We provide advanced treatment, compassionate care and hope to families with babies diagnosed with CDH.
In the Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia (CDH) in St. Petersburg, Florida, families find hope during a time that may otherwise feel hopeless. Led by CDH expert David Kays, M.D., our 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 breathe.
Johns Hopkins All Children’s founded the first inpatient center in the country dedicated solely to the treatment of CDH. Infants treated at Johns Hopkins All Children’s experience a survival rate greater than 90% even in severe cases of CDH*, which exceeds national benchmarks. 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 the CDH Center at Johns Hopkins All Children’s
Our dedicated team provides your child and your family with personalized, advanced care. Our approach has led to excellent outcomes in CDH care, even in severe cases. Our team includes surgeons, neonatologists, cardiologists, neuropsychologists, nutritionists and other specialists who work in tandem to provide expert care for your child. We provide:
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. We have exceptional survival rates in cases that require it, and we understand how to send almost all babies home breathing on their own.
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. Our team communicates the plan for your child’s care, and because our team is dedicated to CDH care, we provide consistent oversight that makes a difference in the experience for you and your baby.
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.
*While the majority of infants with CDH have an isolated CDH defect or only minor associated anomalies, 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 that are addressed on a case-by-case basis.
Traveling for care?
We treat children from across the country, and the world, in the CDH Center at Johns Hopkins All Children’s in St. Petersburg, Florida. We have several resources to assist you and your family as you travel for care, including information about requesting a room at one of several Ronald McDonald Houses on our campus.
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.
Find hope from the CDH community
Get support from families like you
Read inspiring stories about our families:
Birdie Advocates for Johns Hopkins All Children’s
Diagnosed with congenital diaphragmatic hernia (CDH) shortly after birth, Birdie received care at Johns Hopkins All Children’s and is now a happy and healthy 1-year-old. She and her family recently traveled to Washington, D.C., to share her story as part of the Children’s Hospital Association’s Family Advocacy Day annual event.
A Birthday for Cristian
Born with multiple medical challenges, including congenital diaphragmatic hernia, baby Cristian gets more than a fighting chance at Johns Hopkins All Children’s Hospital.
Double the Diagnosis: Siblings Both Born with Congenital Diaphragmatic Hernia
Congenital diaphragmatic hernia (CDH), a rare birth defect, occurs in about one in every 3,000 live births. It is even more unusual for a family to have more than one baby with CDH. But parents Ally and Jimmy were comforted by the care of David Kays, M.D., and the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital.