Congenital Diaphragmatic Hernia Clinic

About 80% of babies with Congenital Diaphragmatic Hernia (CDH) are diagnosed using high-quality ultrasound before they are born. The Center for Fetal and Neonatal Care at Phoenix Children’s has the latest in imaging services, including fetal MRI and advanced ultrasound. Our radiology staff includes multiple physicians with expertise in advanced fetal imaging techniques so you can be confident you’re getting accurate results.

Small CDH defects are sometimes missed in early ultrasound scans and then found later in the pregnancy, as your baby grows. Babies who have symptoms of CDH after they are born can be diagnosed with imaging tests. The doctor will also look for irregular chest movements, lack of breath sounds on one side and bowel sounds heard in the chest.

If your unborn child is diagnosed at another center, our CDH team will organize a plan for the best course of action. This may include arranging for your child to be born where Phoenix Children’s doctors are available to help immediately.

How is Congenital Diaphragmatic Hernia Treated?

Treatment for CDH varies according to the severity of your child’s condition. Some children need extensive care after birth while others recover quickly. At Phoenix Children’s Congenital Diaphragmatic Hernia Center, care begins as soon as CDH is suspected – often before your baby is born.

Our team uses a three-phase approach that ensures your child receives the care they need.

Before Birth: Prenatal Planning and Preparation

CDH is typically discovered through a routine ultrasound during pregnancy. When that occurs, you’ll be referred to our Center for Fetal and Neonatal Care for further testing and support.

Care in this phase includes:

  • Consultation with experts specializing in all aspects of CDH care
  • Emotional and logistical support from our fetal care coordinators throughout your pregnancy
  • Fetal ultrasound, MRI and echocardiogram before consultation to assess the condition’s severity

At Birth: Expert NICU and Surgical Care

After birth, the highly trained team in our Level IV Neonatal Intensive Care Unit (NICU) oversees your infant’s treatment.

Care in this phase includes:

  • Delivery planning
  • ECMO treatment
  • Surgical repair, including minimally invasive and open procedures

After Discharge: Life-long Follow-up and Support

We offer long-term condition management to address any pulmonary, cardiac, gastrointestinal or developmental needs that arise.

Care in this phase includes:

Personalized, Patient-Centered Care

At the Phoenix Children’s Diaphragmatic Hernia Center, our multispecialty team works together to create a custom care plan for each child. Your child’s team includes specialists in every area related to CDH, including:

A number of congenital heart problems can occur with CDH. Children with this condition can also have pulmonary hypertension, which can lead to heart problems. The team at Phoenix Children’s Heart Center has world-class experience across a broad spectrum of care. We bring together teams from various programs to deliver advanced care for complex as well as simple heart conditions. Our pulmonary hypertension specialists are experts at managing CDH patients with heart conditions, from the NICU through long-term follow-up care.

When you and your child come to Phoenix Children’s Congenital Diaphragmatic Hernia Clinic, you can expect the highest-quality care available. If you are new to our clinic, we’ll ask you to sign a consent form to get medical records from other hospitals or clinics. This allows our doctors to review your child’s medical history before your first clinic visit.

We’ll also arrange for your baby to have an ultrasound of their heart before your first visit. This is called an echocardiogram, and it will give your child’s doctors a head start on assessing your child and planning their care.

Initial clinic visits typically proceed with the following steps:

  • Your child will have a chest X-ray done in the Radiology Department.
  • You will check into the Congenital Diaphragmatic Hernia Clinic, where a team member will measure your child’s height, weight and vital signs.
  • Each of our various providers will meet with you and your child in a clinic room to assess your child and talk with you about their care plan.

Your CDH team will collaborate on their recommendations and develop a personalized care plan for your child. You will have an opportunity to ask questions and talk about any concerns you may have. When you go home, you’ll be given a written copy of your child’s care plan.

After your visit to the CDH clinic, your team will let you know when to return. This will be at least once a year for a comprehensive checkup. Some children need more frequent visits with each specialty to ensure they are doing well.

Children with CDH may be hospitalized for an extended period of time, which can lead to delays in normal development. Phoenix Children’s Congenital Diaphragmatic Hernia Clinic has a strong team of developmental pediatric therapists who can assess your child and provide targeted therapy to help with their development. This may include physical therapy, occupational therapy and feeding therapy.

Our multidisciplinary team of specialized pediatric providers in our Center for Neonatal and Fetal Care are among the best in the U.S. We work with your obstetric (OB) and maternal fetal medicine (MFM) providers to review your delivery plan and make sure everything is ready for your baby’s birth.

Children with CDH come to the NICU right after they are born. The Phoenix Children’s Level IV NICU offers the highest level of care for newborns with health problems. Our expert team of neonatologists, pediatric specialists and dedicated NICU nurses all have extensive experience in managing the most critically ill newborns.

Your child’s length of stay in the NICU depends on many factors, including their gestational age at birth, the severity of their CDH and their response to treatment. Our team will routinely meet at your child’s bedside to coordinate care and ensure the best possible outcome.

Our palliative care doctors provide support and resources to help you through the stress, uncertainty and emotional demands that often accompany a diagnosis of CDH.

The specialists in our pulmonology team are experts at diagnosing and treating a wide range of lung issues that can affect children with CDH. These specialists, along with our clinical staff, treat more than 17,000 patients with respiratory diseases and disorders each year. They help your child with long-term follow-up care to ensure their lungs continue to heal and grow to their maximum potential.

Our surgical team is highly skilled and experienced in procedures to repair CDH. They will discuss with you the different surgical approaches, including minimally invasive techniques. Some children need more than one surgery to reach their best recovery from CDH.

In some cases, babies need to be supported by a heart-lung bypass machine called extracorporeal membrane oxygenation, or ECMO. Your team will discuss the risks and benefits of this treatment with you. They will also monitor your child closely to ensure their surgical repair is healing well.