Reputable Medical Resources
Your medical team should provide you with information specific to your case and recommend additional testing and imaging as needed. If they feel your situation requires more specialized care, they should refer you to a team better equipped to support you throughout your pregnancy.
If you turn to the internet for information, keep in mind that while it can be a valuable resource, it’s also full of misinformation. Be sure to rely on reputable sources, and remember:
CDH exists on a spectrum — every case is different.
This was no one’s fault — CDH is not something you caused.
Each family dynamic is unique — trust yourself to make the best decisions for you and your baby based on the information available to you at the time.
Below are some vetted resources to help guide you. While this list is not exhaustive, it’s a great place to start.
Children’s Hospital of Philadelphia or CHOP
Children's Memorial Hermann Hospital (aka UTHealth or Comprehensive Center for CDH Care)
DHREAMS (Columbia University)
UCSF Benioff Children’s Hospital - this is a link to free interactive book for patient’s to download on their iPads
Genetic and Rare Disease Information Center (part of the NIH)
