Midtown Raleigh News

Wake Forest birth defect nonprofit makes waves in D.C.

This Thursday, children with angel wings will march three miles around Washington, D.C., past the Lincoln Memorial, past the Washington Monument and up the steps to the U.S. Capitol building.

It’s the first-ever Parade of Cherubs in Washington, D.C., designed to raise awareness of an often fatal birth defect and drum up support for research funds. At the end of their trek, the “angels” and their families will meet with Alabama Sen. Jeff Sessions, who is working on legislation to support research.

“When the time comes to vote, we want them to remember kids in wings who were sick little babies and vote in our favor,” event organizer Dawn Williamson said.

CHERUBS, the little Wake Forest charity that could, is the nonprofit behind the event. CHERUBS’s mission is to support families of children born with congenital diaphragmatic hernia, a hole in the diaphragm muscle that allows internal organs to crowd the heart and inhibit lung development. It affects about 1,600 babies in the United States each year.

Williamson founded the organization in 1995, after her son Shane was born with CDH. She ran CHERUBS for many years from an upstairs bedroom of her house in Wake Forest, but now works from a two-room office downtown that has already gotten too small.

Now, CDH survivors and their families organized through CHERUBS are marching on Washington, D.C., and in six other parades around the country. Williamson is helping pen a bill to assign more money for research.

Williamson’s mission is personal. Her son died from CDH complications in 1999. He was 6 years old.

Raising the survival rate

More research is crucial, said Henry Rice, chairman of pediatric surgery at Duke University Medical Center. Sessions and Williamson cite a 50 percent survival rate among babies born with CDH. The survival rate in Duke’s program is about 80 percent, Rice said, but it’s been stuck around that level for the past 10 years.

“That’s a concern: how to push that plateau of survival,” Rice said. “You don’t want that rate to plateau, you want it to keep getting better.”

Children who do survive require lengthy hospital stays that quickly rack up medical bills into the millions. When Williamson’s son Shane was hospitalized, the bills were more than $4 million, she said. Williamson was forced to go on Medicaid to help pay for his expenses, a course many families must take, she said. Research that leads to less hospital time would save money for the government as well as for families, she said.

More than 250 people are expected to participate in the parade in Washington, Williamson said, flying in from as far as California and Texas. Massachusetts General Hospital’s CDH Genetic Study Lab will take blood samples from relatives of CDH babies for genetic research.

Williamson will represent North Carolina families, but those families and their supporters can participate in a “virtual parade” online by posting photos and video, she said.

Sessions, a Republican, will address participants at the event. He became aware of CDH after his grandson, Jim Beau, was diagnosed in 2009.

“We know improved results are possible, and soon,” Sessions said.