This morning Patrick had his first appointment with Shriners Hospital. They are located in the hospital system where I work, so it’s pretty convenient to visit. They exceeded my wildest expectations and treated us like royalty. We actually have to go back because they usually do all their appointments (nurse, dr, occupational therapy, prosthetist, etc) in one day because most patients are out of towners. We were there for 2 hours and hadn’t met with OT yet, so we opted to come back another day for that after seeing the dr.
1. They are the nicest people – EVER. Everyone was so kind and genuine. They gave PJ snacks and a toy to keep and had a coffee/tea/cocoa station in the hallway for us.
2. We found out that PJ doesn’t have ABS (amniotic banding syndrome). When I was pregnant, they said it was either a blood clot around 5 weeks gestation that kept his arm from developing normally or ABS, which is where you get these weird strings from your amniotic sac that literally cut off circulation and limbs. After he was born, the neonatalogist said it was classic ABS and supposedly sent my placenta off to pathology and I never heard a word about it ever again. They also offered us nothing for pediatric OT or orthopedic help, even when we asked for it. “Go to Shriners,” they said – at that time the nearest one was in Los Angeles.
Today, the Dr – who sees this all the time- said that it is a congenital vascular development issue, probably originating from the vessels in the neck when they were forming. Something didn’t go quite right with it and his arm wasn’t able to develop typically. Like ABS, this sort of vascular issue has no specific cause; it’s not genetic, and there is no “cure” – they basically don’t know why it happens. It doesn’t really matter what caused it, because either way there isn’t a way to “fix” or prevent it.
Part of me doesn’t really care what caused it, but the curious scientific part of me wants to know all the details. I feel kinda conflicted that we now have an answer that’s really more of a non-answer.
Regardless, we opted to return to Shriners in the future to meet with occupational therapy and prosthetics. They can make Patrick an adaptive piece for his bike so he can steer it more easily. And maybe something so he can swing a golf club, stuff like that. For kids like him, they have shifted their focus from creating wearable prosthetics with minimal function to adaptive devices to be used by the kid to make specific tasks easier. Which is what we like!
They told us we can make another appointment and bring his bike in so they can make it fit him perfectly. How awesome is that!!?