What is CDH?
Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form around week 9-10 of gestation. This can allow some of the abdominal organs to move into the chest, preventing normal lung growth and possibly also causing damage to the heart. This defect happens in about 1 in 2,000 births. Unfortunately, CDH is a rather unknown birth defect that most people don’t hear about unless their baby is diagnosed with it. CDH happens at about the same rate as cystic fibrosis and spina bifida.
Many hospitals aren’t equipped to treat CDH babies. They either don’t have surgeons who can perform the hernia repair surgery or they don’t have an Extracorporeal Membrane Oxygenation machine (ECMO) which is a heart lung bypass machine that is sometimes used in treatment of these critically ill babies.
The survival rate for CDH babies is around 50%. At Legacy and other hospitals that use the gentle ventilation technique for treatment there is a 92% survival rate for babies that don’t need ECMO. Some babies with CDH also have other birth defects, affecting the heart, chest wall (pectus excavatum) or spine (scoliosis). There are also some chromosomal abnormalities that can occur with CDH. Some babies, however have only the CDH and no other structural or chromosomal abnormalities.
So many little ones that are born with CDH have lasting problems. Often the lungs don’t grow to normal size or function so babies may still need the help of oxygen or other lung medications. Other common problems are with feeding, from acid reflux to oral aversion and problems with weight gain. Some babies also experience different developmental delays from extended hospital stays or ECMO and the side effects of different medications.
