United Brachial Plexus Network, Inc.

This is really complicated, first off, it is all subjective and if someone said, well, your son (or daughter) has this injury and we can operate and he can get 100% without much trouble, then of course, but we all know the world doesn't work like that and that in this hypothetical situation there aren't any facts, so I'll make some up: so let's say that they are similarly injured to my injury, well, I didn't have much pt as an infant, I actually think none, but my mom and dad did ROM movements for me, etc, and when I was a baby I had a lot less function than now, a lot less, but as I grew I gained some, I'm guessing that this is because muscles and things like that grew up and compensated giving me more function, and that seems like a likely thing to happen, if these injuries are left alone. So, let's say "Otto" my child, has said similar injury, the question is surgery with cloudy outcome, I have had rotrator cuff surgery. It was horrible, the anesthetic made me really sick, and having my arm in a sling was really hard and staples and then there was a lot of pain. A LOT! I'd imagine that the primary or secondary BPI surgeries would be even more painful, so I wouldn't choose it, and theres a lot of crazy psychological issues with surgery, being cut open, hospitals, etc. So, based on my surgery experence, which was as nice as the doctors and nurses could make it, and in the situation of an iffy outcome, I wouldn't choose surgery for Otto. I also think that living with this injury is something that can't be described to people who have not. I think maybe we might see the baby as not whole because of their loss, but I am whole, and Otto would be too, or Estelle, a girl. But then theres four more things:
A. Maybe if the kids who are little now have these surgeries by the time they are my age they will be a lot better off.
B. When i was six months old I jumped out of the crib and dislocated my already injured shoulder , now, it may not have made a difference, but it didn't help.
C. My child won't have this injury because I am armed with the information needed to prevent it that was never given to you parents to the great disgrace of the medical profession. Awareness is the greatest defense.
D. It's funny to give little kids old people names.

Great discussion.
I am a strong advocate for surgery.
The primary surgery was not an option when any of us were babies, but given that choice, I would definitely go for it.

The secondary surgeries. Well, I may be one of the few of us who had surgery as a child. Two of them in the 60s. They were both transfers and releases and while they are nothing close to what the docs are doing today, they gave me more range of motion and I was grateful even as a kid for them, even though my SOL was not a splint like today but a body cast that I wore for 6 months. I've also recently had surgery, the mod quad, a year ago Jan. and it too has made a tremendous difference. I am about to head into another surgery on March 22.

In no way am I 100%. All 5 root nerves were ruptured, but I feel I have taken every opportunity to gain as much ROM as possible. That has been my personal choice. Even as a child, with the two surgeries (I was 10 and 11 years old), my parents made it my decision and I decided to do it.

It must be difficult as a parent to make a decision for one's child. I understand that. A lot would depend upon the extent of the injury and the potential benefits to be gained. The short term difficulties and risks of surgery and rehabilitation, i.e. increased therapy, must be balanced against the long term gains.

Nancy