It's more common than spina bifida, muscular dystrophy and cystic fibrosis.
Congenital Diaphragmatic Hernia, or CDH, remains a mysterious disease with no known cure. One in every 2,000 babies in the U. S. is born with CDH. But it can easily be misdiagnosed.
A renowned St. Louis surgeon visited Quincy Wednesday to educate our doctors on the signs and treatment of CDH.
"I think the lessons we hope to convey today are, it is prevalent, it is common. It is a good reason to do prenatal ultrasound testing. And when things like this are identified, it's very good to coordinate a plan as to where the child is going to be delivered, and to be able to meet with the family ahead of time. Give them instructions on what to expect, and what are the potential consequences with this diagnosis," Dr. Brad Warner said.
Warner is a general pediatric surgeon at St. Louis Children's Hospital. He's one of a special group of doctors who diagnose and treat CDH babies. Before birth, babies can develop a hole in their diaphragm which allows organs to dangerously bunch up into their chest. In many cases, this is what causes the death in CDH babies. A handful of Tri-State families are no stranger to CDH...including Tiffany and Rome Frericks who lost their baby boy, Cadan, in November of 2008. But today, they're a support group for other families like the Rhodes family, who is anxiously awaiting Baby Isaac's return home after a 5-month hospital stay. Dr. Warner is one of 15 doctors monitoring Baby Isaac's every move.
"I think that intensity and input from so many doctors at once is very important, because it's really amazing when something that comes out of left field as a suggestion, may be something we didn't think about, but is really the lifesaver," Warner said.
Children's Hospital is also working with a network of doctors out of Columbia, New York, looking at the genetics of CDH babies to see if they can come up with a reason for this disease.
"I think there's a lot of exciting things coming down the pike, but it's still right now, one of those conditions that across the board is a 50/50 survival rate. We need to do better," Warner said.
This year, KHQA is a sponsor for the area's largest CDH fundraiser, Cadan's Carnival which takes place in October.