Willow's MRI results

So I of course called first thing this morning to see what the missed call was about.  The pediatrician was busy already with patients, so the nurse pulled her file and told me this:

there is a significant loss of white matter,
there is no evidence of pressure yet from the fluid
She was born with hydrocephalus
we have to call Early On to schedule an appt. with them
They will have the neurosurgeon review MRI as well to make sure surgery is not needed at this time
We will be referred to a pediatric neuro developmental specialist

brief interruption the pediatrician just called!! So this is what she is saying:
Willow's ventricles are enlarged and taking up space but not causing pressure and the reason there is no pressure is that her brain is not developing as it should.  Both of her hemispheres and the corpus colostrum (the layer in the middle that connects the two sides) are smaller and thinner than should be.  So there is excess fluid in her brain but because brain is smaller than it should be there is no pressure.  When I asked her how this could have happened (referencing the infection I had in December) she said it would have had to happen in the first trimester of pregnancy.  It is not necessarily genetic either (as we do have brain issues that run in my husbands family).  We will be referred to the neuro-developmental specialist who will help us with therapies to  stimulate what brain she does have.  When I asked what types of delays we can expect, she said fairly global.  Though we do not want to go into it saying she can't do this, as she might be able to, but it will be an all over delay.

So in short we have a special little girl on our hands.

We have caught this extremely early, so there may be times when we have to sit and wait before a doctor will see us and work with her.  But this will be a daily process of working with her.  Right now we can just sit and enjoy her smile.


Turtle65 said…
Awww, what a special little girl you have! The doctor had good advice in that never say she can't or won't be able to do things. We followed that advice for Brent and he continues to amaze me! Hang in there, sweetie!
Chel said…
I'm so glad you caught this early. Sounds like two more weeks of knowing wouldn't have made a difference. I guarantee Willow will continue to be a gift and surprise you. I'm so sorry you all have to go through this though. Every baby deserves to be perfect.
Jodi said…
I am so sorry Donna. Thankfully it was caught early enough. Many hugs and prayers.
Meg said…
Donna - I wanted you to know that we called Randy, Bill's brother, whose 35 year old son has hydrocephalus, and he would be looking for your e-mail, if you want to contact him. I think Ashley will, since she sent me an e-mail to get his address. Anyhow, he is aware of the situation.

We are so sorry about this - it is so hard to deal with, we know. But, they can do amazing things now with therapy. They never thought Josh would do much of anything, yet he taught himself to read and is very musical, performing at nursing homes and has made 3 CDs. Love is the main ingredient, I think, and you have plenty of that. Best wishes and if we can do anything, please let us know.

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