Rick and I have two amazing daughters, Grace and Abby. Abby was born with Dandy-Walker Syndrome. A problem was discovered with Abby's brain at our 16 week sonogram. The wind was knocked out of us. Words came in and out of clarity as the doctors spoke--missing brain, stillborn, termination, prognosis unknown. Termination was not an option for us. Steadfast in our faith to grow and love our little baby, we persevered and cherished every kick throughout pregnancy. Ecstasy to our souls when we heard Abby's first cries on her birth day! Abby was born full term and confirmed Dandy-Walker, occipital encephalocele, two mild heart defects and cleft palate needing a short NICU stay. She developed hydrocephalus requiring a VP shunt within 3 weeks of birth. Abby has been in and out of the hospital on numerous occasions, has endured two brain surgeries, surgery to repair her cleft palate, battled ear and GI issues, and although she is delayed in some areas she has made remarkable progress. She has a myriad of incredible doctors and therapists. They are cautiously optimistic about her future, but she keeps on amazing them. Fast forward through a whirlwind of her first 18 months in our glorious world and 5 surgeries conquered, Abby is a smiling, happy, boisterous toddler. What’s important is Abby does have a wonderful quality of life. She may have to work a bit harder to accomplish some things than most, but she’s a happy well adjusted toddler. She is a light in so many lives. Abby and her family’s love for each other is inspiring. Abby has a ball squealing like a monkey, being outside and playing peek-a-boo with her big sister. She is a warrior princess who is taking this world by storm! I’m sure someday she’ll thank us for rallying together and fighting for her life. She is surely a life worth saving!
David and I have a son, Dylan, who has Dandy-Walker Syndrome. Abnormalities with his head and brain were discovered at our 20 week ultrasound. We were told what the doctor saw was usually not compatible with life and we were offered termination. We were also told if he made it to birth there was a good chance he could be stillborn. We just took it one day at a time and we were determined to try to keep a positive outlook the remainder of the pregnancy.
Today, Dylan is a happy, highly intelligent 24 month old who loves cars, balls and Elmo. His biggest struggle has been his gross motor skills; he didn't crawl until he was 15 months old, but we are excited to say he began walking when he was 22 months old! He has had eight surgeries so far and is such a little trooper. We have always referred to him as an abnormally happy baby. We are so lucky to be his parents and he brings us so much joy!
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. Some 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.
Hope prevails! We need your help!