kellyliz82
01-31-2008, 03:23 PM
Jackson was born 2/5/03. He was born with clubfoot and a cleft lip and palate. He has Gorlin syndrome, which runs in my husband's family. This syndrome brought on the clefting and may cause basal cell skin cancers later in life. For his clubfoot he got his first cast at three weeks old. He would wear a cast for a week, then they would turn his foot as far as it would allow and recast. He went through 11 casts and a tenotomy (cutting the achilles tendon). He wore a Dennis Brown Bar (shoes with a bar connecting so that his foot did not turn back in) for 23 hours a day to hold the correction until his bones hardened. He had his cleft repair done at two months old. We love out plastic surgeon. It was at a cleft check up that he felt Jackson had a type of craniosynostosis. Talk about being blind sided. Macrocephaly is a part of Gorlin syndrome (DH has a big noggin, as does most of his family) so Jackson's larger head never occured to me as a problem. After x-rays and scans we found out it was sagittal synostosis. I was devestated, as I felt my little man had gone through enough. At eight months old Jackson had his cranio surgery with the same doctor who did his cleft repair. He did wonderful, his recovery was quick and uneventful. He was able to reduce the time of wearing his corrective shoes to when he was asleep so that he could learn to walk. He got them off for good at two years old. Jackson is now five years old and has not had any problems. He has a small bump on each side of his forehead where dissolvable screws were. It is scar tissue that formed on the head of each screw. We have opted not to go through another surgery to remove this tissue. That's Jackson's story.