New/ Daughter with hydrocephalus/dandy walker
Hello, I'm the mother of a daughter who is a month away from 22 years of age. She was born with hydrocephalus caused by a dandy walker malformation. She also has Klippel–Feil syndrome, (fused vertebrae in her neck). She also had a small cleft palate at birth, which was repaired. She has scoliosis of her spine.
She had a vp shunt inserted the day of her birth, (her head was huge with a large cyst in the back). She has been very blessed in that she has only had two shunt revisions. Her last shunt is now 11 years old. She has a severe hearing loss in one ear, profound in the other. She is developmentally much like a baby. She is unable to walk but she can sit and she can scoot around. She is happy most of the time, but has suffered from a lot of ear issues and does have chronic constipation which causes her considerable pain.
She does not talk and I have often wondered if her shunt causes her problems that she can not communicate.
I'm interested in talking with others and sharing who have similar circumstances.