A lifeline for the smallest patients

In the fall of 2023, Songo Wawa was five months pregnant going into a routine anatomy scan at Sibley Memorial Hospital, a member of Johns Hopkins Medicine in Washington, D.C. This appointment would provide the family with photos of their son, Asante. But something was off. "A two-hour appointment turned into a five-hour appointment," explained Wawa. Doctors noticed her baby was "missing" a diaphragm.

"For me, he felt strong. He felt fine, I felt fine," she says, recalling the day. "You have someone telling you something's wrong, and your initial reaction is just to not believe them."

Asante was diagnosed with a congenital diaphragmatic hernia (CDH), which occurs when a hole does not close during development of a baby's diaphragm, causing organs in the abdomen—such as the intestines, stomach, and liver—to push through the hole, crowding the lungs and preventing them from developing completely. The condition can have serious complications, and it can be deadly.

"About 20% of children don't make it," said Shaun Michael Kunisaki, a professor of surgery in the Johns Hopkins University School of Medicine in Baltimore and the director of the fetal program at the Johns Hopkins Children's Center. Kunisaki also runs the CDH clinic at Johns Hopkins Children's Center and has been researching CDH for years.

His laboratory, which is funded by the National Institutes of Health, "is working on different procedures, as well as different drugs, that we can give in utero to try and speed up lung growth so that when the child is born, they'll be able to breathe much easier," explains Kunisaki.

Unfortunately, Asante's case of CDH was severe; there was only about 23% of what was expected of the total lung at birth. Because of this Ahmet Alexander Baschat, director of the Johns Hopkins Center for Fetal Therapy, performed a surgery on Asante while he was still in the womb. In this procedure, a balloon was placed in Asante's windpipe to allow his lungs to expand.

"Just enough so that, when he's born, he might have enough lung to survive," Kunisaki says.

The balloon was removed a few weeks later.

Wawa went into labor at 34 weeks and Asante was born Jan. 5, 2024. He was taken to the neonatal intensive care unit at Johns Hopkins Children's Center for specialized care. When he was 5 days old, Asante had a second procedure in which Kunisaki and pediatric surgeon Alejandro Vera Garcia performed surgery to fix Asante's congenital diaphragmatic hernia.

Though Asante required the assistance of additional oxygen and a feeding tube following the surgery, his diaphragm was completely repaired.

"Without the necessary research funding, I think our progress in congenital diaphragmatic hernia will stall," Kunisaki says. "These babies have the potential to be fully functional adults. You're not just saving a life, but you're saving a lifetime."

It's a sentiment that resonates with Wawa. "That's why we're able to talk about this today," she says.

Asante, now a 1-year-old who loves Sesame Street and jumping on trampolines, no longer routinely needs oxygen support and can eat by mouth. He follows up regularly with Kunisaki and a team of doctors at Johns Hopkins Medicine, including a pulmonologist and cardiologist.

"It's just what they did for our family, what they continue to do. … We're grateful," Wawa says.