Planning for Your First High-Risk Appointment: Understanding Congenital Diaphragmatic Hernia Treatment
- Charlie's Warrior of the Angels
- Sep 27
- 5 min read
Updated: Sep 27
A Message of Compassion and Strength for Families Facing CDH
Receiving a congenital diaphragmatic hernia (CDH) diagnosis is life changing. Many parents hear these words during what should have been a joyful anatomy scan, only to have their world turned upside down. It can feel like stepping into the twilight zone — a tug of war between rational thought and overwhelming emotions.
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 your first high-risk appointment may look like, helping you prepare for the road ahead and giving you the tools to advocate for your baby and yourself.
Why Early Planning Matters After a CDH Diagnosis
Following an initial diagnosis, most families are referred to a maternal-fetal medicine (MFM) specialist. These physicians may then connect families with specialized CDH programs at hospitals such as Children’s Hospital of Philadelphia or Johns Hopkins All Children’s Hospital in Florida. These centers provide a clearer picture of the severity of CDH and begin mapping out treatment options.
While local providers may not always have extensive CDH experience, specialized programs offer advanced testing and access to congenital diaphragmatic hernia treatment plans tailored to each child. This step is essential in ensuring the best possible outcome.
What to Expect at a High-Risk Appointment
A first CDH hospital appointment is typically scheduled around 21 weeks of pregnancy. The day often spans 9–10 hours and includes both testing and consultations with the medical team.
Tests Commonly Completed:
Comprehensive ultrasound
Fetal MRI
Echocardiogram (detailed imaging of the baby’s heart)
Appointments With Specialists:
Fetal therapy coordinator (your point of contact throughout treatment)
Maternal-fetal medicine physician (MFM) caring for the mother
Geneticist (to discuss additional testing such as amniocentesis)
Pediatric surgeon (who will perform congenital diaphragmatic hernia repair after birth)
These conversations can be emotionally draining. Many families find it helpful to bring a trusted family member or friend for note-taking, emotional support, or even virtual attendance.
Understanding Congenital Diaphragmatic Hernia Treatment Options
The testing performed at this appointment provides your team with important measurements, such as the observed-to-expected lung volume and lung-to-head ratio. These figures help determine the severity of the hernia, the likelihood of survival, and whether advanced treatment options may be appropriate.
FETO Procedure (Fetoscopic Endoluminal Tracheal Occlusion): One of the treatment options sometimes discussed is the FETO procedure, a fetal surgery offered at select centers. This intervention is considered for severe cases and involves two procedures:
Balloon Placement: A small balloon is
placed inside the unborn baby’s airway, blocking it temporarily. This causes lung fluid to build and encourages the lungs to grow larger, which may improve survival chances. This usually takes place around 28 to 29 weeks gestation.
Balloon Removal: Several weeks later, the balloon is removed to allow the lungs to mature before birth. This usually takes place around 34 weeks of gestation.
Eligibility for FETO is based on test results, maternal health history, and psychosocial evaluation. Factors such as a history of preterm labor may prevent eligibility. Families who qualify are usually required to relocate near the hospital, typically within 20 minutes of the hospital, earlier in pregnancy to be monitored closely.
Without FETO: Families who are not candidates for FETO will still receive a detailed treatment plan, which may involve regular monitoring, relocation around 36 weeks, and a planned delivery between 38–39 weeks.
Congenital Diaphragmatic Hernia Repair After Birth
Most babies undergo surgical repair after delivery. This procedure involves moving abdominal organs back into the abdomen and closing the hole in the diaphragm. Some cases require a surgical patch if the defect is large. The timing of surgery depends on the baby’s stability after birth.
Regardless of the path, the ultimate congenital diaphragmatic hernia treatment involves surgical repair after birth once the baby is stable enough for the procedure.
How to Get Through Your First Appointment
Preparedness is relative—no one is ever truly ready for the first CDH appointment. Parents may hear difficult statistics, survival rates, or even discussions about termination. It is normal to feel scared and overwhelmed. Understanding what the day will look like helps families focus on listening, asking questions, and processing information.
It is also important to prepare emotionally for the reality that immediate skin-to-skin contact after delivery is unlikely. Babies with CDH are typically stabilized by medical teams immediately after birth. Though this can be heartbreaking, it is a vital step in giving these children the best chance at survival.
Preparedness looks different for every family, but a few practical steps can help:
Write Down Questions: Emotions can make it easy to forget what you wanted to ask.
Bring Support: Have someone with you for strength and note-taking.
Stay Organized: Keep a folder or notebook for test results, care plans, and future appointments.
Prepare Emotionally: Understand that immediate skin-to-skin contact after delivery may not be possible, and your baby will likely go straight into the care of the medical team.
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 CDH High-Risk Appointments
What is the goal of the first high-risk appointment after a CDH diagnosis? The appointment is designed to assess the severity of the congenital diaphragmatic hernia, introduce treatment options, and begin planning for delivery and postnatal care.
When is congenital diaphragmatic hernia repair performed? Repair is typically performed after birth once the baby is stable. The timing depends on lung development and overall health.
What congenital diaphragmatic hernia treatment options are available before birth? FETO may be offered at select hospitals for severe cases. Otherwise, treatment focuses on close monitoring and preparing for surgical repair after delivery.
How can parents prepare for the appointment? By researching CDH, writing down questions, bringing support, and organizing medical information, families can feel more empowered and less overwhelmed.
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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