Baby has an encephalocele. Anyone have hope?

[FirstTryGal]

We were told this week at our routine 20 week scan that our precious little baby boy has a hole in his skull. There is a sac of fluid protruding from the back of his head where his skull should have closed. The doctor gave us a pretty grim prognosis with 40% chance of losing baby, and if he survives, 80% chance he will have mental disabilities. My OH and I are terrified, as this is our first, and have no idea how to be parents, let alone to a special needs child. Does anyone have any experience with this diagnosis? We are praying and trusting that God can do anything, including healing that little head, but the doctor said it never heals itself. We will not terminate under any circumstance, but I am finding it hard to be calm and not worry!

 

[momto3kiddies]

i really dont have any personal information about it but did find these 2 websites that you may find helpful. They both consist of positive stores with their little ones who had the same thing. Im sorry I couldnt help more but I, like you believe that God is great and can heal...you all will be in my prayers

https://www.mommiesofmiracles.com/encephalocele/

https://www.mommywantsvodka.com/tag/encephalocele/page/3/

 

[Medzi]

I am so sorry you are going through this - it is hard not to worry. I truly hope everything turns out to be ok with your little guy! I am sorry I don't have any experience but I hope those website above help.

 

[Moti]

I'm sorry, I don't have any experience with this...just want to offer my support any prayers....

 

[Happy2BeMommy]

I just saw this article:

https://www.huffingtonpost.com/2013...ofacial-surgery_n_2575625.html?ncid=webmail50

I hope it gives you some hope! I'll be thinking of you.

 

[needshelp]

I just had my 12 week scan....doc told me that this is defn a possibility as there is a hole in the back of our babies skull.... it's causing fluid to surround the baby....trying to keep focused and positive...how are you doing since? looking for any bit of hope! originally they told me it was downs or trisomy

 

[MrsBroodyPant]

Xxxxxxx

 

[Dream.dream]

https://childrenshospitalblog.org/our-patients-stories-dominics-craniofacial-surgery/

Hope this helps