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In a congenital diaphragmatic hernia (CDH), your child’s diaphragm does not fully develop, which allows abdominal organs to move into the chest, preventing normal lung development. In many cases, diaphragmatic hernias can be successfully treated in newborns, and the outlook for babies born with CDH is increasingly positive. Children with CDH require follow-up care and treatment over time to minimize related health concerns, such as lung problems, breathing difficulties, gastrointestinal problems, and growth and development concerns. The Congenital Diaphragmatic Hernia Program at Boston Children’s Hospital is dedicated to treating and managing long-term follow-up care for children born with this complex health concern.

Our approach to congenital diaphragmatic hernia

Because every case of CDH is different, it’s important to have an experienced team of clinicians on your side. In the Congenital Diaphragmatic Hernia Program at Boston Children’s Hospital, pediatric surgeons and specialists in pulmonary medicine, gastroenterology, otolaryngology, cardiology, orthopedics, child development, nutrition, and genetics work together to treat all aspects of your child’s health. We treat more than 20 newborns with CDH each year, giving us the deep expertise necessary to care for these children. As a result, our inpatient survival rate for the highest risk groups of babies with CDH is consistently 10 percent higher than that of other centers dedicated to treating this condition.

When CDH is suspected prenatally, Boston Children’s Maternal Fetal Care Center assists families through a coordinated program of care, including diagnosis and counseling, prenatal monitoring, treatment at delivery, and postnatal care. We are also a Center of Excellence for extracorporeal membranous oxygenation (ECMO) and have published extensively on this topic. This advanced technology functions as a temporary replacement for a critically ill child’s lungs and is beneficial for babies with CDH.

What to expect at our clinic

Some babies come to our program when a diagnosis of CDH is made after birth. In addition, our team oversees an outpatient CDH clinic. Established in 1991, the clinic is longest-running follow-up clinic of its kind in the world and monitors and treats the long-term health needs of CDH patients, from early childhood through young adulthood.

Our typical outpatient clinic runs several Mondays of every month, excluding holidays. During your visit, you and your child will see multiple clinicians from specialties including general surgery, pulmonology, nutrition, and developmental medicine. A typical individual visit with a physician can last between from 15 to 45 minutes, and you can expect to wait about 15 to 20 minutes between providers. This is so our team can gather to share information and go over clinical notes with each other before the next physician sees you. Please make sure your child has a chest x-ray at Boston Children’s prior to your clinic visit. If your child requires other tests on the day of your visit, you can expect to be at the hospital for six to eight hours.

For more information about the clinic, please contact the Department of Surgery.