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Hello, I am new to the group. My baby girl was diagnosed with CDH on my 16w ultrasound and I am seeking support and advice on what to expect, what facilities to research, basically any information you can send my way. Thank you in advance, I’m so emotional, but I’m trying to understand it all.
We are so glad you found us. Unfortunately, our forums are quiet, not much activity anymore. They are great for searching and reading things, but most of our parents post over on social media in our closed main support group on Facebook, https://www.facebook.com/groups/cdhsupport. You will get great feedback there and meet so many new families. Starting March 27th at 9pm EST I will be doing live chats in the group where we can talk too.
What hospitals have you visited? I would start with your big children's hospitals and facilities with ECMO, they are more likely to have taken care of a CDH baby. We will be putting a Parent Reference Guide in your care package we send out this weekend, but you can also look at it on the website, https://cdhi.org/wp-content/uploads/...ence-Guide.pdf. Inside is a list of questions to ask facilities when you visit. Finding that team you feel comfortable with and one that will fight for your baby is the first place to start.