On Wednesday, Jul y 19th I was full of excitement and anticipation. I was so happy to see my beautiful baby boy on the ultrasound again. I thought this was going to be an awesome day followed by a routine check up with my OB-GYN.
The first part of the ultrasound went smoothly. Then the ultrasound tech said she was going to leave for a minute and wanted me to walk around some so she could get a better look at the baby's umbilical cord. On her return she quickly found what she was looking for. Then she told me that the baby is showing fluid in the back of his brain and that the fluid pocket appeared to be a cyst.
I could immediately see out of the corner of my eye that my mom was already crying and as soon as I got off the table I started bawling my eyes out. My husband stayed strong. At the moment we didn't have enough information. They sent as back to wait in the lobby to see in the doctor. The wait was terrible and I was crying non stop in front of all these strangers in the waiting room.
Once we finally saw the doctor, he checked me out a little bit, asked if I had any concerns and then we went to go sit in his office to talk further about the baby's brain. The doctor explained to us that the baby was showing a Dandy Walker Malformation. Something I had never heard of before. He didn't go into much detail but immediately got me an appointment with the fetal medicine doctor that same day.
The whole time in between the two appointments I was googling non stop. But I had totally skipped over the fact that my doctor said it was a Dandy Walker. I was looking up "cyst on baby's brain", which what came up was pretty positive. Mostly that the cyst goes away within two to four weeks.
So upon arrival to the MFM doctor I was hopefully. After another long ultrasound, the doctor came in to speak to us again. The first thing he asked me was what had I googled and found. I explained to him what I had looked up and read. He was quick to tell me this was not what all he thought it was. He explained to me that my baby has a posterior fossa cyst and they are unable to see if he has his cerebellum vermis. They believe his cerebellum vermis to be missing and that it never formed. These two things together is what is called Dandy Walker Malformation. Other than the Dandy Walker though my son was perfectly healthy and did not seem to have any other problems.
The doctor went on to explain to me that my son could be a vegetable or just have some minor delays. He explained that it was hard to see exactly what was going on with him till he is born and has an MRI on his brain. The doctor stayed with us for 3 hours answering many questions. They also preformed an amniocentesis to test for chromosomal abnormalities and neural tube defect.
Leaving the office I felt so heartbroken. Never has something like this happened tome that was this out of my control.
After research I had learned a lot of medical things about Dandy Walker but could not find any reports or pictures of children with this. So I searched Dandy Walker on Facebook and came across a group for parents of these children. I joined and posted what I had found out about my baby. The out poor of support was unreal. So many beautiful children. Some more delayed than other and some that were wheel chair bound. It was a wide range from mild to severe. But it gave me so much hope. This baby has so much love and support around him. I know there will be so many more questions along the way but I am so hopefully my little boy will be fine and be able to live a full life
