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Congenital Diaphragmatic Hernia

The diaphragm is a thin muscle between the chest and abdomen that aids breathing. In some unborn babies, the diaphragm does not form properly and a hole develops. This opening allows organs, such as the intestines, to move upwards into the chest where they interfere with lung growth.

This condition is known as congenital diaphragmatic hernia (CDH).

Diagram comparing a healthy baby's anatomy to one with CDH

Congenital Diaphragmatic Hernia Treatment: Why Choose Us?

Specialists at the Fetal Care Center are experts in CDH diagnosis and treatment. Successful diagnosis and treatment of CDH requires a dedicated team approach starting while the baby is still in the womb. Our comprehensive CDH team includes high-risk obstetricians, sonographers, pediatric surgeons, neonatologists, neonatal nurse practitioners and specially trained ICU nurses. Once your baby is born, the team provides expert 24/7 care to all CDH patients. This team approach to care paired with our clinical excellence has allowed for a nearly 90% survival rate for our CDH patients, while the national CDH survival is around 70%.

About Congenital Diaphragmatic Hernia

CDH is a rare birth defect, affecting approximately 1 out of every 2,500 newborns.

When abdominal organs enter the chest cavity through the diaphragmatic hernia, they may affect the heart and lungs. Some babies with CDH experience:

  • Heart problems: The heart may not form properly, or pressure from the intruding organs may strain and weaken the heart.
  • Lung problems: If the lungs don’t have room to grow and develop, they may be too small to take in enough oxygen at birth. Your baby may have breathing problems or develop pulmonary hypertension. This serious condition causes high blood pressure in the lung’s blood vessels.
  • Chromosomal abnormalities or defects: Babies with CDH are more likely to have chromosomal abnormalities, genetic disorders or other birth defects.
  • Feeding issues
  • Delay in age-appropriate milestones: Most babies with CDH benefit from physical therapy to strengthen their muscle control. Some may need speech therapy as they learn languages.
  • Behavioral issues: Autism is reported in 11% of CDH survivors. Our CDH clinic follows this closely.

Learn more about CDH.

Causes of Congenital Diaphragmatic Hernia

CDH has no known cause, though some genetic syndromes are associated with CDH. Our genetic counselors can help you understand your future risk of having another child with CDH.

Diagnosing Congenital Diaphragmatic Hernia

Our ultrasound experts perform more than 5,000 ultrasound tests every year, giving us special expertise in detecting problems early. During your ultrasound, a maternal-fetal doctor is present to provide information about your unborn baby’s condition and treatment options.

If your doctor suspects CDH, you may need additional tests, such as:

  • Fetal magnetic resonance imaging (MRI): This imaging procedure uses a magnetic field (not radiation) to provide detailed information about your unborn baby’s organs, including the heart, lungs and abdomen. This test is safe for your unborn baby.
  • Amniocentesis: Your doctor tests a small amount of amniotic fluid to check for chromosomal or genetic disorders.
  • Fetal echocardiogram: This ultrasound imaging test assesses the structure and health of your unborn baby’s heart.

Learn more about high-risk pregnancy tests.

Treating Congenital Diaphragmatic Hernia

CDH is a very serious condition. Nearly 90% of babies born with CDH cared for by our hospital have survived and were able to go home. Throughout pregnancy, you undergo regular ultrasounds to monitor development of your baby’s organs, specifically the heart and lungs.

Research shows that babies with CDH have the best chance of survival when they are born at a hospital that specializes in high-risk pregnancies and has immediate access to advanced care in a Level IV newborn intensive care unit (NICU), like our Women & Infants Center. Your baby’s treatment may include:

  • Intubation and ventilator: All babies with CDH are intubated (given a breathing tube attached to a ventilator) in the delivery room.
  • Inhaled nitric oxide: Your baby breathes in nitric oxide to treat pulmonary hypertension, a major complication of CDH.
  • Treprostinil: Administered through an IV, this medicine is used to treat very severe pulmonary hypertension. It has even prevented the need for ECMO.
  • Extracorporeal membrane oxygenation (ECMO): Babies with very severe pulmonary hypertension, who need extra help breathing, may be placed on this advanced heart and lung support system. CDH patients have a high likelihood of needing ECMO (Nationally, up to 55%). In our hospital, about 30% of babies with CDH are managed with ECMO.
  • Surgery: Repair of CDH is not a medical emergency. Depending on your baby’s medical condition, your baby may undergo surgery in the first week after birth (or months later) to close the hole in the diaphragm.

CDH babies can experience long-term health problem. It is important to have a multidisciplinary clinic care and follow your child as they grow so they can thrive. Our St. Louis Children’s Hospital CDH clinic allows your child to have coordinated care between neonatologists, pulmonologists, neurologists, specializing in CDH care, and also dieticians, occupational therapists, physical therapist and speech therapists. They start seeing babies in this outpatient clinic as soon as they are discharged from the hospital until they are teenagers. Many of these medical providers are the ones who cared for your child in our NICU.

Contact Us

To make an appointment with a Washington University fetal care specialist at the Women & Infants Center, call 866-943-1503.