Just before my 40th birthday I found that I was with child. It was quite a surprise since Ethen was 18 and Delaney was 16. However, Rick was thrilled. His sister's son was one and a half years old and it would be wonderful for Alex to have a cousin so close to his age.

Thomas "Seth" Jefferson (there are three living Thomas Jefferson's in the family at this time) was born just after midnight on December 31, 1990. Of course no one at our hospital had ever seen the syndrome. He had strong vital signs and was able to nurse. Seth was alert from birth. He looked all around the room with his big eyes. Finally a diagnosis was arrived at and we were sent to Childrens' Hospital in St. Louis.

Seth has only had one cranial surgery. A mid-face has been suggested, however after soul searching and research we have decided to wait until he is older, unless a medical need arises. Having his tonsils and adenoids removed when he was three and a half did wonders for his breathing at night. He still has some trouble breathing when he has a cold or is suffering from allergies.

His hands are a type III, the most severe and complicated type. He has had over nine procedures to date and will require several more. Three of the procedures were pedicle groin flaps. He seemed to tolerate the procedure fairly well. Each time he was mobile within a week. The only real complication was a yeast infection that required removing the bandages daily, applying an ointment and bandaging. It's hard to keep an area near the groin dry when a child is still wearing a diaper.

Seth is in first grade and doing very well. He is reading at first grade level, has excellent math skills and loves recess. His interests include collecting information about dinosaurs, playing with his trains, drawing highway signs, and watching the Bull's games with his sister. He has a good ear for music and dreamsn of being old enough to sing in the church choir.

Dori and Rick Jefferson
83 Pine Lane
Carbondale, IL 62966
(618) 529-2521
[email protected]