Congenital diaphragmatic hernia (CDH) occurs before birth while your baby is developing. It happens when your baby’s diaphragm – the muscle that separates their chest and abdomen – doesn’t develop fully before birth. This creates an opening that allows their abdominal organs such as the stomach, liver, intestines and spleen to move into the chest, preventing your baby’s lungs from fully developing.

Phoenix Children’s Congenital Diaphragmatic Hernia Center is the largest, most experienced CDH program in Arizona. We offer family-focused care that starts at diagnosis and stays with you through every stage of care from delivery through surgery and long-term condition management.

We know CDH affects many different aspects of your child’s health. Our multidisciplinary team is made up of experts with advanced expertise in every area related to CDH, including:

  • Advanced fetal imaging: We perform nearly 300 fetal MRIs each year, giving you the foundation for an accurate, precise diagnosis and personalized treatment planning.
  • Center for Fetal and Neonatal Care: Prenatal diagnosis, birth planning and delivery coordination
  • Center for Heart Care: Management and treatment of ongoing lung and heart issues related to CDH, including pulmonary hypertension
  • Congenital Diaphragmatic Hernia Clinic: Advanced diagnosis and long-term treatment for children with CDH
  • Developmental Pediatrics: Offers guidance on early childhood development and growth for children with neurodevelopmental disorders
  • Level IV Neonatal Intensive Care Unit (NICU): Advanced newborn care for infants facing complex health challenges such as CDH
  • Palliative Care: Offers support and an empathetic ear as you navigate the difficult decisions and emotional challenges that accompany a CDH diagnosis
  • Pediatric Surgery: Experts in minimally invasive and traditional open surgery techniques and procedures
  • Pulmonology: Management and treatment of ongoing respiratory issues related to CDH
  • Perinatal Mental Health: Available to support families with challenging diagnoses before and after the baby is born

Why Choose Us?

  • Comprehensive, collaborative care. Our multispecialty team includes experts in every aspect of CDH diagnosis and treatment, including fetal care, surgery, neonatology, pulmonology, cardiology, nephrology and therapy services. We support families through every stage from prenatal diagnosis through delivery, surgery and long-term management.
  • High volumes, excellent outcomes. We care for more children with CDH than any other program in the state and we are considered a high-volume center by national benchmarking standards, giving our team unmatched expertise that leads to better outcomes and improved quality of life for your child.
  • Advanced treatment options, lifelong support. Our nationally recognized ECMO program offers life-saving support with outstanding results that rival the best in the nation. Through our Newborn Early Screening Team (NEST) Clinic, we ensure you have the resources and support you need to address your child’s health challenges from infancy through childhood.

Frequently Asked Questions

Congenital Diaphragmatic Hernia (CDH) is a defect that occurs before birth while your baby is developing. It happens when the diaphragm, which is the large muscle that separates the chest from the abdomen, doesn’t form correctly. This leaves a hole that allows abdominal organs such as the stomach, liver, intestines and spleen to move into the chest.

Because they have extra organs in their chest, the lungs of babies with CDH don’t have room to develop properly. There is a wide range of severity in this condition. It often involves only one side of the diaphragm, usually the left side. In a small percentage of cases, symptoms don’t occur until later in life.

Common symptoms of CDH in newborns include:

  • Difficult or rapid breathing
  • Blue discoloration of the skin due to lack of oxygen
  • Rapid heartbeat

Lungs can adapt and grow for several years, even though they weren’t formed normally at birth. This means that many children with CDH are able to lead normal, active lives. However, some children with more severe CDH may have long-term issues with breathing, feeding, growth and development.

Your baby will need expert medical care from the moment they arrive. It is important that you plan to deliver at a hospital that is well equipped to provide that care. It is likely that your delivery will be scheduled in advance via C-section or induction. NICU doctors and nurses, and respiratory therapists will be at your baby’s birth to provide care right away.

If your baby comes earlier than planned, go to the nearest hospital. Your baby can be transferred to Phoenix Children’s via ambulance or helicopter after delivery.

The first 24 hours of your baby’s life is a critical time. Our doctors and nurses will work around the clock to keep your baby stable.

In the delivery room, we will intubate your baby. This means we will put a breathing tube in your baby’s airway so a ventilator can help them breathe. Your child will also have IV and central lines to give them fluid and medicine.

You may not be able to hold your baby for days, weeks or months, depending on how they are doing. We know this is hard on parents. Please know that your baby can hear your voice and knows that you are near. Our social workers are also here to help and guide you during this stressful time. They can answer your questions and will point you to any available resources. Cameras at each bedside allow you to view your child on your phone or mobile device when you can’t be there in person.

  • Breathing: Because CDH impacts lung development, some babies need oxygen due to pulmonary hypertension. A tracheostomy is a hole that is placed in the baby’s airway (neck) for a breathing tube or trach. They may require a nasal cannula or a tracheostomy to go home.
  • Feeding: Some babies with CDH need support to eat due to feeding intolerance, aversion or oxygenation, which causes sleepiness and low energy. Your baby may need a tube that goes in their nose and down into their stomach. This is called an NG/NJ tube and carries food directly to your baby’s stomach. NG/NJ tubes are used as a short-term solution. If your baby continues to have feeding trouble, they may need a G-tube. A surgeon will place this tube directly through their abdomen to provide nutrition and medicine.
  • GERD (reflux): CDH causes some babies to have gastric acid come up from the stomach into the esophagus. This causes discomfort and pain and may require medical or surgical treatment.
  • RSV: This virus presents as a common cold and is very dangerous to children with compromised lungs. Your doctor will likely recommend a yearly RSV vaccine for the first two to three years of your child’s life.
  • Re-herniation: This is not common but can happen in rare situations. If a re-herniation occurs, another surgical procedure will be needed to fix it. We monitor this with X-rays. During the first year of a child’s life, we take X-rays frequently and then move to yearly X-rays for ongoing monitoring.

Call the doctor if your child has new symptoms including but not limited to:

  • Abdomen sticks out (distension)
  • Abdomen looks caved in (concave or scaphoid)
  • Blue color of the skin (cyanosis)
  • Trouble breathing/fast breathing
  • Decreased number of wet diapers/decreased urination
  • Dizziness or fainting spells
  • Excessive sleepiness or fatigue
  • Fast heart rate
  • Fever and chills
  • Inability to tolerate feeds
  • Inability to tolerate oral medicines
  • Increased reflux
  • Loss of appetite
  • Nausea and vomiting with a green color or bowel contents
  • Persistent diarrhea or bloody diarrhea
  • Persistent fussiness
  • Poor weight gain
  • Redness, swelling, discharge or odor from wound site
  • Unequal chest development where one side of the chest is larger than the other
  • Worsening pain in the chest and/or abdomen