Special Blessings is a local group for families with kids who have limb differences. “Limb difference” is the widely accepted term for what Patrick has. The term is pretty generic, and is inclusive of both arm and leg differences; most groups are open to those with congenital (birth) differences and those who have amputations later on. Special Blessings was founded by a woman who is missing part of her right arm; despite her “difference” she has gone on to do many active things.
The group had a Pizza Party this saturday and it was our first time meeting them. Patrick made a new friend, a little boy who lives in our city and is 2 months older than him. Elliott had a good time eating pizza and playing with the games and rides. Patrick had a good time…just hanging out.
The doctors originally thought that Patrick’s arm was shortened early on in the pregnancy because of a blood clot. However, once he was born, a neonatalogist who saw him said that what he has appears to be classic ABS, or Amniotic Banding Syndrome. This happens when strands of the amniotic sac wrap around and constrict body parts. The resulting defects depend on where the strands wrap, how late in development they occur, and how tight they are. If the bands wrap around vital organs or blood vessels, they can result in death. It’s estimated that ABS occurs in 1 out of every 1,000 to 10,000 live births. The cause for it is unknown, and it is really random chance, not anything related to our genetics or anything we did during the pregnancy.
Patrick’s band wrapped very early on, probably right around the time we found out we were expecting. You’ll see in pictures there is a tiny circular-ish nubbin at the end of his arm; this is actually his hand. There are 4 fingers and a thumb, but it is very small and does not contain any bones – it looks like the hand of a fetus. I’m not sure if it will grow as he grows or if it will stay that tiny forever. His elbow is normal, so he should have a lot of function because of that. Every little bit helps, and having an elbow differentiates him from upper arm differences; Patrick is considered an LBE, or “left (arm) below elbow.” Because the results from ABS are very unique from person to person, the best way for us to find other people with similar arms is to seek out other LBE people.
As of right now, we are most likely not pursuing any prosthetic arms for him. This is a hotly-debated topic in the limb difference circles, with strong opinions on either side. When Patrick is a little older, if he appears to need any adaptive devices for specific tasks or expresses a desire to have a prosthetic arm, we will look into it. Regardless of prosthetics or not, he will be able to do whatever he wants, one way or another.