What is CDH? 10 facts you need to know about the serious birth defect

June is CDH Awareness Month, and the charity CDH UK explains all about this potentially fatal diaphragm abnormality in babies.

You may not have heard of CDH, but one thing's for sure – you wouldn't want your baby to have it.

CDH is short for congenital diaphragmatic hernia, a serious congenital abnormality in which there's a hole in a baby's diaphragm – the sheet of muscle that aids breathing, and keeps the heart and lungs separate from the organs in the abdomen.

When a baby has CDH, some of its abdominal organs, such as the bowel and liver, go through the hole, or hernia, in the diaphragm and take up some of the space where the lungs should develop.

During June's CDH Awareness Month, which culminates on CDH Awareness Day on June 28, the charity CDH UK hopes to make more people aware of the condition and the problems it can cause.

Here are 10 important facts about CDH:

1. The condition occurs in about one in 2,500 births.

2. Only about half of babies born with CDH survive.

3. The 50% of CDH babies who die usually do so in the first few weeks after birth as a result of respiratory failure, usually because of severely underdeveloped lungs.

4. CDH accounts for around 8% of all major congenital abnormalities.

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5. CDH is detectable in prenatal scans, often as early as 12 weeks, although it's more commonly diagnosed at the routine 20-week scan. Some cases aren't diagnosed until after birth.

6. The hole in the diaphragm can range from a small hole to the total absence of a diaphragm.

7. There are different types of CDH, and more than 90% of cases are left-sided, where varying amounts of abdominal contents go into the chest cavity including the bowels, stomach, spleen and liver. In right-sided CDH, it's usually only the large bowel and/or liver that herniates. Bilateral CDH, which affects both sides, is uncommon.

8. Babies born with CDH normally need urgent medical attention when they're born and help with breathing in a neonatal intensive care unit.

9. The hernia is surgically repaired after a baby responds to treatment and its blood gases, oxygen levels and general progress is good. The surgeon makes a small abdominal incision and moves the abdominal contents back to where they should be before repairing the hole in the diaphragm either with stitches or a Gore-tex patch, depending on the size of the hole.

10. CDH complications can include feeding problems, reflux, speech and developmental issues, and hearing loss. Re-herniation is uncommon, but signs include a baby or child being unwell, loss of appetite, abdominal discomfort and/or pain, difficulty breathing and vomiting.

For advice about CDH, call CDH UK on 0800 731 6991.

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