About CDH

CDH stands for Congenital Diaphragmatic Hernia. CDH occurs when the diaphragm does not form correctly during gestation, leaving a gap between the abdomen and chest. Through this gap, the organs from the abdomen can migrate into the chest, shifting the heart to one side and leaving less space for the lungs to develop and grow. Surprisingly, its occurrence rate is similar to that of spina bifida and cystic fibrosis, yet hardly anyone seems to know about it.

CDH is typically repaired within days to a few weeks after a baby is born, depending upon a number of factors. However, this is only the start of recovery for children with CDH as they then have to overcome respiratory issues related to having hypoplasia, or small lungs, and possibly pulmonary hypertension as well as feeding challenges. Babies with CDH often have NICU stays of a minimum of two to three months, but can be as lengthy as over a year too. Every case is unique.

Some babies with CDH will require ECMO, or a heart-lung bypass machine, within the first month of their lives. This life-saving machine gives these children some time to “rest” and build up strength to do the work of the heart and lungs themselves once hopefully coming off of ECMO.

The most important thing when being given this diagnosis is finding a facility that is well-versed in treating CDH. Nationally, the chances of survival are 1 in 2. At a place that knows what they’re doing, the odds go up to 80% or more, depending on the severity of the case. Again, each case is different, and there is no clear trajectory as to how to treat every case, which is why it’s so important to find a place that has a full arsenal of medical “tricks” to try no matter what comes up.

For more detailed information about CDH, please visit CHOP’s CDH page here.