Pregnancy following a Congenital Diaphragmatic Hernia (CDH) Diagnosis and Initial Appointments
- Charlie's Warrior of the Angels
- Nov 25
- 7 min read
A Message of Compassion and Strength for Families Facing CDH
Your initial CDH high-risk appointment is over — so what happens next? It is completely normal to leave that first visit with your mind racing and your heart full of questions. Where do you go from here? Who manages each part of the follow-up care? How will you prepare for a possible relocation? Where will you stay? Will your baby be okay? Some of these questions may have been touched on during your appointment, but it is natural to feel overwhelmed as everything begins to sink in.
What you may not realize yet is that you are now part of a large, international community of medical experts and families who have walked this journey before you. Many parents become experts in their own way through lived experience, and they understand the emotions and decisions you are facing. This community quickly becomes a source of support that you never expected to need but will be grateful to have as you prepare for the birth of your baby.
The months ahead can feel like a blur, filled with appointments, planning, and big decisions. Through it all, know that you are not alone. Families, survivors, medical teams, and organizations such as Charlie Polizzi’s Warrior of the Angels are here to walk alongside you and offer guidance and strength along the way.
The purpose of this blog is to offer insight into what prenatal care typically looks like after a CDH diagnosis and to outline the decisions many families face before delivery. While this is not medical advice, it is shared with compassion, understanding, and the hope that our collective experience can help you feel more informed and supported during this time.
Prenatal Care following your Congenital Diaphragmatic Hernia (CDH) Diagnosis
Receiving a CDH diagnosis comes with an overwhelming amount of information — more than most people could reasonably process in one sitting. Turning that information into an organized plan of care can feel daunting. Having structure and support in place will be essential as you move through the rest of your pregnancy. Please remember that none of this is expected of you alone. Lean on the CDH community, your family, and trusted resources such as Charlie Polizzi’s Warrior of the Angels.
If relocation is part of your care plan, you will likely continue seeing your local providers until the transition occurs. In most cases, your local physicians will work collaboratively with your designated CDH team. Your medical records should be shared between both groups to ensure everyone has a complete understanding of your baby’s condition and your care plan. Collaboration is key throughout the CDH journey and helps support clear communication and continuity in your treatment.
Many families find it helpful to use a spreadsheet or similar tool to keep track of important contacts, appointment schedules, and key details in one place. This can also serve as a record for documents you’ve signed, medications planned for after delivery, and any other critical notes along the way. Platforms like SharePoint, Google Drive, and OneDrive can help you store these materials securely while keeping them easily accessible to those who need them.
Potential Additional Testing & Procedures
CDH cases have a wide range of outcomes and severities. Within the range of these cases there are even more complex and individualized treatment plans. Most CDH pregnancies progress normally, as the baby is safe inside the mother's womb. CDH pregnancies are more likely to experience polyhydramnios, which is an increase in amniotic fluid, as CDH babies cannot always swallow as well. Polyhydramnios can trigger preterm labor in some
more severe cases. If diagnosed early enough, medication may be provided or excess amniotic fluid may be removed. Fluids levels can be monitored via an ultrasound.
As discussed in our September Blog, Fetoscopic Endoluminal Tracheal Occlusion (FETO) may be offered in the most severe cases of CDH, and only certain hospitals perform this experimental procedure. If you are a candidate for this procedure, you will relocate earlier and be monitored very closely by your team for signs of preterm labor and possible other complications. FETO is meant to help the lungs grow while inside the womb to hopefully make treatment easier and more successful when born.
Relocation Planning
Relocation is a stressful additional component to many CDH pregnancies and births. Many families will relocate to a CDH Hospital with more experience with CDH treatment and all the complexities involved with this diagnosis. Most of these hospitals have access to Ronald McDonald Houses but there are not always rooms available when you need them. They work very hard to accommodate all families, when possible, to ensure that your experience is as smooth as feasibly possible. Hospital staff are typically very good at assisting with this process, but you do have to advocate for you and your family and ensure a plan is in place if the Ronald McDonald House is not available.
Your family may also choose to rent an apartment or house near the hospital to best accommodate older children and family. You should discuss with your hospital coordinator whether there are local rentals that assist families with cost reductions, that need to relocate on a short-term basis due to necessary medical treatments.
Location is a very important aspect to consider when you obtain a short-term lease as you are typically required to be within a specific travel time to the hospital, especially towards the end of your pregnancy. If FETO is performed this travel time will need to be shorter as there is another level of complexities to be considered, such as preterm labor and the baby not being able to be delivered with the balloon intact.
If financial assistance is needed in order to relocate, there are many organizations that provide grants to families facing relocation for the delivery and treatment of a CDH baby. Some of these foundations are listed below:
For many, the thought of relocation is daunting or even impossible. Know that there are resources to assist you in the process and if it is not feasible there may be other plausible options for you closer to home. Check out our blog Planning for Your First High-Risk Appointment: Questions to ask your prospective CDH Team which will assist you in making an informed decision on who your team will be for your CDH baby.
No matter what you choose, know that you are an amazing parent and your baby loves you no matter what 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 after birth.
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:
Frequently Asked Questions About the Post Diagnosis CDH Pregnancy
How is the initial process of staying at the Ronald McDonald House handled and who initiates the request for a room?
The hospital staff, such as social workers, care managers, nurses or other medical personnel, handles the initial steps of obtaining a room for your child's stay at the Ronald McDonald House near the designated hospital. You can search for chapters on the Ronald McDonald House Charities (RMHC) main webpage to investigate specifics for each house, the link is below.
As an example of the RMHC protocol below is the link to the Philadelphia RMHC.
How close do I have to stay to the hospital as my pregnancy progresses?
This question really is dependent on your hospital staff's recommendations based on many factors that may include:
History of preterm labor
Polyhydramnios
FETO
Additional contributing factors such as heart conditions
A Final Note
CDH is scary and never anything a parent wants to unwillingly become an expert in, but you and your baby are so strong. You may become an expert because, as some parents learn to navigate life at home you will be learning treatment plans and what every number on every machine your child is attached to means. This may not seem fair and that you are carrying a load that may crush you but know that you are not alone and you will take one step at a time, no matter how small, forward. You may be thrown back at times but don't let the setbacks stop you. CDH is not a highway, it is windy road with many unknowns along the way.
Try to remain as rational as you can while also listening to your heart. Sometimes your heart knows things that your mind doesn't want to accept. You may feel like you will never be able to put the pieces together of the diagnosis you have been handed, but piece by piece you will begin to understand your child's CDH and the plan put in place by your team.
Finally, and maybe most importantly, CDH is not your fault, you did not cause this. The fact that you have made it this far in this blog proves the love you have for your unborn baby. You can do this and have faith in your baby's ability to fight on their journey to home.
Moving Forward with Strength and Hope
The second half of a CDH pregnancy may be traumatizing and completely different than what you dreamed about but there has been so much positive change in the field of CDH care, even since our founders Kristin & Tom Polizzi lost their angel, Charlie, in 2018. Take this journey one day, hour, minute or second at a time. Yes, sometimes all you may be able to manage is each second or minute but that is still progress and completely normal, as hard as it may seem.
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 their CDH journey with strength, knowledge, and hope.
*DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Comments