The Beat Goes on for Young Heart Patient

LEXINGTON, Ky. (Feb. 14, 2019) — After a normal pregnancy and uneventful delivery, Sarah and Eric Dieffenbach were thrilled to welcome baby Lincoln to their family in April 2018. They had no reason to suspect anything was wrong with their baby; sure, he was a little congested and was a "belly breather" - his abdomen expanded and contracted with each breath - but that's not uncommon in infants.

But at his two-month check-up, his pediatrician noticed Lincoln had a heart murmur. Often heart murmurs are innocuous, but his shallow breathing and "failure to thrive" - meaning Lincoln wasn't meeting his growth and weight milestones - indicated something more serious. His pediatrician recommended Sarah and Eric visit Dr. Abeer Hamdy, a pediatric cardiologist at Kentucky Children's Hospital (KCH).

Lincoln was diagnosed with a large ventricular septal defect (VSD), or a hole in the wall of the heart that separates the heart's lower chambers. In a healthy heart, the right side pumps blood to the lungs to get oxygen, and the left side pumps the oxygen-rich blood back to the rest of the body. A hole between those two chambers allows the oxygenated blood to mix with the deoxygenated blood, which makes the heart have to work harder to provide enough oxygen to other tissues in the body. On top of that, Lincoln had mitral valve regurgitation, or a "leaky valve." The mitral valve in his heart didn't close tightly enough, and blood flowed backwards into his heart.

Hamdy referred the Dieffenbachs to the chief of pediatric cardiothoracic surgery, Dr. James Quintessenza, or "Dr. Q" as he known to patients, families and staff. Dr. Quintessenza leads the KCH half of the Joint Pediatric Heart Care Program, a collaboration with Cincinnati Children's that combines the strength of UK HealthCare's advanced pediatric heart care with that of their Cincinnati counterpart. This partnership meant that Lincoln could have the life-saving surgery he needed without leaving Lexington.

"Dr. Q and his care team were great," said Sarah. "We were impressed with their honesty, clarity and confidence. We knew Lincoln was in good hands."

"Lincoln was very small," said Dr. Quintessenza. "He was in the first percentile of weight gain, meaning 99 percent of children his age weighed more than him."

It was Lincoln's low weight that presented the biggest threat.

"The heart circulation was so inefficient, between the hole and the leaky valve," said Dr. Quintessenza. "He was consuming a huge amount of calories, but it wasn't going to laying down protein or building muscle."

If left untreated, the low weight could lead to respiratory failure and ultimately, death.

"Fifty years ago, children like this wouldn't have survived," said. Dr. Quintessenza.

The VSD was patched, and Dr. Quintessenza and his team repaired the leaky mitral valve. Initially, Lincoln was expected to stay in the pediatric intensive care unit (PICU) for just three or four days, but that stay stretched to 13 days.

"It was a slower time than they anticipated," said Eric. "He didn't bounce back right away."

"We repaired the valve and patched the hole, but there was a lot of strain on the heart," said Dr. Quintessenza. "The heart function didn't come back right away."

This unexpected extended stay allowed the Dieffenbachs to experience the dedication, compassion and expertise of the PICU team.

"We can't say enough about the staff in the PICU," said Sarah. "They're like family. They were informed and optimistic. They calmed our fears daily during his recovery."

Now nine months old, Lincoln is, according to his parents, a completely different baby. He's playful and energetic, easy-going and sleeps through the night. He has no restrictions or deficiencies, and is in about the fiftieth percentile for weight, up from the one percent before his surgery.

"He's cleared for football!" Eric joked.

Sarah and Eric are eager to share Lincoln's story in the hopes that it will help other families in similar situation.

"You never expect to have a four month old with open heart surgery," said Sarah. "It's terrifying and amazing all at the same time. We looked at pictures online of what he would look like afterward, but nothing can prepare you for when it's your own child. It's shocking and heartbreaking. You don't understand it until you go through it."

Lincoln's strength and resilience inspired one person in particular - his older brother Alex. Alex wrote about his brother and took a picture for a school contest. He impressed the judges in the district-wide competition, and is now moving on to compete at the state level.

The title of Alex's Lincoln-inspired entry?

"My Hero."