CDH Questions & Answers

Cause of CDH: CDH occurs when the diaphragm fails to close or form properly around the eighth week of gestation. As a result, abdominal organs enter the chest cavity, restricting lung growth. The exact reason for this occurrence is still unknown.

Possible Causes: The cause of CDH is yet to be fully understood. While some cases may have a genetic component, it is also associated with certain environmental factors such as exposure to chemicals like Nitrofen or pesticides and imbalanced Vitamin A and Folic Acid levels. However, the exact causal factors remain to be identified, and ongoing research, like our CDH Patient Registry, aims to study common factors to better comprehend and prevent this birth defect.

Self-Blame: There is no known way to prevent CDH, and it is essential not to blame yourself for something without a known cause. Most cases are not preventable through prenatal actions.

Prevention: Until a cause or preventive measures are discovered, CDH cannot be prevented. While taking prenatal vitamins can be beneficial, excessive intake can be harmful. At present, there is no way to predict or prevent CDH.

Prevalence: CDH occurs in approximately 1 in every 2500 births, making it more common than certain rare occurrences like being struck by lightning.

Finding Support: By joining CHERUBS, we can connect you with other families who have experienced CDH, offering a support network and valuable information. Your doctor can also help you connect with other families in your area.

Supportive Listening: At CHERUBS, our team members understand your situation and are available to lend a listening ear when you need to talk. You are not alone on this journey.

Recurrence Risk: Without a family history of CDH or genetic abnormalities, the chances of recurrence in another child are estimated to be around 2%. We recommend consulting a genetic counselor to discuss your specific odds.

Early Detection: Thanks to advanced technology, CDH can now be detected as early as 16 weeks gestation using ultrasound.

No Medical Error: CDH is a congenital birth defect, not caused by any actions taken during pregnancy or delivery. There is nothing the doctors or hospital could have done differently to prevent CDH.

Survival and Surgery: The outcome of CDH surgery varies for each child. Survival rates can differ even after surgery, and factors like defect size and overall health play a role in the child’s outcome.

Potential Complications: Each CDH case is unique, and potential complications can vary. While many cherubs live normal lives, some may face challenges such as feeding problems, asthma, reflux, hearing issues, cerebral palsy, and developmental delays.

Supportive Measures During Pregnancy: Educating yourself and following a healthy lifestyle can be beneficial during pregnancy. Steroid treatments for lung development and the option of fetal surgery are also available in certain cases.

Delivery Considerations: If your child is diagnosed with CDH in utero, delivering at a larger hospital with experienced pediatric surgeons and access to an ECMO machine can be advantageous, should it be needed.