United Brachial Plexus Network, Inc.

Hi everyone. Amber's Mom again. I wanted some honest opinions on how you all might handle this situation, as I'm sure you all have previously.

What do you say to someone who asks, "oh, what's wrong with your child's arm?"

I've encountered this situation a number of times, but to this day (and Amber is 21 months old), I have not found a tactful and brief response that I don't have trouble stumbling over to get out. I just need to find a few short phrases to say what needs to be said, because I want people to know what happened, but I feel like I scare people off when I stumble over the words and say things like "my midwife pulled on her head and hurt her nerves going down her arm permanently." People's response to that is, "oh," and then I know I've lost them and a prime opportunity to educate some. I'm very frustrated and just want to smoothly say...I don't know what I want to say.

HELP!!!

Tanya in NY

When I am asked what happened to my arm I tell them that I have a preventable birth injury to my shoulder. It is called BPI or Erb's plasy. It is completly 100% preventable, and occurs as often as 2 to 5 babies out of every 1000. It is damge to the nerve bundles in my shoulder from being pulled inproperly during birth.

Hi Tanya,

I answered you on the General Forum.

Nancy

Hi Tanya,
When people ask me, "What happened to your arm?" I tell them "Its Bracial Plexus Palsy." and I explain that its an injury to nerves in the neck area, and that although the injury can occur at any time during ones life, it happened to me while I was being born.

I tell them I have a birth injury and then how it happens and that it is preventable with education.

Now that I know more I use it to educate and possibly prevent injury to someone they know.

I use to just give a quick answer and move on not wanting to bore them. Now I feel differently, if someone is brave enough to ask a disabled person what is wrong with them then they must be brave enough to listen to the answer.

You never know when the information you share will help someone.

Kath

I have a 1 year old son who just had Mod Quad surgery 3 weeks ago, he is in a splint and I am asked this question often. I tell them it was a birth injury and it's not broken. He had surgery because it wasn't healing itself.

I keep it very simple. "She has a birth injury and her nerves were damaged while she was being born. Her left arm is not as strong as her right arm". I know that some people here would disagree, but I do not feel it necessary to 'educate' when people ask. I think that her feelings are more important than strangers' curiousity. I do not know most of the people asking and if I did I would tell them more if they wanted to know more, but most do not. My life right now is not about educating others, but more about what is right for my child and she does not need to hear about her birth when strangers ask. Someday when she is older I might be way more vocal!
Christy

Just wanted to let y'all know that Britt said that a soccer team mate was asking about her arm at tonights soccer practice. She asked about her arm and what was wrong with it and Brittney said that " Gees if she is bold enough to ask then I'm going to tell her!!" sort of funny since I think that other adults here have mentioned the same thing.... Anyway she said that she told the kid that she was injured during her birth, and the kid said, " "Bummer" and that was it. She is very well liked by her team mates, and they are curious. Her team mates do not need too much info, but they do need an answer... They just want to know so that they can understand.
Christy

I just arrived here. It's a bit overwhelming and I'm not my usual cheery self

Suppose nobody told you why you were OBPI, and you got the message that it wasn't ok to ask? By the way your parents avoided giving plain answers to other folks when you were around?

I was 22 before a doctor told me how OBPI happens.

Instead, I got my version of the story from my older brother when I was 5. Now I'm not trying to be sarcastic, it's just one of those darnedest things kids say, and you are invited to laugh. There was a delivery truck, and it got into an accident. I was being driven home from Kaiser Hospital a week after being born, and I got tossed out of my seat and into the wall.

So that's what I told people.

Anyway, I think a brief, frank answer like yours is better. Considering that your child is listening too.

Welcome Erik

And I am laughing at the story.

My Mom told me when I was small that I was to big to fit into the glass box in the hospital.

She told me when I was very young that the doctor pressed to hard when he was delivering me. So I always knew I had Erb's Palsy. Until 5 years ago I did not realize the full extent of my injury nor exactly how it happened. I just stopped researching but thanks to the internet I was finally able to get answers. I was shocked to find out there were so many others with the same injury.

I am glad you found the message board it is interesting to read all we have in common with this injury.
Kath