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Evan - Athens, Georgia

At 7 weeks gestation, we found out we were having twins. At 18 weeks, we found out we were having a boy and a girl. I could not stop smiling, until the doctor informed us that something was wrong with our son. It appeared that his left arm was missing the radius bone and most likely the thumb on that hand. I was in complete shock. The thought of this happening to him was terrible. After a minute, we were told that there may be something wrong with his heart. I did not care about the arm one bit after that. From that moment on, our greatest concern was his heart. We had 19 weeks to adjust to the fact that his left arm would be different.

Evan and his twin sister Amelia were born in January 2008. Evan was perfect to us (Amelia was, too). He made direct contact with our eyes that day and just stared at us. He was amazing! We noticed that his right hand did not bend back easily and his right thumb looked more like a finger. Later during the hospital stay, Evan had numerous tests, which revealed that he had a series of birth defects that when found together are called VACTERL Association. At 2 months, Evan had open heart surgery to repair a very large hole in his heart (Ventricular Septal Defect). All other problems will be treated separately, including back surgery for a small, out of place vertebrae.

As far as his arm and hands are concerned, Evan is doing almost everything his sister can do. He uses his feet to play with toys and hold up his bottle. He loves to kick his legs hard- a typical boy. We may be looking at the next soccer superstar! At 6 months, he is just starting to lift himself up in the front. I bet he will figure out a way to start scooting around soon. It will be an interesting journey to watch him grow up and figure out how to do things like everyone else. He attends occupational therapy every week to work on picking up objects with his right hand and stretch out his left.

We will be seeing one of the top surgeons for his left arm and hand soon. There are surgeries that can be done to centralize the wrist and create a thumb, but we do not know if this is the route we will take. It will be nice to talk to someone with so much experience before making a decision, though.

I have never tried to hide his arm and hand from anyone. I feel that hiding it would not give me a chance to talk to others about it. Showing it will only educate those who never had to go through this. Every person that meets him is another that can spread the word that being different is OK.

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