Originally posted Friday, June 4, 2010
Jack was born in May 2005 with a craniofacial syndrome called Apert syndrome. The main characteristics of Apert syndrome are craniosynostosis (early closure of the bones of the skull which can interfere with normal brain growth), retruded midface (middle part of the face--the nasal area--grows at 1/3 the rate of the rest of the face giving the appearance of bulging eyes and causing narrow nasal passages and breathing issues), and fusion of the fingers and toes at birth.
Jack has had complications and has not followed the "usual" path for a child born with this syndrome. Jack has had 13 separate surgeries which each involved multiple procedures. Two of the surgeries were to create separate fingers and toes. Most of the surgeries involved eliminating pressure on his brain to prevent brain damage. The end results are great.
Jack has 10 separated fingers and 10 separated toes. He does not use his hands like someone born with separated fingers and toes because his body did not develop in the same way but he is adapting as he goes. He has not yet mastered the activities that other 5 year olds can do with their hands but he will in his own way.
All the brain surgeries have prevented excess pressure on his brain but somewhere along the way Jack developed optic nerve atrophy and cortical visual impairment. His eyes themselves work fine but the nerves are damaged so the image does not get to the brain. He can only perceive the presence of light with his left eye and his right eye is estimated to have vision of 20/320 (Jack has to be 16 times closer to an object than most people in order to see it. What someone else sees at 320 feet, Jack will see at a distance of 20 feet.)
Jack has not yet had surgery to correct his retruded midface. That is a major surgery that he will be having sometime in the next few years. In the meantime, he has very small nasal passages that are very reactive so he has a near constant runny nose. Also, his eyes appear to bulge because of his shallow eye sockets.
Because of these birth differences, the surgeries, complications, and hospitalizations, Jack is delayed in speech, fine motor (small work with the hands), gross motor (things like jumping) abilities, and social skills. Although he does not always pay attention, he understands the things other 5 year old children understand.
Nearly since birth, we started Jack in therapy believing that he needed to be pushed early and hard to help him to develop to his best potential. His Dad and I were making the decisions we honestly believed were best for Jack. It was only last year when Jack was almost four years old that we realized that we were robbing Jack of his childhood. Everyday and every thing was work work work and Jack was withdrawing from people. He had learned that being with people meant being forced through things he did not want to do and constantly being asked for more more more with little time for what might interest him.
Last summer was the first time since he was about two or three months old that he did not have therapy. We relaxed and tried to learn to play like Jack with the things that interest him and his development truly took off! He really began to talk. He began to actually enjoy spending time with close family.
Jack continues to develop at his own pace and we are all learning as we go. What a journey!