I am starting a blog to have something to share with our first born Tommy. My pregnancy has been what seems like a never-ending rollercoaster. We found out on May 29,2009 that I was expecting our first child. Tommy and I were so excited! We couldn't wait to tell everyone the good news. I had always wanted to be a mommy and I couldn't wait to start this new adventure with Tommy.
The first three months were pretty uneventful. We did everything by the book because I wanted to know that if something happened that it wouldn't be because of anything that I did. On September 10,2009 we had our appointment with our OB to have an ultrasound to find out the sex of our baby (we already knew it was a boy because we went to First Glimpse). After the ultrasound we waited in a room for the doctor which was taking longer than usual. Once he came in the room he told us that he had seen extra fluid in the brain in his cisterna magna. He told us he was not sure what it was because he had never seen this before. He then told us he wanted us to go see a perinatologist to have a more in-depth ultrasound.
He got us in to see the perinatologist within the hour. I was not sure what to think at first but since he was able to get us in so quickly I knew that it was serious. Once we got to his office we had another ultrasound that seemed to last hours. They measured and checked everything inside of our baby. Once they were finished they sent us to a room to wait for the doctor.
When he came in the room he began by telling us that what our OB had seen was a sign that something somewhere else was wrong. He then proceeded to tell us that our baby has Dandy Walker. Tommy and I had never heard of this before. He then told us that Dandy Walker is a brain malformation that affects the cerebellum and the fluid filled spaces around it.
Dandy Walker is very rare. It occurs in about 1 in every 5,000 births and the severity differs from not being affected to being severly disabled. There is no way to tell how severe he will be until he reaches each developmental milestone. Dandy Walker children are usually delayed in there developments and require many different types of therapies.
After explaining to us what DW is he told us that chances were that there could be other abnormalities and that our baby may not make it. He then told us we had the option of abortion (which was never an option to us). I would not and will not ever give up on our baby!!
He then did an amnio to check for genetic abnormalities. I don't really remember how it felt because I was shaking so bad from being in shock. He did the FISH test which told us within 3 days whether or not he had Downs, trisomy 13, or trisomy 18. If he had any of these the doctor told us he would not survive. We got the results back that next Monday(after the longest weekend of our lives) and were told that the tests came back NEGATIVE!!!! His survival rate had increased dramatically from what we were told. We then had to wait until the next Monday to get the rest of the amnio results back to see if there were any other genetic disorders. Those test results were also negative!!
We then began to become aware of this disease that suddenly and quickly changed our lives within a matter of minutes.