Feed your faith and your fears will starve to death.

Sunday, March 7, 2010

{MRI results for Faith}

I have contemplated how and when I wanted to make this information public. The news was not ideal, but what we expected, so no surprises. She does have Agenesis of the Corpus Callossum. Basically she is completely missing the connective tissue between her left and right hemispheres. This tissue consists of several nerves that allow the left and right hemispheres to communicate to each other. The movie Rain Man was based on a true story of a man who was completely missing this part of his brain. (He also had another issue that Faith does not.) We believe she will be a high functioning person with this disability, but it is so rare there is not much information out there. We are meeting with a neurologist and an eye specialist. Most children need cataract surgery to keep their eyesight.

On a positive note, our pediatrician was completely surprised by this diagnosis. She seems very normal. I think he expected the results to come back as her being completely fine. This is a very positive sign. Some people go into adulthood not even knowing they have this disability until they have an accident, or need an MRI for other reasons, only then to discover this. So the spectrum is very wide with her outcome.

It is interesting how I have processed this information. Going into her adoption we were told she would need brain surgery. Within a few weeks we had updated information that let us know she didn't need surgery and seemed completely normal. We also knew she had a CT scan in China that diagnosed her with Agenesis of the Corpus Callossum. Since we met her, every single person that also met her confirmed their belief that she seemed normal, and wondered why she was considered special needs.

I guess in the back of my mind I quietly hoped that the CT scan in China was a mistake, that somehow miraculously this perfect little girl slipped through the cracks of the special needs program to make it to us.

Now that we know the diagnosis is valid, I feel such a strong need to protect her. I don't want her labeled. I have even found myself looking at her actions differently, thinking " Is that normal? What is normal? If I am doing it, is anyone else? Will she be under a microscope, others being extra sensitive to her actions, or reactions because they know?" This has been my only real fear of her diagnosis.

Of course we are sad, no one wants their child to struggle or suffer. It would have been nice to hear that she is completely health. Diagnosis or not we just adore her and she is perfect to us. We are excited that she is here with us, and that we can give her the best chance for a normal life that treatment can offer. We are prepared and happy and blessed that she is a part of our lives.

Thanks for your continued support, we love our support system and are grateful for you all.


The Corpus Callosum is a bundle of nerves in the brain that connects and sends messages between the two sides of the brain. "Corpus" means a body or structure while "callosum" means a bridge. "Agenesis" means without development.

The above picture shows the Corpus Callossum. In the picture on the upper left the Corpus Callossum is completely missing, ( this is Faith's diagnosis) The upper right has a partial. The lower left is a normal MRI, and the lower right is a thin Corpus Callossum.