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Hello
My name is Aimee, I am a 23 year old mother of a beautiful baby boy named
DeVaughn who was born January 2, 2002 with Amniotic Band Syndrome. It affected
his hands as well as his feet. He has a clubfoot in which he had several
castings followed by a surgery to correct it in March. His foot is now looking
great and he has graduated to only having to wear his brace to bed. He is
missing a big toe on his left foot as well two toes on each foot were connected
by tiny bands at birth. However, the doctor who preformed his clubfoot surgery
tied sutchers around the thin bands where they were connected and within 2 days
we were having a "Piggy Party" He now has 10 piggys...ok well maybe really 9,
but DeVaughn thinks that the big toe fairy came and stole it so that's our
little secret. HaHa!
Also his left hand was affected mildly with his middle and ring finger growing together as one. His right hand had his index, middle, and ring fingers twisted and grown together as well as his thumb was connected by a tiny band. Just as with his toes, his foot surgeon also tied a sutcher around the band on his thumb and within 4 days he had another thumb. DeVaughn under went another surgery in June only this time to reconstruct some of his fingers on his hands. They stated they were going to make him another finger from the 2 grown as one on his left hand and they were also going to separate his "index finger" from the mass on his right hand. They weren't able to do all they had expected for our son. They ended up only being able to separate his "ring finger" from the mass on his right hand. His surgeon stated that if he were to do the others he had planned he would lose what he already had. It turns out he was just afraid because of our sons age. But the good news is WE WILL NEVER GIVE UP ON OUR CHILD!!!
I checked into a few places and he got accepted to Shriner's Hospital for Children in Phili, PA. They are going to do everything possible to help our son. We've been very pleased with all the doctors we've met there. It's reassuring to know that he's now going somewhere where they know and understand just what Amniotic Band Syndrome is. My son means the world to me! He is my gift from God! He's not "different" from other children...he is "extra special".
People say about my son not having "normal" hands and feet, but what's normal?? And who wants to be normal anyways?! Everyone has there own characteristics that makes them original. My son will do everything any other child his age will be doing, maybe even better. I can't wait to be there cheering him on as he scores his first touchdown, catches his first baseball, runs down the soccer field kicking a goal, or even so much as plays a musical instrument. He'll know "You can do all you put your mind too"
Children are a blessing, cherish them always!
Thank You.
Aimee
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