Dandy-Walker Syndrome
Have you heard of it? Not many people have. 1 in 2,500 babies are born with this syndrome. Dandy-Walker Syndrome is a malformation that involves a part of the brain called the cerebellum and the fluid filled spaces around it. The cerebellum (an area at the back of the brain that controls movement, behavior, and awareness) and the fluid-filled spaces around it. There is also a
cyst formation near the internal base of the skull. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. Most of the signs and symptoms of Dandy-Walker Syndrome are due to a buildup of cerebrospinal fluid in the head, a condition known as hydrocephalus. The effect of Dandy-Walker Syndrome on intellectual development is variable, with some children having normal cognition and others never achieving normal intellectual development even when the excess fluid buildup is treated early and correctly. Unfortunately, so little is known about Dandy-Walker that doctors cannot give parents much information about this syndrome in regards to their little ones. Parents of course yearn to know if their baby will survive. Yes, we wondered. We wondered if we would hear our babies cry at birth, if we would feel their breath against our necks, if we would be able to bring them home from the hospital. And those are just the first few questions that we so desperately wanted to know. No one could give us the answers to these questions. Termination is usually offered as an option and the prognosis given is of much uncertainty. A 'wait and see' prognosis. Rick and I have an amazing daughter, Abby, who has Dandy-Walker Syndrome. A problem was discovered with Abby's brain. The wind was knocked out of us. Steadfast in our faith to grow and love our little baby, we persevered and cherished every kick throughout our pregnancy. Ecstacy to our souls as we heard Abby's first cries on her birthday! Fastforward through a whirlwind journey thus far in our glorious world and 5 surgeries conquered, Abby is a happy, boisterous toddler! We love her so very much! She is amazing her doctors and therapists all the time! They are cautiously optimistic about her future. She is a warrior princess who is taking this world by storm! For more detailed information about Dandy-Walker Syndrome, please visit www.dandywalkertexas.org
