During a routine ultrasound early in her pregnancy, Rebecca Jones and her husband Brent, of Hobe Sound, Florida were devastated to learn there was something wrong with their baby’s heart. Their obstetrician referred them to Dr. David Drossner, a pediatric cardiologist and director of outpatient cardiology at Nicklaus Children’s, who specializes in fetal cardiology. The program provides care to families who are expecting an infant with a heart anomaly. Dr. Drossner saw the Joneses that very same day at the Nicklaus Children’s Palm Beach Gardens location.
“Our fetal cardiology program is unique because we essentially begin the journey of treating our patients before they are even born,” said Dr. Drossner. “Our goal is to provide comfort and education to families on their baby’s diagnosis and walk them through steps that lie ahead.”
The expectant parents learned their baby, Gabrien, had a rare heart defect called transposition of the great arteries, a condition in which the two main arteries leaving the heart are reversed. This affects the way blood circulates, creating a shortage of oxygen in the blood. It can lead to blue coloring of the skin, shortness of breath and lack of appetite. Corrective heart surgery within the first few days after birth is the typical course of treatment for babies born with this defect. The diagnosis set into motion months of planning, meeting with specialists and preparing for Gabrien’s birth and surgery.
“As you can imagine, getting a diagnosis of a serious heart defect that would not only require open-heart surgery but also immediate intervention after birth, was terrifying. Finding the best possible care became the top priority for my husband and me,” said Rebecca.
Dr. Drossner put the Joneses in contact with a nurse navigator within Nicklaus Children’s Hospital’s Heart Institute who would become their main point of contact and arrange appointments with the team of doctors and specialists that would be involved in their son’s care.
“Because we live two and a half hours north of Miami and knew Gabrien’s heart condition could require immediate medical intervention, we were advised that we would need to relocate to Miami before his birth. We were amazed with the support network Nicklaus Children’s had in place for families like us. The nurse navigator not only arranged a tour of the hospital and a meeting with the surgeon who would correct our son’s heart, but also made appointments for us with an obstetrician and cardiologist in Miami, providing housing options, activities for our older son, and was available anytime we needed her to answer question and offer encouragement,” said Rebecca. “Between the nurse navigator and Dr. Drossner providing frequent updates to our team in Miami, we were able to focus on the health of our son instead of the many arrangements that needed to be made before his birth.”
“Our goal is to ensure the patient’s transition after birth is as seamless as possible. We do this by working closely with the obstetrician, the maternity hospital, the mother’s care team and our pediatric specialists to give patients like Gabrien the best possible start at life,” says Dr. Drossner.
Within hours after his birth, Gabrien was transferred to Nicklaus Children’s Hospital’s Cardiac Intensive Care Unit. That same day, he underwent his first procedure, a cardiac catheterization, to open blood flow to the heart. At only six days old, little Gabrien had open-heart surgery to repair his heart.
“The caring staff that we had met before Gabrien’s birth were also there when he was transferred to Nicklaus Children’s Hospital. One of my fondest memories of Gabrien’s time in the intensive care unit is the first time I held him. His nurse had been telling me that they were concerned about his heart rate because it was high. Once he was snuggled in my arms, the nurse began to laugh and said ‘this is why I love my job, that’s the lowest his heart rate has been all day,’” said Rebecca. “The staff at Nicklaus Children’s understands that parents are an important part of their child’s health and recovery and always encouraged us to be involved in Gabrien’s care, ask questions and provide input.”
Gabrien is now a thriving toddler with a very bright future. Rebecca hopes to share Gabrien’s story to help support other heart moms and to provide comfort in knowing there is hope for babies with complex heart conditions.
“I am forever grateful to all those at Nicklaus Children’s for the beautiful, healthy life my son now lives,” she said.
Photo by Amanda Counseller Photography