Prenatal Diagnosis, Knowledge Help Couple Cope with Son’s Heart Condition
Samantha and Ryan Padgett’s baby was diagnosed prenatally with a congenital heart defect. Early diagnosis allowed them to plan for Grayson’s birth, giving him the best possible start in life.
By Karen Thurston Chavez
“That’s not what that’s supposed to look like.”
That’s not a comment you want to hear about your unborn child’s heart during your second-trimester ultrasound. But that’s what a maternal fetal medicine doctor told Samantha and Ryan Padgett about their baby when he looked at the child’s heart.
The Padgetts, who live in Tallahassee, were referred to Anthony Gregg, M.D., a professor of obstetrics and gynecology and director of the maternal-fetal medicine division at the UF College of Medicine, and to a pediatric cardiologist with the Fetal Cardiac Program at the UF Congenital Heart Center.
UF doctors confirmed Baby Grayson’s diagnosis – transposition of the great arteries, a congenital heart defect in which the two major vessels that carry blood away from the heart (the aorta and the pulmonary artery) are switched, or transposed. Grayson would need open-heart surgery soon after birth to correct the blood flow in his heart.
“We had been offered additional screenings and we took them to get more information about our baby,” Samantha said. That additional information gave the Padgett’s baby a strong start in life, even with his heart defect.
“Prenatal diagnosis allows parents-to-be and the baby’s doctors to plan for the baby’s birth, like delivering the baby at a special hospital like Shands Hospital for Children at UF,” said Jennifer Co-Vu, M.D., director of fetal cardiac program at the UF Congenital Heart Center. “We have high-risk obstetricians, a neonatal intensive care unit, and pediatric cardiology and heart surgery services.”
UF doctors advised the Padgetts to deliver their baby at Shands Hospital for Children at UF, and they recommended that Mark Bleiweis, M.D., operate to repair Grayson’s heart. Bleiweis is director and principal cardiothoracic surgeon for the UF Congenital Heart Center.
The Padgetts had never heard of him, but knew friends who probably had: a neonatologist in Tampa, and an anesthesiologist in Gainesville.
“I said, ‘Tell me about Mark Bleiweis,’ ” Samantha recalled. “They told us, ‘he’s just amazing; precise, demanding, he’s just all in.’ We met with Dr. Bleiweis a few weeks later, and we didn’t feel we needed a second opinion.”
It didn’t hurt that everything Grayson would need would be at the University of Florida, a place Samantha and Ryan know well. They’re both UF alumni, graduating from the College of Law. They met and later married on the UF campus. As season-ticket holders, they attend almost every home football game. When it was time to decorate the nursery, there was no question it would be Gator-themed.
“Everything good that has ever happened in our lives has happened at UF, including Grayson’s care,” Samantha said.
Before Grayson arrived, the Padgetts had the opportunity to tour the neonatal intensive care unit, where Grayson would stay until he had surgery, and the pediatric intensive care unit, where he would go after his surgery.
“We met with everyone who would be part of Grayson’s care,” Samantha said. “Dr. Gregg said, ‘If you come here, this is our baby, too.’ They were all very invested; they wanted the best for Grayson.”
Grayson was born Dec. 8, 2011, about eight days before his due date, weighing 8 pounds, 8 ounces.
“We didn’t know what it would be like when he was born,” Samantha said. “We didn’t know if he would cry. But he cried. I got to kiss him. He was OK.”
Immediately after Grayson was born, Curt Fudge, M.D., director of the pediatric interventional catheterization laboratory, performed an atrial septostomy, in which a small hole is created between the upper two chambers of the heart (the atria). This allowed more oxygenated blood to enter Grayson’s right heart where it could be pumped to the rest of his body.
For his first nine days, Grayson learned to feed and his lungs got stronger. Then, just two days after Christmas, Grayson had open-heart surgery.
“After about eight hours, Dr. Bleiweis came to talk with us. Grayson had done well,” Samantha said. It was another hour before Samantha and Ryan were able to see their son in his room in the pediatric intensive care unit.
“Our first nurse was very organized. Not a wire was out place; everything was right where it should be,” Samantha explained. “It somehow made you feel comfortable.”
Over the next nine days, Grayson recovered. With each day that passed, doctors and nurses removed tubes and wires and weaned medicines.
“The nurses taught us how to take care of him, bathe him, hold him, put him in his car seat,” Samantha said, adding that those everyday tasks can be tricky with “sternal precautions” — a list of do’s and don’ts to protect the breastbone after open-heart surgery.
A month after his birth, Grayson went home. “We came home with a baby who has a chance of leading a normal, healthy life,” Samantha said. “There may be bumps along the way, but there are people looking out for him.”
Those supports, along with open lines of communication, are what Samantha and Ryan rely on to take care of Grayson, even today.
“We never feel like we’re left hanging with no one to talk to,” Ryan said. “It helps us worry a little less.”
Ryan and Samantha said they email frequently with Grayson’s pediatric cardiologist, Jeremy Archer, M.D., a fellow at UFCHC. Once home, the new parents had questions for Dr. Bleiweis, so they called him; he returned their call.
“Grayson will never not need a cardiologist,” Samantha said. “We want the same people who took care of him to continue following him. We want his life to be as normal as possible, although it will always be a little different.”
Samantha thinks back to her second-trimester ultrasound.
“Even though ultimately all I heard that day was, ‘your child has a heart defect,” prenatal testing prepared us,” she said. “UF&Shands gave us hope. They gave us our son.”