United Brachial Plexus Network, Inc.

Hi everybody,
my son is only one, but time to time I read your post and just wonder what my baby's life is going to be. I am scared for him, and I have such a debt toward him that I am trying to learn as much as I can to help him today and tomorrow.
The doc. wants to do a muscle transfer, but will it be enought? will be ever use his arm like mine? will he be able to do any profession he wants? will he be in pain? will he be able to get a private health insurance? Does anyone even know?????????
I am not feeling to good tonight, I hope I am not being rude asking these type of questions but I am scared......

I honestly feel like I can empathize with you, as I am sure many, if not all of us here can do the same. I have thought these same questions many times over and over again. Honestly though, there is no surefire answer. Each child is very different. Each child grows differently and each child's injury is different in some manner. We can only educate ourselves to help our children, do the exercises necessary to keep the joint mobile, try to make the best decisions for our child, and pray for as much recovery as possible.

Here's some interesting information for you that may lift your spirits...

Martin Sheen (actor from The West Wing and numerous movies) has an OBPI.

Bob Dole (he's a government official who ran for president previously) has a TBPI.

A midwife that I have met has an OBPI and still delivers babies.

I just met someone recently at the rehabilitation center where my daughter goes for aquatics that has an OBPI and never would have guessed it until she showed me she had an elbow contracture.

My daughter, who was completely flaccid except for finger and wrist movement at birth and showed no signs of recovery until after 4 months (yes, past that golden 3 month period was the first time she started flinching her arm in any manner) has an OBPI and most people have no clue she has an injury. I notice, my family notices, the doctors notice, my close friends notice, but they are all using a trained eye. She runs, jumps, does somersaults, pretends to do karate, swings, rides her tricycle, plays with dolls, dresses herself (except buttons and zippers), is potty trained (needs help wiping sometimes), feeds herself, dances around, gives her 10 year old brother a run for his money, and on and on...she's 3 years old. She may have trouble with some things (supination, buttons/zippers, elbow contracture, weakness, etc.), but she still is functional and doesn't seem to care at this point. Who knows how that may change in the future, but my goal as her mom and biggest advocate is to help her not to care about her arm, but to just succeed at whatever she wants.

It takes time to progress to the point at which I am at. It takes a lot of healing. Some get to this point quickly, and others unfortunately never seem to get there. One way of moving forward though is to vent and realize that you are not the only one to think in this fashion. Big hugs to you and your family.

Tanya in NY
Amber's Mom, ROBPI, 3 years old

Thank you very much Tanya.

thank you very much Tanya.

I can say the same thing as Tanya, my son is 7 now and although he has a contracture, he can do everything, from monkey bars(even though he is not supposed too ) to cartwheels. He had primary and mod quad and I wouldn't change it for the world. I too , felt like you when he was 1 and I think that we have suceeded in getting him the function that I felt he should have. Most people cannot tell at all that he is injured, when I do tell them they tell me how awesome he is. He is his PE teachers favorite, because he does what he is asked and tries to be perfect in everything even though he has this nasty injury. So what you feel is best for your child.....Gayle MOM od Brandon ROBPI !

As far as insurance, after my hubby got out of the military they told us Brandon would never get health insurance. My son does have health insurance. We have gone through Blue Croos, Switched to Great West and now we have United. They have all been wonderful.......Your son's arm may never work like yours but trust me they find ways to get things done !
Gayle

Good morning

Everything you have or do is "for a lifetime" That's how you become who you are. My personal experience is: I'm glad my parents did not baby me or even tell me about the injury. At a very young age, a child can't relate to it anyway. And trust me, a child will always find a way to do whatever it is they have in mind. (Except, I could never do the cartwheels like Kath) Nor could I do the goofy things in gym class like back bends and stuff like that, but it never bothered me. Bothered the instructor enough that I had to have a dr excuse if I could not participate. 7th grade is when I learned I had a problem.
But then I didn't see it as a problem, I just had to figure out what was important and back bends were not.

I would say that rom would especially be helpful and I can't speak for surgury as it was never an option. Us oldies were told, "at least you can use your arm and you do so well, and look normal" But please keep in mind as your child goes through each stage of his/her development things will change. The biggie is "I don't want to do my exercises" and "I don't have time for that" Then as a teenager, well what can I say. Teens are invencible (sp). Really, those excuses are the ones I used as an adult, so I guess there is not much difference from a child to an adult.

So, moms, do what you can, but please don't be too overbearing. Let your child experience whatever it is they want to do and don't let them know you feel guilty. There is no guilt as I firmly believe that things happen for a reason. For some, it has probably made us a stronger person. And perhaps we did have to try harder, but I'm sure we experienced things that others will never get to.

30ish seems to be the magical age when we start to really notice that gee, I am somewhat limited. Must be that's when degeneration starts??? Like most, I figured that a few days rest now and then when a flare up occured would be fine. Looking back, I would most like do the same thing as I always thought "gee, if I don't live to be old age, I would have wasted my time for nothing. I did join an aerobic class for about 5 years and that did seem to keep things loosened up and probably kept the scar tissue from building up, but then, well you know the excuses. Now with osteo I can't exercise.

I don't know if this has helped or not, but please let your child be a child. They know instinctively if they can't do something or how to figure out how to do it. Don't stand over him/her every minute "just in case they get hurt" It's part of their development. Remember, you have a life also as well as an obligation to give your child every opportunity in life you can. Worrying will not help solve any problems related to erbs.

Sharon 58yr lobpi

I just want to second everything Sharon said.
Kids need to be kids...
When your thirty even forty sounds like old age... LOL..

If I knew when I was a "show off kid" what I know now...
I would not cartwell all over the place, all the time, on one hand!
I think I did it because none of the other kids could cartwheel... LOL...

Kath (adult/robpi 66 )

I knew that Bob Dole had an injury, but I didnt realize it was TBPI. Does anyone know how it happened?

It happened during WWII

You can read about in a book he wrote called "One Solder's Story"

I hope you enjoy the book.

Hugs, Karen