, April and Cameron saw a whole different child, one much more active and lively.
Heart screening required
Now doctors are optimistic that other families across Tennessee will experience similar results, thanks to a new rule that requires hospitals to screen newborns for heart disease before they return home to their family.
Congenital heart defects are the most common form of birth defects found in children. Approximately eight out of every 1,000 babies are born with some type of heart defect. While some are identified and repaired within weeks of life, others can go undetected for months or even years, compromising a child’s quality of life. Since the heart is the first organ to develop in the fetus, it’s fully formed just weeks after conception, abnormalities can occur during pregnancy. But the new screening will ensure that newborns are checked at birth for congenital heart disease before leaving the hospital for home.
The Critical Congenital Heart Disease Test measures the body’s oxygen levels by putting a probe on baby’s finger or toe, says pediatric cardiologist Vijay Joshi with Le Bonheur Children’s Hospital. If oxygen saturation is below 95 percent, the baby fails and further testing is given to rule out heart defects or disease.
“The goal of the new newborn pulse oximetry screening is to decrease the number of infants who are discharged home with critical congenital heart disease,” said Jean Ballweg, MD, a Le Bonheur pediatric cardiologist appointed to the Tennessee Genetics Advisory Committee in a recent release by the hospital. “The testing will not be 100 percent predictive, but we hope to improve the survival and decrease the morbidity for one of the most common birth defects for which we know we can currently provide successful treatment.”
A government task force made recommendations to pass the rule into law with hope of saving lives. Doctors at Le Bonheur perform approximately 450 heart surgeries a year, and of those, 50 are newborns. Joshi says this simple test will make a real difference, noting that if oxygen saturation is below 95 percent, the baby will receive a cardiac exam and echocardiogram (an ultrasound of the heart). Should these detect a problem, the baby will be referred to hospitals like Le Bonheur for further testing and possible surgery.
“The ideal situation is that a baby is diagnosed promptly and gets operated on in the first few days of life,” says Joshi. The sooner heart problems are identified, the better chance the child will have at a fully functioning life.