Congenital Diaphragmatic Hernia or CDH
Congenital = born withDiaphragmatic = involving the diaphragm
Hernia = condition where organs/muscles protrude through a hole they aren't supposed to
CDH occurs in approximately 1 in 2,500 live births (http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164). It is as common as Cystic Fibrosis and Spina Bifida. Yet, until they have a child diagnosed with it, most people have never heard of CDH.
HALF OF ALL BABIES DIAGNOSED WITH CDH WILL NOT SURVIVE.
The diaphragm is a muscle that facilitates breathing and separates the abdominal muscles below it, from the lungs and heart above it. When the diaphragm does not fully close/develop, around 3 months in utero, the intestines, stomach, liver, and/or spleen develop into the chest cavity. This presents a life-threatening situation because the abdominal organs take up the space where the lungs and heart should be developing. This underdevelopment of the lungs is called pulmonary hypoplasia.
Healthy lungs have millions of small air sacs (alveoli), which resemble a balloon filled with air.With pulmonary hypoplasia, there are fewer air sacs than normal, the air sacs that are present are only able to partially fill with air, and the air sacs deflate easily due to a lack of a lubricating fluid called surfactant. When these conditions are present, the baby may be unable to take in enough oxygen to stay healthy [and live].(http://www.cincinnatichildrens.org/health/info/chest/diagnose/diaphragmatic-hernias.htm)
These babies are immediately intubated, allowing a ventilator to breathe for them. The very sick babies will require ECMO, which is a heart/lung bypass machine. They will undergo repair surgery only when they are stable, and if they are strong enough to survive it, will go on to have many years of doctor's appointments, hospitalizations, reherniations, surgeries, struggles to learn to eat, occupational therapy, physical therapy, and speech therapy. GERD (gastroesophageal reflux disease) is commonly diagnosed in CDH children and can cause them numerous long-lasting problems such as feeding aversions, pain, esophageal erosion, vomiting. They are oftentimes labeled as failure-to-thrive due to their inability to take in enough calories to properly grow.
Most parents of CDH children will not hold their baby for the first time until several weeks or months after birth. Many times, the first chance these parents will hold their child will be when the child is dying in their arms.CDH is a devastating diagnosis and the survival rate has not improved much in many years.
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CDH LINKS:
- What is CDH? Children's Hospital of Philadelphia (CHOP)
- What is CDH? Boston Children's Hospital
- Sofia's CDH InfoSpot
- Gene Review: CDH Overview
- CDH Video from CHOP
- CDH Study at Mass General
- What is CDH? Children's Hospital of Wisconsin
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CDH SUPPORT:
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