Bilateral CDH survivors

[Anjelica Flores]

Hi I'm trying to find any bilateral cdh survivors, I'm expecting my first child and she has been diagnosed with bilateral cdh. I also want to know for the cherubs who were / are diagnosed with a severe case of cdh what are your living conditions like?

[Chris and TracyMeats]

Hi Anjelica, welcome to CHERUBS. I am so sorry you are on this journey with CDH. Having bilateral CDH, it is harder for them to overcome. We do have survivors out there. Where are you doctoring at? Are you at a facility very experienced in CDH care? Is the diagnosis of a bilateral CDH coming after a fetal MRI or just the ultrasounds?

It is so hard to compare two cherubs, for they are truly like snowflakes when it comes to their care. Each case has to be handled differently, for what works for one, will not work for the next. I have seen babies with very severe cases of CDH have little to no lasting complications and I have seen babies with a mild case of CDH, struggle to survive and have lasting health complications. Babies born with CDH can have an array of health complications. Have you checked out our website too, www.cherubs-cdh.org, there is more info. to read there too. We do have a facebook page that is more active you could post questions to, for sometimes our forums are not as active, https://www.facebook.com/cdhsupport/.

[LHenderson]

Hi! I am sorry that you at walking this journey. I am praying for you.

[eglopez]

Prayers for you, your baby, and your family. Thankfully, mine was only on the left and not severe. I hope you get some answers!

[AmandaPlakholm]

Welcome Anjelica, I'm sorry your daughter has been diagnosed with CDH. I have been following a bilateral CDH'ERS journey on FB and she is thriving, Tracy is right though and ever case is different and the doctors wont know everything until she is born. Prayers and strength for you.