Congenital diaphragmatic hernia happens in early pregnancy. It starts when an organ or organs move from a developing baby’s belly to the chest. The organs crowd the lungs, keeping them from growing to a healthy size.

The Fetal Care Program at OHSU Doernbecher Children’s Hospital has the Pacific Northwest’s most advanced care for congenital diaphragmatic hernia. You’ll find:

• One of the few programs in the U.S. with full care for you and your baby in the same place
• A team of specialists with deep experience researching and managing congenital diaphragmatic hernia
• State-of-the-art imaging
• Treatment before birth for the most serious cases
• Help planning a safe delivery
• Advanced care to protect your baby’s lungs after birth
• Follow-up care as your child grows

We also coordinate tests and appointments so you’ll have fewer visits.

Understanding congenital diaphragmatic hernia

Congenital diaphragmatic hernia, also called CDH, happens in about 1 in 3,000 babies. It's often found by ultrasound between 16 and 20 weeks of pregnancy. Congenital means the condition is present before birth.

It occurs in a baby’s diaphragm, a thin, sheet-like muscle that stretches around the inside of the torso and separates the chest and belly.

A hernia happens when an organ or organs push through an opening or weak spot in muscle or tissue, ending up where they don’t belong.

In CDH, a baby’s diaphragm doesn’t fully close, allowing organs such as the stomach, liver or intestines to move from the belly to the chest. They may press on the lungs and sometimes the heart.

Doctors don't always know why CDH happens. In some cases, it can be related to a genetic condition.

At an expert program like ours, survival rates for babies with no other major health concerns approach 85%. That compares with a national rate of 60-70%.

Types of congenital diaphragmatic hernia

There are three main types.

• Left-sided CDH (L-CDH): This is the most common type, making up 85-90% of cases. It often involves the stomach, liver, intestines and spleen.
• Right-sided CDH (R-CDH): This type makes up 5-15% of cases. The liver is almost always in the chest.
• Bilateral CDH: This is a rare type. The diaphragm has gaps on both sides.

Tests for CDH

• Ultrasound: This scan uses sound waves to show your baby’s body. We use high-resolution ultrasound for more detail.
• Fetal MRI: This scan creates detailed pictures of your baby’s lungs and other body parts.
• Fetal echocardiogram: This checks for heart conditions that happen in 30–40% of babies with CDH.
• Genetic counseling and tests: CDH can be related to over 70 genetic conditions. A counselor can help you decide whether to have tests and understand the results.

Treatment

OHSU was one of the first places to repair CDH with minimally invasive surgery, starting in 2004. This type of surgery uses smaller cuts and allows faster recovery.

Delivery and newborn care

We help you plan a safe delivery at OHSU. At birth, your baby will receive breathing support:

• Ventilation: Your baby is given a breathing tube for immediate protection. Your baby is also put on a ventilator, a machine that helps with breathing. We use gentle techniques to protect your baby’s lungs. We may also use other types of ventilation for more protection and breathing support.
• ECMO: If needed, your baby is put on ECMO. This is a machine that does the work of the lungs and heart while they rest and heal.

After birth, our Level IV Neonatal Intensive Care Unit provides the top level of newborn care.

Once your baby is stable, our pediatric surgeons move organs into their proper place. They also repair your baby’s diaphragm.

Follow-up care

Our commitment to you and your baby continues after you go home. We’ll work with you and your doctors to support your baby’s:

• Lung and heart health: Your baby will have regular checks for asthma and high blood pressure in the lungs (pulmonary hypertension).
• Nutrition: Your baby will get support for growth and acid reflux (GERD), which affects up to 75% of babies with CDH.
• Development: Your baby will be screened for developmental milestones. You’ll have access to physical and occupational therapy.

Resources

• Ladybug CDH Foundation
• Surviving CDH
• The Incredible Teddy Foundation
• Fore Hadley Foundation