Dandy-Walker syndrome (DWS) is a rare group of congenital human brain malformations. There are three subtypes which affect multiple organs to varying degrees, but the fundamental abnormalities involve the cerebellum which controls muscle coordination.
I thought I would share some insight on what both of our youngest children were born with. Gabrielle and Judah were born with Dandy-Walker a rare congenital brain malformation. Gabrielle has the more severe form which is called Dandy-Walker malformation and causes her to have Hydrocephalus. Judah was born with Dandy-walker variant but does not have Hydrocephalus. He does have an endurance and muscle fatigue issues, so he does require a wheelchair for extended periods where we are walking a lot.
We were told by Dr’s that the chances of having 2 children born with this condition are less than 1%. Well, guess what we didn’t beat those odds! We have been through 3 rounds of Genetic testing but they have not been able to find any links. We still currently stay connected and work with Genetics in hopes they find a link but so far they haven’t found anything.
Dandy-Walker has such a vasts array of medical complications and malformations. Both children have been in therapy since birth. They receive Speech, OT, and PT 6 hours per week. They also do aquatic therapy which has been great for nonimpact on their muscles. Early Intervention is the most important to stay on top of things because most treatment comes from therapy. Developmental delays and Intellectual delays affect both children and Judah also has Dyslexia. Both children have an array of medical issues that require many doctors and Dr visits. Gabrielle sees a Neurosurgeon for her shunt and Eye Dr for her vision. Both kids see the same Neurologist and Genetics doctors. Judah also sees a Gastroenterologist because his plumbing doesn’t quite work right.
Homeschool and Activities
I homeschool both kids and use many resources from other licensed professionals.We do modified sports whenever they are offered or available. They play baseball with an association called Miracle League. Judah does Martial Arts with a one on one trainer. Gabrielle started dance this past year but due to so many migraines, she couldn’t continue.
Both kids have issues with anxiety but only Gabrielle takes meds for it because it interferes with her daily living. They are overall doing well and just by looking at them you probably wouldn’t know right away that they have Dandy-Walker. Max and I both agree we would never have it any other way and feel truly blessed 2 have both of them. We are so honored to be their parents. They have already taught us so much about the true meaning of immeasurable love and have such gratitude for the life that has been given to us! I write this to also inform anyone that has been given this diagnoses on an unborn child or newborn. There is so much great info out there and encourage you to educate yourself.
Please feel free to Email me with any questions or if you need support I will be more than happy to assist you or direct you to someone that can.