ST. PETERSBURG, Fla. (WFLA) – Families from across the country returned to Johns Hopkins All Children’s Hospital today; the same hospital where their babies were treated for a rare birth defect.
These children were diagnosed with Congenital Diaphragmatic Hernia, or CDH. The defect causes a hole where abdominal organs can move into the child’s chest.
“That causes their lungs to be very small when they’re born. So they require intensive care, sometimes heart-lung bypass and many, many weeks of intense hospitalization,” said Joy Perkins, coordinator of the CDH program at the hospital.
She says the treatment for CDH is a surgical repair of the diaphragm within the first week of the baby’s life.
The care at Johns Hopkins All Children’s Hospital led many families we spoke with at Friday’s event right to St. Petersburg. The hospital has a special CDH unit with its own physicians, nurses, nutritionists and pharmacists.
All families mentioned Dr. William Kays, the head of the CDH program, who was in surgery during our visit.
Christa Porter was diagnosed at her 12-week ultrasound. She flew from San Diego to stay in St. Petersburg at 26 weeks pregnant, up until her son Micah was released from the NICU after 71 days.
“Being diagnosed that early is quite rare. And at the time it was really difficult news to process, but it was actually a blessing in disguise because it gave us more time to research top specialists throughout the country,” Porter said.
“We kept finding Dr. Kays’ name over and over again…We just knew that their treatment style was far exceeded any program we researched and so we just knew it was the right program for us, given Micah’s severity.”
Heather and Jason Coons actually relocated to Florida before their son Zachary was born, so he could be treated by Dr. Kays.
“At first when we were diagnosed we never heard of it. So, coming here, they were able to inform us and everything of what to expect. They did a great job before we came here to kind of let us set our expectations of how long the hospital stay would be,” Heather said.
Dr. Stacy Stone works in the CDH unit. She was a neonatologist at the hospital for 17 years before leaving the NICU to specifically take care of CDH patients.
“The reason why and what’s so rewarding, these patients, most of these people are given a 50 percent [chance of] survival or less in any other hospital in the United States. And they have [sought] us out, mainly Dr. Kays and our team care,” she said.
“And here we have over 95 percent survival. It’s nice to see that and I live it every day taking care of them, but to see them here, beautiful, wonderful kids running around.”