What is CDH?

Congenital Diaphragmatic Hernia (CDH) is a congenital (present at birth) malformation of the diaphragm, the muscle responsible for breathing. The severity of this defect can range from a small hole to the complete absence of the diaphragm. When the diaphragm does not develop completely, the internal organs of the abdomen (stomach, liver, intestines) are able to move up and develop in the chest cavity. Abdominal organs in the chest cavity during gestation inhibit the growth and development of the baby’s lungs. While statistics vary, CDH occurs in about 1 in 2,000-5,000 babies. Only 50% of babies born with CDH will survive.

Babies born with CDH need varying support in order to breath, most will spend time on a ventilator beginning immediately after birth. Some babies will require ECMO (Extracorporeal membrane oxygenation), a form of heart-lung bypass used to circulate blood outside of the body. Babies with CDH undergo repair surgery (to close or patch the hole in the diaphragm) in the first few days or weeks of life. The road to recovery is different for each child – spending days, weeks or months in the hospital after surgery. Some children require extensive and/or repeated hospital stays and varying medical support at home.

Complications (long- and short-term) of CDH include difficulty/increased work breathing, pulmonary hypertension, gastroesophageal reflux disease (GERD), feeding problems and oral aversions, scoliosis, bowel obstruction and asthma.

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