Jackson Health System’s Pediatric Cardiac Team Saves Baby Suffering From Heart Defects
By: Krysten Brenlla
At 22 weeks pregnant, Alison Johnson, 32, received difficult news from the doctors at Holtz Children’s Hospital at University of Miami/Jackson Memorial Medical Center. Her unborn baby, a boy, was suffering from several congenital heart defects, which could be fatal within the first few days of life if left untreated.
Johnson, however, did not allow the diagnosis to dampen her joy as she awaited her family’s newest arrival.
“From the start, we placed all of our trust in Jackson’s amazing doctors and nurses,” she said. “I was determined to help my baby overcome the health setbacks that threatened his life.”
Johnson and her husband decided to treat their son’s congenital heart defects at UHealth Jackson Children’s Care Congenital Heart Center at Holtz Children’s with three different surgical heart procedures over the next two years.
“The baby was diagnosed with critical aortic stenosis, an abnormality of the aortic valve that occurs during the development of the heart while in the womb, which essentially makes his heart work harder to pump blood to the rest of his body,” said Melvin Almodóvar, MD, chief of pediatric cardiology at Holtz Children’s, co-director at UHealth Jackson Children’s Care Congenital Heart Center, and director of pediatric cardiac critical care and cardiology at Holtz Children’s. ”This was a problem up until birth; he also had a restrictive atrial septal defect that needed to be taken care of once he was born, or he could die.”
With the help of the teams at The Women’s Hospital at Jackson Memorial and UHealth Jackson Children’s Care Congenital Heart Center, Johnson delivered her 9-pound baby boy, Griffin, on February 3, 2022 via C-section.
“He let out a loud cry, and even though I couldn’t be with him at that moment, I knew he would be okay,” Johnson said.
Immediately after his delivery, Griffin was intubated and moved to the cardiac catheterization lab, where umbilical lines were placed to allow a constant flow of fluids and medications to his heart. He also underwent a balloon valvuloplasty, a procedure that helped open his narrowed aortic valve using a catheter, to help his blood pump from the heart throughout his body.
On February 15, 2022, Leonardo A. Mulinari, MD, PhD, chief of pediatric and congenital cardiac surgery and co-director of the Comprehensive Heart Center at Holtz Children’s, and interim chief of the heart transplant program at the Miami Transplant Institute, performed a bilateral pulmonary artery banding, a procedure to help limit too much blood flow to Griffin’s lungs.
The following day, Griffin returned to the cardiac catheterization lab where Satinder Sandhu, MD, medical director at UHealth Jackson Children’s Care Congenital Heart Center, and a pediatric and adult congenital heart disease cardiologist at Holtz Children’s, performed stenting of the patent ductus arteriosus (PDA), a procedure in which a stent is inserted into the PDA blood vessel, an extra blood vessel found in babies, to keep it open for the lungs.
“The hybrid approach where the surgical team and the cardiac catheterization team work as a single unit improves the outcomes in this complex congenital heart defect for the baby,” Dr. Sandhu said. “Like his mother, Griffin is strong.”
In May 2022, Griffin was healthy enough to go home for several months. He met his older brother for the first time, and enjoyed the holidays with his family while he grew stronger to withstand his second procedure.
In the New Year, on February 3, 2023, the Johnson family reached a major milestone – they celebrated Griffin’s first birthday, a day they weren’t sure they’d reach.
That same month, Griffin returned to the hospital to prepare for the second procedure in his treatment plan, one of the most complex cardiac surgeries.
“The second procedure that Griffin needed to save his heart function was the Norwood/Glenn,” Dr. Mulinari said. “Our heart has two ventricles, but Griffin has a single ventricle physiology, so to treat his unique heart, we removed the previous pulmonary artery bands and stents that were placed in the first procedure, and we created a connection between the heart and systemic circulation that allows the heart to pump blood throughout the body and lungs on its own.”
Despite several challenges, Griffin successfully underwent the procedure on February 28.
For now, the team’s hard work has paid off. Griffin went home on March 28 to spend more time with his family while he awaits his third operation, the Fontan procedure, which will be scheduled when he turns 3.
“Those four weeks we were in the hospital during Griffin’s second procedure were the hardest for me and my family; my husband and I were like ships passing through the night, at Griffin’s side,” Johnson said. “If there’s one thing we’ve learned about Griffin is that if we push him, he pushes back – he’s the biggest fighter I know.”
For the future, Johnson and her husband are hopeful that Griffin will flourish, and live a normal and healthy life without the need of a transplant. They’re looking forward to spending as much family time together at home.
“When I was pregnant, my doctors told me that Griffin had a 20 percent chance of living,” Johnson said. “Thank you is not enough to say to the teams at Holtz Children’s and at Jackson.”
“I want to give them the stars and the moon. We feel like we have become part of a second family; without them, Griffin would not be with us today.”