Minus the murmur

Tallahassee newborn with rare congenital condition will need ‘lifetime surveillance’ after complex surgery to repair his tiny heart.

Ashlee Hobbs has delivered four babies in the past 12 years, but her most recent bundle of joy, Lynn Williams, Jr., weighed in at a bell-ringing 8 pounds, 6 ounces on Feb. 2, 2017.

“My other boys were all in the 6-pound range, so he was my biggest,” said the 27-year-old, stay-at-home mom who delivered all four of her boys at Tallahassee Memorial HealthCare (TMH).

But something about her latest pregnancy didn’t seem quite right.

Around the eighth month, Hobbs developed preeclampsia, a condition marked by high blood pressure and swelling in the feet, legs and hands. She eventually underwent an emergency C-section, but a day after birth, Lynn Jr.’s pediatrician picked up a murmur in her newborn child’s heart. Justin Vining, MD, a pediatric cardiologist with Wolfson Children’s Specialty Center at Tallahassee Memorial HealthCare, was alerted to the finding and immediately ordered a sonogram of the baby’s heart, which revealed a rare heart condition known as Tetralogy of Fallot. This congenital heart defect occurs in about one in 2,500 births and requires open-heart surgery.

“Right then, I began a lifelong relationship with this baby,” said Dr. Vining, who is in practice at the Wolfson Children's at TMH with Louis St. Petery, MD, Tallahassee Primary Care Associates.

Dr. Vining added that one of the components of Tetralogy of Fallot is a ventricular septal defect, or a hole in the septum between the two lower pumping chambers of his heart. “Fortunately for Lynn, it was a small one, but his heart condition will need lifetime surveillance.”

A day after he was born, Lynn Jr. was admitted to Tallahassee Memorial’s Level III Neonatal Intensive Care Unit (NICU). “I had never been in an ICU for babies before. It was all very overwhelming,” said Hobbs. “But Dr. Vining let us know everything that was going on. He even drew pictures of our son’s heart to show us what was happening.”

Two days after his birth, Lynn Jr. was transferred from TMH to the Level III NICU at Wolfson Children’s Hospital to further receive specialized heart care. This transfer utilized a specially designed ambulance known as the Kids Kare Mobile ICU, which is equipped to ensure Lynn Jr’s safe arrival to Jacksonville. After additional tests were performed on his heart in Jacksonville, Lynn Jr. met his brothers, Jaidyn, 12, DeMaris, 9, and DeAwndrai, 5, for the first time.

“Dr. Vining said that as long as he wasn’t turning blue, he would be fine,” added Hobbs, who returned to Jacksonville in mid-April for Lynn’s diagnostic cardiac catheterization, a minimally invasive procedure that lets the physician look inside the heart. Performed by pediatric cardiologist Robert English, MD, of UF Health Pediatric Cardiovascular Center, the procedure was followed by open-heart surgery in the cardiovascular OR at Wolfson Children’s, performed by pediatric cardiothoracic surgeon Michael Shillingford, MD, and his team.

Tetralogy of Fallot is one of the more common heart conditions cardiologists manage at Wolfson Children’s, according to Dr. English. “We see it pretty often. My job is to give the surgeon a good road map to follow when he goes in to fix the defect. The surgery typically takes one or two hours in the morning and the patient is off the bypass machine by noon,” he said.

In non-emergency situations, Jacksonville-area patients with a similar diagnosis may have surgery a week after their heart catheterization procedure, while out-of-town patients like Lynn Jr. usually have their surgery much sooner. “We try to minimize their road time,” added Dr. English. “We have five Wolfson Children’s Specialty Centers where we provide outpatient pediatric cardiology services, including at the one in Tallahassee, but that’s still a long way for some of these families.”

Hobbs and her husband, Lynn Williams Sr., said they received updates from the surgical and Cardiovascular ICU teams at Wolfson Children’s during their son’s complex heart surgery, which included “a moderate amount” of stitching to close the hole in his heart, according to Dr. Shillingford. “It seemed like forever when he was on the ventilator,” said Hobbs, “but when Dr. Shillingford told me that he came out of it OK, I cried tears of joy.” Lynn Sr. was so pleased with the outcome that he wrote Dr. Shillingford a personal note, thanking him for being “a man of his word.”

Added Dr. Shillingford: “I was very pleased with the result and for the opportunity to positively impact the life of Lynn and his family.”

Before the surgery, Hobbs said her youngest son used to wake up every morning with a frown on his face. “Now, he wakes up a happy baby,” she said. “It was all worth it just to see that smile. I give all his doctors my praises. They worked wonders with my son. They sure did.”

To learn more about congenital heart disease, visit Wolfson Children's Specialty Center at Tallahassee Memorial Healthcare.