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Congenital Diaphragmatic Hernia Action Day
Congenital Diaphragmatic Hernia Action Day
April 19, 2023
Congenital Diaphragmatic Hernia Action Day
April 19 is Congenital Diaphragmatic Hernia Action Day. Join us to help give children a voice!
Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when a baby’s diaphragm fails to fully form. As a result, abdominal organs enter the chest cavity and prevent lung growth. CDH occurs in 1 in every 2,500 babies. In other words, this equals 1600 babies born each year with CDH in the United States alone. The overall survival rate is 50%. The cause is unknown. Wear a cloud awareness ribbon pin to recognize this important awareness day. These pins are available on our site and the demand for them is high during Congenital Diaphragmatic Hernia Action Day.
What is Congenital Diaphragmatic Hernia Action Day?
Congenital Diaphragmatic Hernia Action Day is an annual awareness campaign. This event takes place on April 19. It aims to raise awareness of a birth defect of the diaphragm, which is a life-threatening pathology and a major cause of infant mortality.
Congenital diaphragmatic hernia (CDH) occurs when the diaphragm fails to completely close during development. As a result, abdominal organs enter the chest cavity and prevent lung growth. About 50% of newborns diagnosed with CDH die of two major complications: incomplete development of the lungs (pulmonary hypoplasia) and pulmonary hypertension (high blood pressure in pulmonary blood vessels).
CDH is as common as spina bifida (split spine) and cystic fibrosis. The cause is unknown. Very people know about or are aware of CDH. CDH Awareness Day disseminates information about this congenital effect.
CDH Action Day events and activities include (but are not limited to) awareness events, fundraisers, educational campaigns, parades, etc. On April 19, people wear the pink, blue and yellow CDH Awareness Ribbon, donate, and volunteer to help raise awareness and take action.
When is CDH found?
CDH is typically found during the 20-week ultrasound. CDH affects about one in every 3,000 pregnancies, occurring with relatively high frequency for a birth defect.
Congenital diaphragmatic hernia (CDH) can cause long-term damage if it’s severe or persistent. Some long-term effects include:
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Lung issuesCDH can cause underdeveloped lungs, also known as pulmonary hypoplasia, which can lead to respiratory problems. Underdeveloped lungs can also make infants more susceptible to lung infections, such as pneumonia, which can be a lifelong issue.
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Heart diseaseCDH can cause pulmonary hypertension, which is high blood pressure in the lungs’ arteries. This can strain the heart’s right ventricle and lead to heart failure.
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Gastrointestinal issuesCDH can cause feeding difficulties, such as compression of digestive organs or gastroesophageal reflux disease (GERD).
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Skeletal development problemsCDH can cause chest wall deformities, scoliosis, and inguinal hernias.
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Hearing lossChildren who have been intubated on a ventilator, treated with ECMO, or received multiple medications may be at risk for hearing loss.
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Neurodevelopmental delaysCDH survivors may have increased rates of learning disabilities. For example, these include attention deficit hyperactivity disorder (ADHD), and autism.
Each CDH case can vary greatly. Learn More on Congenital Diaphragmatic Hernia Action Day
The hole caused by the undeveloped diaphragm may be small and allow a limited amount of intestine into the chest. Or it may be large and allow a greater amount of abdominal contents including the intestine, stomach, spleen and liver. The amount of abdominal contents that migrate into the chest affects whether the lungs are moderately small or severely small.
CDH Treatment: Expert care to help lungs grow
Treatment requires surgery to gently move the organs that have migrated back into the abdomen and close the hole in the diaphragm. This creates space in which the lungs can then grow.