LaToya was 20 weeks pregnant when she received frightening news. An anatomy scan revealed her baby had a serious condition called congenital diaphragmatic hernia (CDH), which occurs when a hole forms in the diaphragm or the diaphragm is missing completely.
“It was a whirlwind when I found out the news,” LaToya says. “I was not sure if I should decorate the playroom or prepare for something else.”
The diaphragm—a thin layer of tissue and muscle—separates the abdominal cavity from the chest. Its absence can result in a variety of structural and functional complications. Crowding in the abdominal cavity can compress and restrict the developing lungs, a condition called pulmonary hypoplasia that can potentially cause life-threatening breathing difficulties.
LaToya and her husband, Legend, were led to Johns Hopkins All Children’s Hospital through recommendations from friends and the Tiny Hero foundation, a Utah-based non-profit dedicated to helping families affected by CDH.
“All roads and statistics led us to the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s,” LaToya says. “They had the highest success rate in the country. It was invaluable to have somewhere to go for the answers and care we needed.”
The first inpatient program in the United States dedicated exclusively to treating CDH, the center at Johns Hopkins All Children’s offered the high-level specialists, technology and support LaToya and Legend needed for Legend Jr. They quickly connected with David Kays, M.D., medical director of the Center for CDH.
“Dr. Kays said that Legend Jr. had a severe case of right-sided CDH with less than 10 percent of his diaphragm, but my baby had something to prove,” LaToya says. “When I was eight months pregnant, we relocated to St. Petersburg so I would be close to Johns Hopkins All Children’s when Legend Jr. arrived.”
The family started what would turn into four months of living at one of three Ronald McDonald Houses on the Johns Hopkins All Children’s campus. Legend Jr. was 37 weeks and four days gestation at birth on Aug. 26, 2019, with 80 percent of his liver and a portion of his colon and spleen pushed into his chest. The Johns Hopkins All Children’s team quickly whisked him away for specialized care in the neonatal intensive care unit and surgical care to repair the hernia. Legend Jr. spent 26 days on extracorporeal membrane oxygenation (ECMO) equipment, which oxygenates blood outside of the body to deliver respiratory support to fragile newborns.
“We did not get to hold Legend Jr. until he came off of ECMO,” LaToya says. “It was intense, and we had so much to learn. But the staff at Johns Hopkins All Children’s was with us every step of the way, from providing medical guidance to encouraging us to have a date night. They paid attention to all of the little things—and that matters.”
Today, Legend Jr. is feeling strong. He loves to play at the park, where he enjoys sharing his snacks with the ducks. He returns to Johns Hopkins All Children’s for periodic check-ins with his medical team.
“You never know how life is going to hit you, but God is real and will make sure that someone has your back,” LaToya says. “That is what Johns Hopkins All Children’s did for us, and we are so thankful.”
How Giving Helps
Legend Jr.’s success would not be possible without the support provided by the Johns Hopkins All Children’s Foundation and donors like Judy Keyak. A lifelong teacher and member of the Johns Hopkins All Children’s Foundation Guild, Keyak has volunteered at and donated to the hospital for many years. She recently made a major gift to support the CDH program and formalized a plan to leave a portion of her will to the Center for CDH.
"There is no question that Judy’s impact can be felt at the hospital," says Lydia Bailey, CFRE,
director of planned giving, Johns Hopkins All Children’s Foundation. "And, thanks to her estate gift, her impact will be felt long into the future. With that gift, Judy joins the Dream Builders legacy society — a special group of friends who have included Johns Hopkins All Children's Foundation in their estate plans."
Because Keyak spent many years volunteering for the Ronald McDonald House adjacent to the hospital, she is well-acquainted with the stress CDH puts on families. She also understands the need for advanced technology to provide timely and effective solutions.
“Lots of the families of babies with CDH who stayed at the Ronald McDonald House would share stories about how doctors at other facilities told them to terminate their pregnancies because their children would have no quality of life if they survived,” she says. “That touched my heart, and I wanted to make sure little infants with the same condition could have a chance at life. I talked to Dr. Kays about what was needed to help, and that was that.”
Before her latest gift to the CDH program, Keyak donated to support the purchase of a Tecotherm unit, a portable device that cools and warms infants for therapeutic hypothermia.
“I have gone back to see the results and how these technologies have saved children’s lives,” she says. “It just makes me want to do more.”
To learn more about including Johns Hopkins All Children’s in your will, contact Lydia Bailey, director of planned giving, at Lydia.Bailey@jhmi.edu or 727-767-8914.