The Center for Fetal Diagnosis & Treatment at Children’s Hospital of Philadelphia Celebrates Congenital Diaphragmatic Hernia (CDH) Awareness Month

CDH Affects 1 in Every 2,500 Live Births

Published on in CHOP News

Each April, the Center for Fetal Diagnosis & Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP) celebrates Congenital Diaphragmatic Hernia Awareness Month. Congenital diaphragmatic hernia (CDH) occurs when the diaphragm muscle fails to close during prenatal development, and the organs in the abdomen (stomach, intestines and/or liver) migrate into the chest through this opening, resulting in limited room for lung growth.

This can cause reduced blood flow to the lungs and pulmonary hypertension, as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays. CDH can occur on the left side, right side or, very rarely, on both sides. In severe cases, it is deadly if left untreated. 

About 1,600 babies are born with CDH every year in the U.S. CHOP treats more CDH cases than any other center in the country. This high volume, multiplied over the past 20 years, provides unparalleled experience, resulting in a number of advancements in the perinatal management of CDH patients, including:

  • Advanced imaging to accurately predict prognosis and plan for delivery.
  • The creation of a neonatal surgery team, which provides immediate stabilization after birth in the Garbose Family Special Delivery Unit (SDU), which was created specifically for the healthy mother whose pregnancy is affected by a birth defect like CDH.
  • Performing postnatal surgical repair while a baby remains on a radiant warmer bed in the Newborn/Infant Intensive Care Unit (N/IICU) to reduce the risks of transport to the operating room.
  • The creation of very detailed optimal care guidelines for CDH care in the SDU and N/IICU.
  • The establishment of the Pulmonary Hypoplasia Program (PHP), a multidisciplinary team that provides long-term follow-up and complete care for babies with conditions that cause small, underdeveloped lungs.

“CDH continues to be a life-threatening birth defect that impacts many families, yet it is often unheard of,” says N. Scott Adzick, MD, Director of the CFDT, and Surgeon-in-Chief. “The fact is that every 10 minutes a baby is born with CDH. While we are making great advancements, there is still much work that needs to be done in terms of spreading awareness and education.”

In many instances, CDH can be successfully treated with specialized prenatal care, delivery and surgery after birth. However, despite these strides, risks remain for infants with severe CDH. Because of these risks, CHOP is leading a research study on a fetal surgery treatment option called fetoscopic endoluminal tracheal occlusion (FETO).

During FETO, a balloon is placed in the unborn baby’s airway and remains there for a few weeks. Fluid builds, causing the lungs to grow. The larger the lungs, the greater the chance of survival. 

“I’m confident that by pursuing the FETO feasibility study, we will be able to offer new hope to families who receive a severe CDH diagnosis,” says Holly Hedrick, MD, Pediatric and Fetal Surgeon, and principal investigator of the FETO trial. “Since the early 1990s, our team has been investigating tracheal occlusion in the laboratory as a viable treatment option.”

Dr. Hedrick also leads CHOP’s long-term follow-up research for CDH through the PHP, a program devoted to optimizing the medical and neurodevelopmental outcomes of children treated for CDH and other lung conditions. Currently, the program follows more than 600 patients.

Learn more about CDH patients and read their stories.

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