Congenital Diaphragmatic Hernia

The team at Johns Hopkins All Children’s Hospital provides expert care for families who have received a CDH diagnosis for their baby. We’re ready to discuss with you how we can help your patient.

In the past when families received a congenital diaphragmatic hernia (CDH) diagnosis for their baby, few options were available. But that has changed.

The team in the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, provides expert, compassionate care for families during a highly stressful time. We can offer hope to your patient that was previously out of reach for many families—a hope reflected in our experience and survival rate.

What makes us different

• Survival: Infants treated here experience a survival rate of greater than 90% even in severe cases, which exceeds national benchmarks.
• Dedicated center: Our dedicated 15-bed inpatient care unit is the first in the nation to provide 24/7 specialized care for infants with CDH.
• Leadership: The center is led by David Kays, M.D., who has treated nearly 600 children with CDH, and has spent two decades researching and redefining care for babies with CDH.
• Team: The team includes specialists in surgery, critical care, neonatology, cardiology, neuropsychology, pulmonology, GI, and other specialties to meet the individual needs of each patient. Each member of the team brings experience in applying their expertise in their specialty to the care of babies with CDH. Nurses in the CDH Center are part of the hospital’s Magnet-designated nursing team. Magnet-designated refers to the highest recognition a hospital can receive for nursing excellence and high-quality patient care, from the American Nurses Credentialing Center.

Consistent care for every baby

Our patients are treated by a team that understands the importance of consistent care based on a treatment plan that is personalized for every baby. Our focus on post-natal management has helped us achieve survival levels not previously thought possible, even in severe cases.

Many patients with more severe CDH require extracorporeal membrane oxygenation (ECMO), which is an integral part of the care options at Johns Hopkins All Children's. While national survival of CDH patients that require ECMO is 50%, CDH patients that require ECMO at Johns Hopkins All Children's survive at rates in excess of 90%.

CDH spectrum of disease

CDH is typically diagnosed during the 20-week ultrasound, and cases of CDH can range greatly in severity. The hole in the diaphragm that categorizes CDH allows the intestine, stomach, spleen, kidneys or liver to migrate into the chest cavity, which prevents the lungs from growing to a normal size before birth.

When CDH is the only defect present, severity depends on the position of the liver and size of the lungs (lung to head ratio, or LHR). The liver is present in the chest in more severe cases. In the most severe cases infants may experience long-term issues including feeding difficulties and gastrostomy before discharge. Cases in which the liver is not present in the chest are less severe.

The majority of CDH infants have an isolated CDH defect, or only minor associated anomalies. The CDH team at Johns Hopkins All Children's is aggressive in treating for survival in all of these patients, regardless of the severity of the CDH. A small percentage of infants with CDH also face life-threatening additional anomalies, such as major chromosomal defects, univentricular heart defects or bilateral CDH. These patients face additional complex physiologic issues beyond CDH that are addressed on a case-by-case basis.