Will We Be Able to Hold Him?

When the Dyers learned their unborn child had a heart defect, they didn’t know what to expect — but knew UVA was the place to be

For any parent, a first child’s birth is understandably an anxious time. For Lisa and John Dyer of Henrico County, Va., it was particularly worrisome. More than 20 doctors, nurses and other medical staff were standing by in the delivery room when the Dyers welcomed their son, Rocco, into the world.

"No one knew what to expect," Lisa recalls. "We weren’t sure if we’d be able to hold him, if he’d cry or if he’d be blue."

Nearly eight months before Rocco’s birth, a routine ultrasound revealed that his heart wasn’t normal. A more detailed ultrasound at UVA Children’s Hospital showed that Rocco had double outlet right ventricle (DORV) with malposed great arteries.

In other words, his main heart arteries were in the wrong place. This rare congenital defect often leads to blue baby syndrome or when a baby’s skin looks blue because the blood below is lacking in oxygen.

Finding Experts Close to Home

Learning this, the only thing the Dyers knew for sure was that their son would need some type of open-heart surgery very soon after he was born. And they knew they were in good hands by making sure he was born at UVA.

"When we were at my doctor’s office after first learning about Rocco’s heart," Lisa says, "she gave us a few options. We could go to Philadelphia or Boston, but she also said UVA has a great pediatric cardiology department. We felt confident that whatever was going on with our baby, that UVA would be able to handle it."

When Rocco finally arrived on June 12, 2009, "he was crying, he was pink and he looked and acted like a regular baby," Lisa says.

Before Rocco was sent to UVA’s Neonatal Intensive Care Unit for close monitoring, "It was unexpected and a huge relief to get to hold him," the mom says.

Fixing Rocco’s Heart

At 7 pounds 6 ounces, Rocco was healthier than expected so doctors decided to wait until he was a month old before doing his first surgery. His heart condition turned out to be a tricky case, explains pediatric heart surgeon James Gangemi, M.D.

Rocco’s two main heart arteries — the pulmonary artery and aorta — arose from the right ventricle. Normally, only the pulmonary artery that carries blood to the lungs for oxygen arises from the right ventricle. The aorta, which carries oxygen-rich blood to the body, normally arises from the left ventricle.

Besides this problem, there was a hole between his heart’s two ventricles and the right one was very small.

During Rocco’s first surgery, doctors determined that they would have to leave his two ventricles as one large chamber, rather than patch the hole between them. They also determined they’d need to create a new artery for supplying blood to Rocco’s body. In the meantime, they put in a shunt to temporarily do the pulmonary artery’s job.

At five months old, Rocco had his second surgery; lead surgeon Gangemi used one of Rocco’s major veins to supply blood to his lungs so that the shunt could be removed.

"His second surgery was as textbook as could be," Lisa says.

It also showed Rocco to be a good candidate for a future surgery. When Rocco is 3 years old, Gangemi and a team of doctors will move another vein to help Rocco’s heart pump more blood to his lungs.

Making His Parents Proud

"Rocco recovered from surgery like a rock star," his mom says.

And his heart problems don’t seem to be holding him back; by 5 months, Rocco was right on target developmentally — sitting up on his own, eating his first jar of baby food and making his parents very proud.

"Rocco’s prognosis is excellent. He’ll be able to run and ride bikes like other kids. He’ll just tire out a little quicker," Lisa says.

Becoming parents hasn’t been easy on the Dyers, especially having to spend the first several weeks of their baby’s life in the hospital. But all along, they never doubted their decision to go to UVA.

"There is an amazing set of doctors at UVA who really know their stuff. I saw kids there who were a lot worse off than our child and they walked away perfectly healthy," Lisa says. "We couldn’t be more pleased with the care Rocco received at UVA."