Children's Hospital Colorado
Colorado Fetal Care Center

Congenital Diaphragmatic Hernia (CDH) in Babies

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What is congenital diaphragmatic hernia?

A congenital diaphragmatic hernia (CDH) occurs when a baby's diaphragm doesn't form completely during fetal development. 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 condition is present at birth.
  • Diaphragmatic means the condition affects the diaphragm, a dome-shaped muscular structure that helps your baby breathe. It’s located below the lungs and above the contents of the abdomen. 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 opening in the surrounding muscle or connective tissue, one that wouldn't be there in typical development.

How does CDH affect babies before birth?

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:

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

How does CDH affect babies after birth?

CDH is a life-threatening condition 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. Due to their underdeveloped lungs, a condition called pulmonary hypoplasia, newborns won't be able to take in enough oxygen and will not receive enough blood flowing to their lungs.

It's critical that moms deliver babies who are diagnosed with CDH before birth in a fetal care 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 surgical CDH experts. They specialize in complex delivery planning for babies with CDH, as well as their treatment, management and ongoing care.

What causes congenital diaphragmatic hernia 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 the mother did or does that could cause their unborn baby to develop CDH.

CDH may occur by itself (known as isolated CDH) or with other conditions. In about 10% to 20% of cases, CDH is caused by or associated with a genetic disorder, such as Down syndrome (trisomy 21), Edward's syndrome (trisomy 18) or Patau syndrome (trisomy 13). About 60% of the time, CDH occurs with another congenital condition that affects organ structure and 40% of the time those are congenital heart defects.

How common is CDH in babies?

CDH affects approximately 1 in 2,500 births.

The Colorado Fetal Care Center is one of the world’s leading centers treating CDH and we see more cases than most other hospitals. That means here, the rare is common and our CDH care team has more experience caring for the complex needs of these critically ill infants. Already with some of the best outcomes in the nation, we're always looking for ways to deliver even better care for babies with CDH.

What is the CDH survival rate?

The success of CDH treatment often depends on if a baby has other health issues and a singular survival rate for CDH is hard to determine. Worldwide, the survival rate for CDH has increased over the decades from 50% to between 70% and 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 the cases we treat. The average survival rate for babies with CDH at Children's Colorado is consistently over 80% and we’re always working to improve that number.

Can babies with CDH breastfeed?

Babies with congenital diaphragmatic hernia usually don’t feed by mouth for the first several days or weeks of life, but mothers can pump breast milk and store it. Breast milk contains important nutrients for your baby and we encourage breast milk to be used. Our lactation specialists and neonatal nurses have experience helping babies with CDH feed and can help find the best solution for your family. 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 her chances and they were rewarded generously.

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Frank Chow, MD

Frank Chow, MD

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Anna Jones, MD

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Debnath Chatterjee, MD

Debnath Chatterjee, MD

Anesthesiology, Anesthesiology

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