Dandy-Walker Malformation

On January 20, 2011, we learned that our boy has Dandy-Walker Malformation. Dr. C. explained to us that the cerebellum is shaped like a figure 8. A part of the brain called the vermis connects the left and right sides of the cerebellum. It is responsible for stability (sitting, standing, walking) and movement. Our son's is missing. Also characteristic of DW is a cyst in the 4th ventricle of the brain. He has a cyst that is in communication with the brain (the brain believes the cyst to be part of the brain now..it's not removable). He promised us that our baby would be very sick. He said we will never walk, talk, feed himself, play on the playground, etc. He said these children have no sense of space and can't control their movements. I asked about cognition. He said he would most likely be like a 1 to 2 year old his entire life. Dr. C. touched my hand and said, "There is nothing you did to cause this. It just happens, and often we never know why."

Do I even need to mention the devastation that Joe and I were feeling?

Many parents in this situation, I have learned, are encouraged to terminate. And, many do. Options were presented to us; I was numb.

I was encouraged to have an amniocentesis performed to determine if there were any chromosomal abnormalities present as well. His survival was questionable, and the doctors felt having this information would give us a better idea of the overall picture. I NEVER thought I would have an amnio performed. Joe held my hand the entire time. I couldn't bear to watch. It was fine; uncomfortable, but fine. Like I said before, I was numb anyway (emotionally). We were told the FISH results would be back in 24-48 hours. The full battery of testing and the DNA micro-array would take a week to 10 days.

We spoke with our genetic counselor for hours that day. At some point she mentioned the possibility of us consulting with a pediatric neurologist since he/she is the doctor that works with DW children. Those of you who know me know that I often don't speak up. Well, I have learned to do so. I asked if that could be arranged. She went to make a phone call. When she returned, she told us we would be meeting with Dr. Painter on Monday. I didn't know this then, but I know it now; he is an angel. God sent him to us.


We finally got home from the hospital around 7:00 that evening. Thankfully my amazing sister was able to step in and care for Ally. It felt so good to hold my little girl that night. My whole world had been crushed. I never felt so desperate and helpless. But, holding Ally gave me strength.

Again, I probably don't need to mention what the next three days were like. I didn't know what sleep was, I couldn't eat, I thought I was going to lose my mind. I spent hours on the computer researching Dandy Walker Malformation, Variant, Syndrome, Complex, etc. I couldn't believe this was now my world.