His diagnoses is Edwards Syndrome including congenital cardiac malformation with large intracardiac defect, cortical blindness, and severe delay in the neuro-psychological development. The August report says the following:
Vincent was extremely calm during the whole visit. He sleeps in a small room, together with three other children with disabilities. He sleeps in a crib. He spends most of his time in his bed, being periodically put in a chaise lounge or in a car basket. He cannot sit upright, either independently, as well as with support. His position in the lounger/car seat is semi-recumbent.
Vincent predominantly uses his right hand and his body is almost constantly turned slightly to the right. He can turn from his back to one side and vice versa, he cannot turn on his stomach. When placed on his stomach, he cannot raise his head. Vincent is basically blind, according to the diagnosis and by a specialist, although the staff has doubts because the child often reacts to light. During my visit, when displaying and attempting to stimulate a reaction with a ball of light, no such reaction was observed.
Vincent showed interest in the new toys and especially in the noisy book which he grabbed with his right hand, held for a while and even waved it with his hand. As the teacher shared, he grabs like a crab, with pincers. The ball turned out to be too big for him to hold in one hand. Although the book was kind of prickly, Vincent did not react in any way, not even by pulling away.
A sharp noise does not startle Vincent, this was also evident from the sharp squealing from the side of the ball. He listens when there is music, and can show a slight liveliness/activity. He does not react to his name. He likes to be paid attention to, to be spoken to gently and to be hugged. He does not mind being touched … even from a stranger. Vincent’s entire care must be provided for by an adult. He is fed with a tube, being on 5 feedings per day. He doesn’t get angry or protest when changing or bathing. His sleep is peaceful.
From what I saw Vincent would be much better in a family environment. In the “home”, he mostly spends his time in his bed doing nothing and getting no attention. Every child deserves attention and love and stimulation. I really hope that this sweet boy will find his forever family soon!
