Congenital Diaphragmatic Hernia Clinic
Children with congenital diaphragmatic hernia (CDH) get the highest level of care at Phoenix Children’s from expert doctors who personalize care for each child.
At Phoenix Children’s Hospital, our multidisciplinary team of specialists provides care in every area related to CDH. They combine their skills to develop a personalized care plan for each child with CDH. Count on us for the best possible care — before and after your baby is born.
What Is Congenital Diaphragmatic Hernia Clinic (CDH)?
CDH is a defect that occurs while the baby is developing before birth. 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.
With extra organs in the chest, the baby’s lungs don’t have room to develop properly. Common symptoms of CDH in newborns include difficult or rapid breathing and blue discoloration of the skin due to lack of oxygen. Other conditions, such as pulmonary hypertension, can develop in children with CDH.
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.
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.
How Is Congenital Diaphragmatic Hernia Diagnosed?
About 80 percent of babies with CDH are diagnosed before they are born, with high-quality fetal ultrasound. The Fetal Care Center 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.
Small CDH defects are sometimes missed in early ultrasound scans and then found later in the pregnancy, as the 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 right away.
How Is Congenital Diaphragmatic Hernia Treated?
Your CDH team will develop an individualized care plan specifically for your child. Phoenix Children’s has extensive services for children with this condition, including:
Fetal Care Center
Our multidisciplinary team of specialized pediatric providers in our Fetal Care Center 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 precisely arranged at the time of the baby’s birth.
Neonatal Intensive Care Unit (NICU)
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. The team will routinely meet at your child’s bedside to coordinate care and ensure the best possible outcome.
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 the surgical repair is healing well.
Cardiology and Pulmonary Hypertension
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. And our pulmonary hypertension specialists are experts at managing CDH patients with heart conditions, from the NICU through long-term follow-up care.
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.
Children with CDH may be hospitalized for an extended period of time, which can lead to delays in normal development. Phoenix Children’s 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.
What to Expect at Phoenix Children’s
When you and your child come to Phoenix Children’s, 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 the 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 clinic, where a team member will measure your child’s height, weight and vital signs.
- Each of the various providers will take turns visiting you and your child in a clinic room. They will assess your child and talk with you about the care plan.
Your CDH team will collaborate on their recommendations, and 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.
Meet Your Team
Our CDH team includes doctors from the following three specialties:
These doctors will all see your child on the same visit when you return for follow up, which reduces the number of times you must come to the hospital.
Our team also includes care coordinators and specialty nurses, and your child will benefit from our occupational and physical therapists, feeding therapists and developmental neurologists.