Children's Hospital Colorado

Congenital Diaphragmatic Hernia (CDH)

What is congenital diaphragmatic hernia?

Congenital diaphragmatic hernia (CDH) is a birth defect that occurs when a baby's diaphragm doesn't form correctly during fetal development, typically around 9 to 10 weeks' gestation. This leaves an opening between the chest and abdominal cavities, allowing abdominal organs to "herniate" (protrude or enter) into the chest cavity and prevent lung development.

What does CDH mean?

  • "Congenital" means the defect is present at birth.
  • "Diaphragmatic" means the defect affects the diaphragm, a dome-shaped muscular structure that's just below the lungs (but above the contents of the abdomen) and assists in breathing. You can think of a typical diaphragm like a wall that helps keep the contents of the chest (lungs and heart) separate from the contents of the abdomen (liver, stomach, bowel, etc.).
  • "Hernia" refers to the bulging of an organ or tissue through an abnormal opening in the surrounding muscle or connective tissue (fascia), one that wouldn't be there in normal development.

How does CDH affect an unborn baby?

While in the womb, babies don't use their lungs; mothers pass oxygen and nutrients the baby needs through the umbilical cord. For babies with CDH, their abdominal organs are in the chest where their lungs are supposed to exist and grow, and as a result:

  1. The lungs don't grow as they should.
  2. The blood vessels in the lungs don't form correctly.
  3. Some organs may not develop normally.

How does CDH affect a baby after birth?

CDH is a life-threatening defect because it limits the lungs' growth and can seriously affect a baby's ability to breathe at birth. These babies will need breathing support as soon as they enter the world. Because of their underdeveloped lungs (a condition called pulmonary hypoplasia):

  • Newborns won't be able to take in enough oxygen.
  • Not enough blood flows to their lungs.

It's critical that moms deliver babies diagnosed with CDH before birth in a center that has experience in caring for the complex needs of these vulnerable newborns. Babies with CDH require an all-hands-on-deck approach during the first hours of life.

At the Colorado Fetal Care Center at Children's Colorado, we have a dedicated CDH team consisting of neonatal and pediatric CDH experts. They specialize in complex delivery planning for babies with CDH, their treatment, management and ongoing care.

What causes CDH in babies?

A diaphragmatic hernia usually develops about 9 to 10 weeks into pregnancy, but might occur as early as 5 to 6 weeks. There is no known way to prevent CDH, and there is nothing a mother did or does that could cause her unborn baby to develop CDH.

CDH may occur as an isolated problem (known as isolated CDH) or in association with other abnormalities. In about 10 to 20% of cases, CDH is caused by or associated with a genetic syndrome, such as Down syndrome (trisomy 21), Edward's syndrome (trisomy 18) or Patau syndrome (trisomy 13). CDH is accompanied by another congenital defect (organ structure abnormality) 60% of the time, and 40% of those defects will be a congenital heart defect.

Who gets CDH?

CDH affects approximately one in 2,500 births.

At the Colorado Fetal Care Center, we see and treat more babies with CDH than nearly any other fetal care center in the world. That means here, the rare is common and our multidisciplinary, dedicated CDH care team has more experience caring for the complex needs of these critically ill infants. With some of the best outcomes in the nation, we're uniquely poised to create the best possible outcomes for babies with CDH.

What is the CDH survival rate?

The success of CDH treatment often depends upon whether other anomalies are present and a singular survival rate for CDH is hard to determine. Worldwide, the survival rate for CDH has increased over recent decades from 50% to 70 to 80% according to some research. At Children's Colorado, our team has achieved some of the highest congenital diaphragmatic hernia survival rates in the country, particularly given the severity and complexity of cases we treat. The average survival rate for babies with CDH at Children's Colorado is 82%.

Can babies with CDH breastfeed?

Babies with congenital diaphragmatic hernia usually do not feed by mouth for the first several days or weeks of life, but breast pumping and milk storage can be arranged. Breast milk contains important nutrients for your baby and breastfeeding is encouraged. Eventually, feeding at the breast may be possible.

CDH success story

Emma's chances for survival were very slim. Her parents moved from Seattle to Denver to increase the chances and they were rewarded generously.

Contact the Neonatal Intensive Care Unit

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Children's Colorado in the news

9News

Doctors didn't think this baby would ever see her first birthday

May 22, 2019

When Kelly and Matt Shearer learned their unborn baby had a rare and life-threatening condition called congenital diaphragmatic hernia (CDH), they decided to move to Denver to give their baby a chance at life. Ken Liechty, MD, performed Emma's CDH repair when she was 1 day old; now she's celebrating her first birthday.