At a 10-week panorama prenatal test, Lukas’ mom, Aimee from Lakewood Ranch, learned there was a 90% chance her baby had Down syndrome. Her physician began monitoring Lukas prenatally for any signs of a heart defect, which is common in children with Down syndrome. It wasn’t until Aimee was 30 weeks pregnant that they discovered Lukas had perimembranous ventricular septal defect (VSD), a congenital heart defect in the lower wall of the heart.
“I was shocked,” Aimee says. “They had checked his heart at every ultrasound but didn’t see anything earlier. We hoped there was a small chance Lukas didn’t have a defect. But the hole was huge. It took up 25% of his heart.”
Aimee’s physician immediately contacted Michelle Miller, M.D., a pediatric cardiologist at Johns Hopkins All Children’s Outpatient Care location in Sarasota, for a fetal echocardiogram that confirmed the diagnosis.
“Fortunately, we knew we could correct this type of heart defect,” Miller says. “Lukas would be able to have a complete repair of the heart, instead of just ongoing management of symptoms.”
Aimee immediately felt in good hands with Miller and continued with her original prenatal plan but decided to deliver Lukas at Johns Hopkins All Children’s Hospital instead of her hometown hospital. After delivery, Lukas spent 69 days in the neonatal intensive care unit (NICU). He later would come back for pediatric heart surgery.
Perseverance Through Treatment
At only 4 months old, Lukas had an operation to fix the defect in his heart. Aimee brought him to the hospital early in the morning, giving him kisses and saying goodbyes before he was wheeled to the operating room.
“I was so nervous for him,” Aimee says. “I didn’t sleep at all the night before, but the nurses kept me calm in the waiting area, coming in every two hours with updates on his progress.”
James Quintessenza, M.D., co-director for the Johns Hopkins All Children’s Heart Institute and chief of pediatric cardiac surgery, was Lukas’ cardiothoracic surgeon for the procedure. Quintessenza practiced with Johns Hopkins All Children’s for 26 years before being recruited away by Cincinnati Children’s Hospital Medical Center to become the chief of pediatric cardiothoracic surgery at its affiliated Kentucky Children’s Hospital in 2016. In February 2020, he rejoined the Heart Institute.
“Without intervention, Lukas’ heart defect would not have closed on its own,” Quintessenza says. “We closed it so he would be able to breathe easier and develop normally. Lukas’ operation went well. He had an uncomplicated postoperative course and was discharged home after a few days.”
While Lukas had a few hard days after discharge, Aimee was comforted by the kindness of Lukas’ health care team in the NICU and the cardiovascular intensive care unit (CVICU).
“Not only did Dr. Quintessenza do an excellent job repairing his heart,” Aimee says. “But the entire staff was there to support us throughout the whole process.”
Joint Effort Toward Healing
Quintessenza attributes the success of Lukas’ surgery to the hard work of each staff member at the Heart Institute.
“It’s a complicated process to close a hole in the heart, but what makes all this work is an integrative team where each member does their part,” Quintessenza says. “We do our very best for every child, every time.”
Heart surgery for a child is difficult under normal circumstances, but Aimee had a new set of challenges ahead. Not only did Aimee and her husband, Adam, have to oversee Lukas’ care in their home, but they also had many therapy sessions and physician check-ups ahead — all during the coronavirus outbreak.
Miller praised Aimee’s positivity during a challenging time.
“Lukas’ family had to share in his burden — not only as parents but as medical caregivers,” Miller says. “Add on all the safety measures due to the pandemic, and you can see this was not an easy time for his family. Still, Aimee handled the challenges with grace and determination.”
A Remarkable Outcome
Before surgery, Lukas was constantly dry heaving and would tire quickly. His heart was pumping much harder than it should have been to provide his body with the oxygenated blood it needed. Now, Lukas has been able to wean off medications. He is able to eat better, sleep easier and show more energy through the day.
“Lukas is like a brand-new baby. He wakes up at 6 a.m. ready to eat, and he is always smiling and laughing,” Aimee says. “The staff at All Children’s is just amazing. I cannot say enough good things about the heart program and would highly recommend it to anyone looking for peace of mind and the best doctors for their child.”
To support the Heart Institute, contact Chris Decent, senior director of development, at firstname.lastname@example.org or 727-767-3867. This story first appeared in For the Kids, a magazine published by Johns Hopkins All Children’s Foundation.