United Brachial Plexus Network, Inc.

I realy want the scoop about how this will effect my baby from now threw adulthood. I feel as if Dr.s say only things that address treatment, they have no personal conversation and all of our visits seem so rushed that my head is spinning and my questions are ancwered as if I asked something stupid.And I do not know what I should do to help my son and exactly the way this will effect him. If anyone can tell me how they have been effected by this type of injury what childhood was like and even teen years and adult living that would be greatly apreciated and if you could describe your treatment of this injury so I can compare and beter my sons chance for recovery. I would also like to know if anyone had seeked legal acttion and how that may have turned out. Thank You For All Of Your Help!

I feel like you have to make the best of your baby's injury for them. My son is 4 and I don't think that he has ever heard me use the term, bad arm....my 14 year old said to me the other day, Look my the baby is using his bad arm and my son with robpi said, I don't have a bad arm. He can do alot more than we ever dreamed, PERSISTANCE does pay off. My son has had 2 surgeries at TCH and had faired well with both. He has had good recovery. I cannot tell you about teen and adult years, my son has a way to go, however, I can tell you that if you make the most of it,and encourage the child, they will suceed.....p.s. my son learned how to swim on his fourth birthday....something that I felt he would never accomoplish, but I never let him know that and he really surprised me....I post anonymously because of pending litigation !!!@

Hello "neen" and welcome,
Well you have come to the right place. There are a lot of us obpi here who have lived with this a long time. I myself am 49. Your question about the teen and adult years is a good one.

In my experience the teen years were a bit rough, self-image is a problem with all teens so we've got a bit of a rough start going in. I think that finding a support group would have been really helpful for me to have seen others with the injury and not just docs.

What I can reassure you about is that we adjust, we learn to be flexible (and that is a good thing in life) and we live 'normal' lives, have families and careers. Some things are a challenge to us, but what matters is how you face those challenges, not that you have them. That is what builds character. And believe me, we are all 'characters'. Ha.

Anyway, keep asking questions, we'll all answer as we can.

Nancy

hey "neen"

Sorry for the late reply iv jst not visited 4 a few days!
I think im quite good at answerin these questions...The parents are too but it is probably good for you to have someone to answer who has had erbs palsy like Nancy.
Well im 16 and iv had absolutely no treatment for my arm. But i have done a lot of dancin and gymnastics, karate and jumpin joeys(its a kinda fitness fun for kids) and i think through that over the years my arm has got stronger and better than it was when i was born. No one told my parents where 2 go after i was born...home basically and my arm would get better through time! well that didnt happen. My mum realised that and started workin less hours and noted the things she done day-to-day and then worked in into an exercise! i think thats amazin! my mum helped me through it and i am grateful for that. my mum doesnt talk about it which makes it kinda hard to deal with when ppl called me stupid names at school about it (robot, SPASTIC(that one really hurts), and this robot out of starwars,cant mind the name) but when i came here they told me that this was due to ignorance...and clearly they were all right. So yes i agree with Nancy a support group would be good.
OH! i would explain to your child wot happened for his arm to end up like that because i didnt know until a couple of months ago i jst new the name of it. And believe me its tricky when ppl ask wots up with it and my mum isnt there! but now i know. it will save him from wonderin about it.
I wouldnt hold him back in anything he wants to do. If he wants to do sports, let him do it, even though it will be hard for him he will learn that that is somethin he isnt so good at...like me. But i found music! i play the PIANO pretty good 2. and the trumpet. A lot of ppl are shocked i play the piano but my grandad built my an arm rest to my arm reachess the piano. So we'v walked around the problem and solved. it.
I dont actually remember bein teased about my arm when i was at primary school(4yrs-11yrs) i jst remember A LOT of questions. and one incident but when i got to high school i think everyone was self concious and were gettin into the way they looked, hair and dress sense and they noticed my arm then and began to call me names. i did upset me but overall i think its made me a better person. Stronger.
So i wouldnt worry too much about ur son because as long as ur behind him 100% he'll turn out great!
Good luck!

Michelle -x-

Neen--I just wanted to post a comment on your chosen name here. It brings back a lot of memories and I haven't heard anyone called that in a long long time. Not since a sibling of mine was killed when she was 2 years old. We called her "neen" too (mostly because she couldn't say her name correctly). Never heard anyone use it since. Wow, it is odd just how much katie looks like her and I hadn't even noticed until now. Thanks, it brought back some good memories for me too...she was such a cutie patootie. Such a long time ago.

Hope you get the answers you are looking for and your heartache eases up some.

#1 Be positive, never let your child believe he is unable to do the things he wants to, with BPI there is limitation but this injury does not mean I cant't, it means I will have to just try harder.

#2 Encouragement, these children often become very fustrated, encourage them everyday that as long as they try their best this makes them a winner. BPI children need constant reassurance.

3# Let him decide for himself. It is so easy for parents to try to limit these children because they feel they wouldnt do well, never decide for your child, most likely if they really want to do something they will achive, being the best kid on the team is not what is important, what is important is their effort & drive.

4# Don't ever let make excusses for your child because if his arm in front of him, this will only inable your child & put doubt in their mind about thier abilities before they have even tried, this sets a child up for failure. They need to know we belive in them.

I have a seven year old daughter & we have both been misguided, although angry we have moved on & she is achieving and growing to the best of her ability, I am proud of her, I truly believe that the self confidence we have built up in her will truly her through her teen years and adult life.
I wish everyday this birth injury would have been prevented, but unfortunately we can not turn back time. I can not share words that will ease your pain for it never truly goes away, in the same breath anger& sadness does not change what has been done.

Be strong that is the best thing we can do for our children. Remember they are the victims, it is so easy for us to get wrapped up in our own pain that we loose face with what is happening in their lives.