Johns Hopkins All Children's Hospital

Congenital Diaphragmatic Hernia

The Johns Hopkins All Children’s Congenital Diaphragmatic Hernia Program provides advanced treatment, compassionate care and hope to families with babies diagnosed with CDH.

In the Johns Hopkins All Children’s Congenital Diaphragmatic Hernia (CDH) Program, families find hope during a time that may otherwise feel hopeless. Led by CDH expert David Kays, M.D., our dedicated team combines compassionate care, innovative techniques, and cutting-edge technology and equipment to treat babies with CDH.

In CDH, the diaphragm—the muscle that separates the abdomen from the chest—does not develop completely, causing a hole where abdominal organs can migrate into the chest. When that happens, it doesn’t leave enough space for the lungs to develop normally, making it hard for the baby to breath.

Our team includes surgeons, neonatologists, cardiologists, neuropsychologists, nutritionists and other specialists who work in tandem to provide expert care for your child.

Every case of CDH is different—whatever you may have been told about your child’s chances with CDH, we urge you to speak with our team and learn about options for your baby.

We also provide specialized care for infants and children who have been treated for CDH and are later readmitted due to illness.

Why choose Johns Hopkins All Children’s CDH Program

Expert ventilator care: Babies with CDH are born with critically small and fragile lungs. Any lung injury, including from the use of life-saving equipment, can affect a baby’s outcome. Dr. Kays and his team recognize this delicate balance and practice “kinder, gentler ventilation” for CDH infants.

Inclusive and expert use of ECMO when needed: Extracorporeal membrane oxygenation (ECMO) is a form of heart-lung bypass sometimes used in the treatment of more severe CDH patients.

Appropriate care for every baby: Repairing CDH does not automatically make small lungs become big lungs, but it allows the lungs to grow to the fullest extent possible. It can be frightening for parents because babies with severe CDH often get worse for a period of time before they get better after CDH repair.

Dr. Kays has spent decades studying the optimal time to perform CDH repair, and how the severity of the CDH affects the outcome of those decisions. We assess the severity of CDH through multidisciplinary prenatal testing, including ultrasound, fetal echocardiography, fetal MRI and consultation with our surgical team.

Consistency of care: Parents know their child better than anyone, and parents are integral members of the care team at Johns Hopkins All Children's. You’ll never wonder what the plan is, or who is in charge of your child's care. This diligent and consistent oversight makes a difference in you and your baby’s day-to-day experience while in the hospital.

We help our patients lead productive, healthy lives. We know that the number of babies who survive is about how well we take care of both their lungs and their brains. That link is our No. 1 priority every day.

Families that have received a CDH diagnosis for their baby should know they are not alone. Our team is here to answer your questions. In addition, there are a number of resources that can assist you during this challenging time.

The Tiny Hero Foundation and the Fore Hadley Foundation provide support to families affected by CDH. Learn more about them, and other available resources, on the Patient Information & Resources page.

 

CDH care infographic

Questions? Give us a call

Our team is here to answer questions and discuss concerns you have about your baby.

Request an appointment 

Submit a request for an appointment and our team will reach out to you to discuss options.

Read inspiring stories about our families:

Fragile Cargo

A doctor and his team go the extra mile to improve the odds for a baby with life-threatening congenital diaphragmatic hernia

Read More

The Birthday Boys

A first birthday is especially sweet for three babies born with life-threatening congenital diaphragmatic hernia.

Read More

Improving Survival for Infants with Congenital Diaphragmatic Hernia

Pediatric surgeons at Johns Hopkins All Children’s Hospital are pushing survival rates for infants with CDH above 90 percent.

Read More

Prepare for your stay by reading our Inpatient Family Guide

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