Center for Congenital Diaphragmatic Hernia Patient Information and Resources

A congenital diaphragmatic hernia (CDH) diagnosis can be scary and confusing. Don’t give up hope. Our experts at Johns Hopkins All Children’s Hospital are here to help.

In the Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia (CDH) in St. Petersburg, Florida, our collaborative approach brings together specialists across multiple disciplines to provide your child with comprehensive, research-based care.

There are a number of additional resources available to assist you and your family while your child receives care for CDH at Johns Hopkins All Children's.

Traveling for CDH Care

  • Available accommodation options will be discussed with families prior to traveling to St. Petersburg. 
  • All expectant mothers in the program will be tested for COVID-19 upon admission for delivery at Bayfront Baby Place. 
  • For information on our visitor policy, please see our Visitor Information page.

Patients & Families Resources

Our Patients & Families Resources section provides important information about your stay. Our downloadable Inpatient Family Guide provides valuable practical information on hospital policies, resources, dedicated family spaces and more. 

Family Support

It is important to know that you are not alone in your child’s CDH diagnosis. In addition to the expert care team here to help you at Johns Hopkins All Children’s, two independent, third-party organizations offer assistance to families affected by CDH. The Tiny Hero Foundation and the Fore Hadley Foundation offer supportive, hope-filled communities that help individual families and support CDH research efforts.

Ronald McDonald House

Families who travel from out of town for care may request a room at any of the three Ronald McDonald Houses located on campus. The Ronald McDonald House can act as a home away from home, supporting families whose children need inpatient care, and who live a distance from the hospital.

Integrated Care Management

Social, spiritual and emotional support play an important role in family-centered care. Social workers, pastoral care, and our palliative care team called Team Hope are all available through Integrated Care Management to help guide you through difficult passages in care.

Patient Relations Representatives

Dedicated Patient Relations representatives are available at any point during your child’s inpatient stay to help you with a number of concerns—whether it is helping you voice your opinion, understand and navigate your child’s treatment, listening to any general concerns and providing support.
 
To speak with a Patient Relations representative, call 727-767-2110 from 8 a.m. to 6 p.m. Monday through Friday.

Health Insurance Considerations and Timelines

Each insurance plan has specific benefits and providers available in their network. Many hospitals check to make sure a patient’s insurance is active, but do not check benefit exclusions before a consultation. At Johns Hopkins All Children’s Hospital, we work with the insurance company to obtain authorization for the entire course of treatment (e.g., maternal consultation, fetal echocardiogram, inpatient stay for the baby, etc.). This is an in-depth process and ensures you do not receive unexpected medical bills after discharge.

If you are seeking services at Johns Hopkins All Children’s Hospital, a patient account coordinator will work with you through the entire process. He or she will contact you within a week of your inquiry to our clinical team. Please feel free to direct any questions or concerns to your coordinator. They work directly with the clinical team to submit all relevant clinical documentation to the insurance company for processing.

Frequently Asked Questions

Contact Us

For more information or to make an appointment, give us a call at 727-767-3587.

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You can also request an appointment using our online form. A member of our team will contact you.

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The links provided above are for informational purposes and solely for the user's convenience.

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.

Read our Inpatient Guide

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.

    CDH patient Birdie at Johns Hopkins All Children's Hospital
  • 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.

    Patient baby Cristian with Dr. David Kays 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.

    Siblings Jaxson and Adelyn who both had Congenital Diaphragmatic Hernia (CDH) and were treated by David Kays, M.D., pictured with their sister, Ava