Two-year-old Gracey White has never seen the TV show, “Popeye the Sailor,” but her mother, Tina White, says she’s mastered the cartoon character’s mischievous, winking grin. The youngest of seven children, Gracey also has the super-strength of the fictitious figure.
“She was a miracle baby from the start,” Tina said. “I’d had several miscarriages before Gracey, including one that was nearly life-threatening, so I decided to have my tubes tied. But I still got pregnant with Gracey.”
‘Something didn’t look right’
Because of her history of miscarriages and her age, Tina was referred to specialists with Regional Obstetric Consultants (ROC), who work with Baptist Health and Wolfson Children’s Hospital for high-risk pregnancies. During one of her early ultrasounds, Tina knew something was wrong.
“I’d gone through this six times before, so when I looked at the ultrasound, I knew something didn’t look right with the image of her heart,” Tina said. “I was terrified that I was going to lose her. I didn’t know if I’d ever be able to recover from that.”
Tina was immediately referred to Thomas Moon, MD, pediatric cardiologist and cardiac imaging specialist with the C. Herman and Mary Virginia Terry Heart Institute at Wolfson Children’s Hospital. Dr. Moon diagnosed Gracey with tetralogy of Fallot, a congenital (present at birth) heart defect comprised of four abnormalities of the heart and its blood vessels.
“When we are able to identify congenital heart defects before a baby is born, it not only allows us to develop a care plan as pediatric cardiac specialists, but it gives the family time to prepare for what’s to come,” said Dr. Moon. “In this case, we knew Gracey would require heart surgery at a very young age.”
“Dr. Moon always kept us informed on the possibilities and the ‘what ifs,’” Tina said. “He made the experience as smooth as possible.”
Tina also had another person to guide her along this journey: her second-oldest child, Christene, whose own daughter was born with a heart defect.
In the family
Eight years before Gracey was born, Christene Marrero was getting ready to give birth to her first child, a baby girl named Sophia. When Christene delivered Sophia at Baptist Medical Center Beaches, everything initially appeared normal.
“Then a couple hours later, I tried to nurse her and she started turning blue,” Christene recalled. Sophia was immediately transported from Baptist Beaches to the high-level Neonatal Intensive Care Unit (NICU) at Wolfson Children’s Hospital, where pediatric cardiologists determined she had a congenital anomaly of the pulmonary arteries.
“Sophia’s heart defect is extremely rare,” said Jose Ettedgui, MD, pediatric interventional cardiologist and medical director of the Wolfson Children’s Terry Heart Institute. “Normally, a person’s heart is connected to the lungs by two pulmonary arteries, one for each lung. In Sophia’s case, her heart only connected to one lung through a single pulmonary artery, while the other lung was connected directly to the aorta, the large vessel that delivers blood to the rest of the body.”
At just 1 week old, Sophia underwent her first open-heart surgery at Wolfson Children’s Hospital. By the time Sophia was 15 months, she’d had three open-heart surgeries to reconnect the pulmonary arteries to her heart. She will need another procedure, hopefully her last, around the time she reaches puberty.
From heart to spine
Six years after Sophia was born, Christene was overjoyed to learn she and her husband, Miguel, were expecting their second child. Because of the complications with Sophia’s heart, Christene’s second pregnancy was considered high-risk, which led to more frequent and more detailed ultrasounds. At around 19 weeks, Christene learned her baby boy, Sebastian, had myelomeningocele, a serious form of spina bifida. Spina bifida is a birth defect in which the spinal cord doesn’t develop properly.
“In a myelomeningocele, the normal covering of the spinal cord has not formed properly and the end of the spinal cord is exposed on the surface of the patient’s back,” said Nathan Ranalli, MD, pediatric neurosurgeon with the Walter and Michelle Stys Neuroscience Institute at Wolfson Children’s Hospital and the UF College of Medicine – Jacksonville. “This often includes a thin sac of fluid overlying the nerves, which may be ruptured when the baby is born, as was the case for Sebastian.”
“I remember thinking, ‘How is this happening again?’” Christene recalled. “I thought a problem with the heart was as bad as it could get; then I find out something is wrong with my baby’s spine.”
During her pregnancy, Christene consulted with Dr. Ranalli’s colleague, fellow Wolfson Children’s and UF College of Medicine – Jacksonville pediatric neurosurgeon Alexandra Beier, DO. This advance planning ensured Dr. Ranalli, who was the pediatric neurosurgeon on-call when Sebastian was born at Baptist Medical Center Jacksonville, had a full understanding of what to expect.
Dr. Ranalli performed surgery within 24 hours of Sebastian’s birth to protect the exposed spinal cord and nerve tissue, reduce the ongoing loss of cerebrospinal fluid, and decrease the risk of infection. Three days later, Sebastian developed hydrocephalus, the result of increased pressure on the brain due to a buildup of cerebrospinal fluid. Dr. Ranalli operated again to insert a shunt, which diverts the fluid away from the brain.
Sebastian’s surgeries were successful, with Christene sharing that the now-4-year-old is able to walk without assistance from a walker. He continues to be seen at the Wolfson Children’s Rehabilitation Spinal Defects Clinic.
By the time Christene was pregnant with her third child, a boy named Shiloh, her mom was also pregnant with Gracey.
“Having been through the diagnoses and surgeries with my own children, it was hard realizing that now my mother would have to go through it, too, with my sister, Gracey,” Christene remembered.
Someone to lean on
Christene was one of the first people Tina told of Gracey’s congenital heart diagnosis.
“It was definitely helpful to have the support of someone who had been through this,” Tina said.
“I was able to prepare her for what was to come, from surgery to the appointments,” Christene recalled.
When Gracey was born on Dec. 19, 2018, at Baptist Medical Center Jacksonville, she was immediately taken to the Wolfson Children’s NICU for evaluation. Thankfully, her heart was functioning well enough that she didn’t need immediate intervention nor a long NICU stay. In fact, after the initial evaluation, she was able to stay in the room with Tina during recovery, and Tina was able to bring Gracey home when she was discharged.
Dr. Moon continued to closely monitor Gracey and determined she needed to undergo surgery at 6 months old. Harma Turbendian, MD, pediatric cardiothoracic surgeon with Wolfson Children’s Hospital and faculty member with the UPMC Children’s Hospital of Pittsburgh, performed Gracey’s first surgery, along with a second one a year later. Wolfson Children’s Hospital is a member of the UPMC Children’s Hospital of Pittsburgh’s Heart Institute Network, providing top-ranked, specialized pediatric cardiac care for children in North Florida, South Georgia and beyond.
“So many babies with congenital heart defects are living today who wouldn’t have been able to in the past, thanks to advances in the field and the amazing care provided by the pediatric cardiologists and heart surgeons at Wolfson Children’s,” said Tina.
Sophia, Sebastian and Gracey are all thriving; one family bonded by the unimaginable, now with hope for a healthy future.
“We are so thankful for everyone who has provided care for our whole family,” Christene said.
The pediatric specialists at Wolfson Children’s Hospital provide expert care for the most complex medical conditions. To learn more about cardiology and heart surgery services the Wolfson Children’s Terry Heart Institute provides for congenital heart defects, visit wolfsonchildrens.com/littlehearts. For more information about pediatric neurosurgery, visit wolfsonchildrens.com/neuro.