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. 
  • Families will follow all screening and safety processes when they arrive on campus for appointments and testing services. 
  • All expectant mothers in the program will be tested for COVID-19 upon admission for delivery at Bayfront Baby Place. 
  • While COVID-19 is present in Florida, we are limiting visitors for the health and safety of our patients and families. Please review our COVID-19 information page for the latest updates to our visitor policy
  • Upon discharge, some state and local governments may have restrictions in place. For more information and travel guidance, check with the state or local health department where you are, along your route, and at your planned destination. 

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, or email us at any time.

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

Q: How long does this process take?
A: The process takes an average of one to six weeks depending on the insurance plan and member’s benefits. PPO plans typically have out-of-network benefits and are the fastest to clear. If the patient has an HMO plan and does not live in the geographic area of the hospital, it will take longer. Once the member is eligible, we work to secure in-network benefits and work through the prior authorization process.

Many hospitals cannot accept out-of-state Medicaid because there is a preferred provider in the local market. At Johns Hopkins All Children’s Hospital, we assist families who have issues with their current health plan with locating a marketplace plan to cover services to be rendered in Florida if they have a qualifying life-changing event.

Q: Will my out-of-state Medicaid cover treatment in Florida?
A: It is important for families to contact us so we can determine your health insurance authorization process or explore alternative funding. Your patient account coordinator will discuss your options and answer any questions you have about your coverage.

Q: Why does this process take longer at some hospitals than others?
A: Each facility may approach this process a little differently. 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 once born, etc.). This is an in-depth process and ensures you do not receive unexpected medical bills after discharge. If the insurance company denies any part of the treatment, we work with the family to appeal the decision. The appeal process can take three to six weeks.

If you have questions about this process, please contact Patient Accounts Administration at 727-767-3030.

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

Read inspiring stories about our families:

Dr. David Kays Offers CDH Families Hope

When David Kays, M.D., was a child, his mother gave him a book about medicine, helping to set him on the path to becoming a surgeon. Now he is one of the best in the nation at treating congenital diaphragmatic hernia (CDH), and serves as medical director of the hospital’s Center for CDH, the nation’s first inpatient unit solely dedicated to treating CDH. He talks about his journey to medicine, and how he came to specialize in CDH.

Read More

Birdie’s Surprise

Babies with congenital diaphragmatic hernia (CDH) are often diagnosed before birth, but for Birdie, the diagnosis didn’t come until shortly after she was born. She and her family were referred to the Center for CDH at Johns Hopkins All Children’s, where babies like Birdie receive the specialized care they need to grow and thrive.

Read More

Giving Babies a Brighter Future

Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia offers families the compassionate and sophisticated support they need to thrive. Planned gifts from people like Judy Keyak help make those miracles possible.

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.