Johns Hopkins All Children's Hospital

Congenital Diaphragmatic Hernia

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

In the Johns Hopkins All Children’s Congenital Diaphragmatic Hernia Program, families find hope during a time that may otherwise feel hopeless.

Our care team led by CDH expert David Kays, M.D., is rewriting the book on CDH survival and outcomes. 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.

At Johns Hopkins All Children's, you’ll find dedicated experts, compassionate care, innovative techniques, and cutting-edge technology and equipment.

It all starts with one fundamental element—hope.

Dr. Kays and our care team believe your baby can survive and thrive, and our hope is rooted in our experience. While the national survival rate for this condition is between 65 and 70 percent, infants treated at Johns Hopkins All Children’s experience a survival rate of greater than 90 percent*. Throughout his career, Dr. Kays has treated more than 360 newborns with CDH.

Julian's parents refused to give up hope. 

 

Watch Julian's story.

One-year-old Julian was born with congenital diaphragmatic hernia, a life-threatening abnormality that occurs when the muscle between the chest and the abdomen don’t form properly. Julian and his family traveled across the country to receive care at Johns Hopkins All Children's.

Over the past 20 years, Dr. Kays has treated more than 400 infants with congenital diaphragmatic hernia. Due to our leading survival and outcomes, our program is growing rapidly and we expect to treat 60 infants with CDH this year.

Why choose Johns Hopkins All Children’s CDH Program?

What sets our CDH program apart is our interdisciplinary approach to care. Our CDH team includes surgeons, neonatologists, cardiologists, neuropsychologists, nutritionists and other specialists, who work in tandem to provide the best care for your child. Our experts also provide specialized care for infants and children who have been treated for CDH and are later readmitted due to illness. Because of our team’s singular focus on CDH, our team is best equipped to provide treatment when a child who has been treated for CDH requires additional care.

Among the reasons to choose Johns Hopkins All Children’s for your baby’s care:

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 have pioneered “kinder, gentler ventilation” for CDH infants. Dr. Kays has published his work and outcomes on this ventilator care for nearly 20 years.

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. The U.S. survival rate of CDH patients who require ECMO is 47 percent, according to the Extracorporeal Life Support Organization. Since starting the CDH program at Johns Hopkins All Children's Hospital in 2016, infants in our program with this condition who require ECMO survive (and thrive) at a rate that exceeds 90 percent. 

Appropriate and best 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 and his team have spent decades studying the best 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 achocardiography, 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 outcome with your baby’s quality of life and you and your baby’s day-to-day experience while in the hospital.

Leading survival and outcomes: Left liver-up CDH is the most severe anatomic subset of CDH. It’s more severe on average than left liver-down or right CDH. The national survival rate for left liver-up is 45 percent. Our published survival in 2015 was 75 percent. Today, it’s even higher.

CDH 90 percent survival rate infographic

We help our patients lead productive, healthy lives. Treating and caring for babies with CDH is about both survival and quality of outcome. 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 and help you make the best decisions for your baby. 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 & Family Support page.

*Infants with severe CDH plus a highly severe second anomaly such as uni-ventricular heart defect, severe chromosomal defects, or severe bilateral CDH, face complex physiologic challenges we have generally not been able to overcome. This statement relates to the spectrum of CDH excluding those with a highly severe or lethal second anomaly).
 

Questions? Give us a call

Our team is always ready to answer your questions and discuss any concerns you may have about your baby.

Request an appointment 

Submit a request for an appoinment and our team with reach out to you to see if we are the best care for your child.

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

 It’s a little easier when you know what to expect and understand what’s going on around you. We hope this guide will be a handy source of information about how our Hospital works. If you have questions or need assistance, don't be afraid to ask. We are here to help.