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James, Pierre, South Dakota

James was born a healthy 7 pound boy on July 11, 2006. He is our first and only child. I had no idea his hands were deformed until my husband handed him to me, and showed me. I was devastated, and thought I had done something wrong to make an imperfect baby.

We sought out a genetic counselor who comes to our area once a year (we live basically in the middle of nowhere), and were told this was an isolated genetic defect, and that our future children should be fine, although James’ children would have a 50% chance of having a similar defect.

We were never really given an answer to why James’ hands were different – I don’t even think there is a specific name for what he has, besides syndactyly and adactyly. On his left hand he has 3 fingers and a thumb – two of the fingers were fused together. On his right hand, his arm is a little shorter, and he has two small fused fingers and a modified thumb. We were told he was very fortunate to have two thumbs.

Our physician recommended the Shriner’s hospital to us, and James has already had his first surgery this June at 11 months. We opted to operate on both hands at once to get the major stuff out of the way and save a trip (the hospital is 9 hours away from our home). For this surgery he had his two fingers on his left hand separated, and the web space was deepend on his right hand between the thumb and two fingers. Our little man made it through with flying colors. I definitely think we took his surgery harder than he did. About 5 hours after his surgery he was already back to normal and banging his casts around like toys.

We will be headed back to the Shriners this fall for more x-rays and to decide what to do next. I feel pretty comfortable with the care he receives there. Everyone there is so wonderful, and we could never thank them enough. James will probably have to have several more surgeries to make his hands as useful to him as possible. I don’t know exactly what course we are going to go yet since he is still so small and growing, but we will do whatever we can when the time is right.

Our state also offers free occupational therapy services for James, and he meets with his OT once a week. Our goal with the OT is to help him use his hands to the best of his abilities and to make sure he is on track developmentally – all of which he is.

James is thriving and is so motivated to explore his world. He loves bathtime and playing with cars and taking walks to Zesto for an ice cream (he loves ice cream) and playing with the kids at his daycare. He is able to pick up items with both hands, and feeds himself with both hands (he really doesn’t have a preference, even though his left hand is more of a traditional hand than his right). I am constantly amazed at the ways he adapts to using what he has – and then I remember that he doesn’t know any different, so what I consider “adapting” is really just “doing” for him.

Every day we get to spend with him is amazing, and we couldn’t ask for more. I am lucky to be his mom. As James grows up, my wish for him is to be happy and be treated just like everyone else. I don’t ever want him to feel bad about his hands, because they don’t make him any less of a person. I don’t see him as being disabled because he can do so much, and is so normal.

Children are attracted to James, and when they notice his hands, they usually ask what happened to him. I just tell them that that is the way God made him, and then I tell them about how he uses his hands to do everything that they can do like play with toys and eat and clap and hug. James’ hands have never prevented him from doing anything, and I don’t think they ever will. I find that the parents of these children usually become embarrassed by their child’s innocent questions, and try to get them to be quiet. This frustrates me because children have a natural curiosity, and by answering their questions as honestly as I can, they can see that a child with a disability is really just like they are, and will in turn treat them the same as they would a non-disabled child. I don’t ever want people to feel sorry for him – because he doesn’t need sympathy, just compassion and understanding.

To communicate with James, send an email to his parents.

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