What exactly is CDH? In the developing fetus, the diaphragm – the muscle that separates the chest and abdominal cavities – fails to close, allowing the abdominal organs to migrate into the chest, compressing the heart and lungs. While surgery can correct the diaphragm shortly after birth, the underdeveloped lungs cannot deliver enough oxygen and a CDH newborn requires immediate high-tech respiratory support. Infants born with CDH spend an average of three months in intensive care units, but some spend many more months.
Twenty years ago in the U.S., only about one in five babies with CDH lived. Now more than half pull through, but many go home on oxygen, a feeding tube and several medications. As a mother of a CDH survivor, I know how crucial having the proper medical support at home is to providing quality care. Many parents have difficulty paying for additional medical equipment, medicine and immunizations that are not fully covered by insurance or not covered at all.
There is no known cause of CDH nor any ways to prevent it. Hardly anyone knows what CDH is unless your loved one has been affected by it. With more awareness, research and continual support of parents with CDH children, together we can change this!
Each year in May Jaxson’s Jog will be held in North Park in Allison Park, PA. The proceeds from this event benefit Global CDH, an organization dedicated to supporting parents with medical and travel expenses related to CDH.
