Planning for Your First High-Risk Appointment: Questions to ask your prospective CDH Team

A Message of Compassion and Strength for Families Facing CDH

Now that you received your congenital diaphragmatic hernia (CDH) diagnosis, you are wondering how you can gain a better grasp on CDH and how to make the best decisions for your unborn child. This is no small feat on its own and requires a team of highly skilled medical professionals to help guide you through this journey. But what are the questions that you should be asking this team?

This journey is not the one you imagined, and it may feel unbearable at times. But please know this: by showing up, asking questions, and standing beside your baby, you are already proving your strength as parents. You are not alone in this. Others have walked this path, and there is a community of survivors, medical teams, and organizations like Charlie Polizzi's Warrior of the Angels here to walk alongside you. 

The goal of this blog is to provide insight into what questions you should ask your prospective CDH medical team. These questions are designed to help you make a more educated decision on which team is the best fit for you and your family.

What questions to ask to expand your knowledge of CDH

Fear and the unknown may affect your logical mind. Building your understanding of CDH and the community around it will help you in your new diagnosis. Your prospective team will discuss the spectrum of CDH diagnoses and the treatments involved. Building your confidence with your team and the understanding of your new diagnosis is important to being comfortable with them and their ability to treat your unborn child. Below is a list of resources you will to gain a better understanding of CDH as a diagnosis.

• Congenital Diaphragmatic Hernia Treatment | Preparing for High-Risk Appointments

• Congenital Diaphragmatic Hernias | Symptoms, Treatment & Life Expectancy

An experienced CDH team will not leave you with many questions and will provide you with what your baby's case and treatment plan will look like. What you will most likely want to ask is "What does this mean for my baby?" Your medical team will be able to provide a realistic perspective on this question and many others. It will be hard to remember all the answers or to ask all the questions so we have provided a few below to consider asking your doctors:

1. Can you explain the severity of my baby’s CDH?

Ask about the size and location of the hernia, which organs are involved, and whether it is left- or right-sided. Understanding the anatomy helps you visualize what’s happening inside your baby’s body.

2. What do the measurements mean?

You may hear terms like lung-to-head ratio (LHR) or observed-to-expected (O/E). Ask your doctor to explain what these numbers mean in your case and how they relate to lung development and survival chances.

3. Are there any additional anomalies or genetic conditions?

CDH can sometimes occur with other syndromes or chromosomal abnormalities. Knowing whether your baby’s condition is isolated or part of a broader diagnosis will shape your treatment plan. If there are cardiac abnormalities, having a team that includes cardiac specialists would be an important factor in your decision.

Things to consider when meeting your CDH Team

The first CDH hospital appointment is not just to gain a better understanding on your baby's diagnosis, although this is the prime objective of this appointment, it is also to gauge the hospitals knowledge of CDH and its treatment options by your prospective medical team.

CDH is a complex diagnosis with treatments that are just as complicated, and having the right team behind you and your baby is imperative. We have compiled a collection of resources so that you can better understand the complexities of your baby's diagnosis.

Having a CDH hospital that has a high volume of CDH patients typically means better results.

• Do they have a dedicated CDH team?

• Does the CDH hospital have ECMO?

• Where will my child be born?

• Will my child have to be transferred or is delivery in the same unit in the building?

These questions can give you a better understanding of the complexities of CDH delivery and early treatment. Another question would be to ask about the follow-up care after being discharged. You and baby will most likely need continued care as your child grows up and into adulthood.

• What to Ask Your Doctor — Tiny Hero: Real Hope for CDH

• Real Talk CDH: Dr. Harting • Real Talk CDH

• CDH-Parent-Reference-Guide.pdf

How to choose your CDH team?

There will never be a truly accurate response to this question. Every family will have a different way of making this decision due to the vast array of factors that impact it. You have just been given devastating news and will likely feel overwhelmed when meeting with your prospective CDH team. The best anyone can do is to be present for your unborn baby and to take in the information while also listening to your heart and how the team makes you feel.

Factors to consider when making a decision on who will be your CDH team and in someways your ‘cheer team’.

• The logistics of the birth. Does the CDH Hospital have a dedicated birthing center within its CDH center? This eliminates the need for transfers at birth. These babies are very fragile at birth and transports can be very risky.

• Does the team have experience with gentle ventilation? This type of ventilation is important in CDH babies since their lungs are so small.

• FETO (Fetoscopic Endoluminal Tracheal Occlusion) availability, experience and success rates. FETO can be used on more severe cases prior to delivery to help the baby's lungs develop in the womb. Having a program with experience and success with FETO is important when your baby has a more severe case.

• The volume of CDH patients seen at the CDH hospital every year. A higher volume of patients seen can be correlated to higher levels of experience and a higher rate of success for CDH patients.

• The severity of cases seen at the CDH hospital and the correlating success rates. For example, cases with right side CDH vs. left sided CDH, liver up vs. no liver up, high vs. low LHR, other birth defects and or other complications

• Your assigned surgeon's techniques and success rates. When the repair surgery is performed, how it is performed, the degree of stability needed to perform the repair (i.e. ECMO or not) and will you have one doctor overseeing all your child's care and their willingness to collaborate with other CDH specialist when they are looking for more insight that may not be their specialty.

• Support services that are available for families. Ask about counseling services, family housing options, support groups, and how you can connect with other CDH families who’ve walked this path. These services will provide first-hand experience and much needed mental and emotional support during your CDH journey.

• The multidisciplinary expertise of the CDH team. The best CDH teams include maternal-fetal medicine specialists, neonatologists, pediatric surgeons, cardiologists, respiratory therapists, pulmonologists, and social workers- all working together to support your family.

• The knowledge of the CDH team and how they responded to your questions. Having a team that is not only fighting for your baby, which is of course the most pertinent part of their job, but willing to listen and to help you through this journey. This may mean providing clear explanations for the treatment plan in place and what and why they are performing certain treatments, why they schedule repair when they do, and medications they provide and what they are being used for.

• Relocation Factors such as living arrangements, older children and costs.

• ECMO availability, the total number of patients seen that are placed on ECMO each year and the types of ECMO used at the hospital. This can really show how knowledgeable and experienced they are with the most severe cases. There are many factors that need to be understood when a CDH baby goes onto ECMO.

• What your heart tells you after hearing the whole story from your CDH team. This should not be underestimated as a factor in your decision. Your logical mind and your emotional mind will be playing tug of war when you make this decision. A mother knows best is a well-known phrase for a reason but know that sometimes the logical mind might be pulling back for a reason that you do not yet know. Find someone to help you balance your logical and emotional mind when making this decision.

  
  

No matter what you choose, know that you are an amazing parent and your baby loves you no matter the outcome. A negative outcome does not mean you did anything wrong or that your team made a poor decision on treatment. These babies conditions are complex each requiring tailored, personalized treatment and care.

Emotional Support and Community Resources

The journey through congenital diaphragmatic hernia treatment is never easy, but no parent should walk it alone. 

Charlie Polizzi's Warrior of the Angels Foundation is dedicated to raising awareness, supporting families, and funding research. At Charlie Polizzi's Warrior of the Angels, families can find resources, education, and a community that understands the heartbreak and the hope of CDH. 

Additional Trusted Resources: 

• Children’s Hospital of Philadelphia – CDH Program 

• Johns Hopkins All Children’s Hospital – CDH Program 

• Fore Hadley Foundation – CDH Support and Research 

Frequently Asked Questions About CDH High-Risk Appointments

Can I get a second opinion and not have the same tests completed again?  Many times, of CDH hospitals will utilize the scans of the other hospitals as long as they fulfill their own requirements.

When I return home after my initial visit and scans from my CDH hospital who do I follow-up with? This is dependent on your treatment plan and will be discussed with the team that day. Many times, regular follow-up should be done locally with designated follow-up appointments and relocation scheduled with your CDH team.

How can parents prepare for their 1st visit?  By researching CDH, writing down questions, bringing support, and organizing medical information, families can feel more empowered and less overwhelmed. Your plan may change throughout the day and having a framework in place will help to build some stability into the day.

A Final Note 

It’s okay to ask questions things more than once. This is an emotional and complex journey—no one expects you to remember every detail or medical term. Write things down, bring a partner or friend to appointments, and take notes during discussions. 

Your voice matters. The more informed you are, the more empowered you become to advocate for your baby’s care. 

At Charlie Polizzi’s Warrior of the Angels Foundation, we know firsthand the weight of a CDH diagnosis. Our mission is to support families, raise awareness, and provide resources so you never have to face this alone. 

If you’re preparing for your first high-risk appointment, visit our resources page for helpful guides and insights.  

Moving Forward with Strength and Hope

The first high-risk appointment is one of the most challenging days of the CDH journey. It is filled with long hours, medical terminology, and emotional weight. Yet it is also the beginning of a carefully planned path toward congenital diaphragmatic hernia treatment. 

Though this journey may feel isolating, families are never alone. With guidance from expert medical teams and the support of organizations like Charlie Polizzi's Warrior of the Angels, parents can face this difficult diagnosis with strength, knowledge, and hope. 

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