I Have Holt-oram Syndrome
Hi my name is Amy and I am 33 years old and mother of 3. I was diagnosed with HOS 9 years ago when i was pregnant with my twins. Until that point I had never heard of it and had no idea why I was different from everyone else. I had an asd repair when i was 17 and i do not have any thumbs. My right hand was against my forearm when i was born so they did the best they could to straighten it. I also have sloped shoulders and very limited rotation of my arms. My twins both have HOS also. My daughter had asd and vsd repaired when she was 3 months old. Her one arm is shorter than the other and both her hands have been affected. Both thumbs have an extra bone in them and one is located next to her fingers. My son also had asd and vsd repairs done when he was 5 years old. His hands look fine but he is very weak with his grip. My oldest son is 12 and he also was a twin, we unfortunately lost him, I believe that he may have also had HOS because i noticed his hand were not quite right but the doctors couldnt give me and information if it was related to me or not. We lost him for other complications not due to HOS.
Life has had its ups and downs but I have always wondered if there was others out there like me. Recently I began to get therapy since my daughter is reaching an age where I know kids are going to be rough on her. My desire is to learn to be comfortable in my own skin and not worry about people judging me. I don't want to be a hypocrite and tell her everything is going to be fine and her pull herself away from people like I have. I'm so happy that I came across this site and so thrilled to see others I can talk to and they will be able to understand what life is like.
I look forward to the start of new friendships
