Congenital Diaphragmatic Hernia - Personal Story of this Birth Defect

When my daughter and son-in-law went for their nineteen-week routine prenatal ultrasound, they were excited to find out the sex of their baby. They were told the baby is a girl, and also that she has a birth defect called Congenital Diaphragmatic Hernia, or CDH. Since that time we have read and researched every possible source we could find for CDH. We have talked to obstetricians, pediatricians, pediatric surgeons, and other CDH mothers. What we have learned is that much of the information available on the internet is outdated or inaccurate. I can tell you what we have learned.

Congenital Diaphragmatic Hernia occurs in 1 out of every 2500 births. It occurs in every race, religious background, and economic level. It also does not correspond to the prenatal care the mother receives. No one knows what causes it, although there are major research studies being done to try to find the cause. In approximately the tenth week of fetal development, the diaphragm forms. The diaphragm is a muscle that separates the heart and lungs in the chest cavity from the organs in the abdominal cavity. With CDH babies, there is a hole in the diaphragm, and this opening allows some of the organs such as the stomach, liver, or intestines to move up into the chest cavity and take up space where the lungs should be developing. Most hernias are left-sided, but a small percentage is right-sided. They can vary from a mild defect to severe, but most doctors agree that there are no real statistics as to how well any certain baby will do until the baby is born and determination is made about how well that baby's lungs function.