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

"she has permanent nerve damage from her delivery"
"she was permanently injured when she was born"

Hi Tanya, how about "Amber has a life long injury due to her very tramtic birth.....she was a shoulder dystocia birth"

That's one of the line's I use and believe it or not people usually ask lot's of questions and awarness is made!

Good luck and kisses for lil Amber!

Lenni

It is a really hard question because emotions spring so readily to the surface and because this is such a complex injury, difficult to explain.

I usually answer when someone either asks about my arm, or more usually, when they just look askance at me (because they are too 'polite' to ask) that my arm is partially paralyzed from an injury at birth. If they seem interested then I go into my awareness mode and tell them that the injury did not have to happen and that unfortunately this injury is still happening today. I try to gauge my answer based upon what I can determine is the interest level of the person asking.

Most people don't know any of the medical terms: brachial plexus injury, erb's palsy, or shoulder dystocia. I try to keep my answer as simple as possible.

Nancy

Hi!
I ususally say the baby was injured at birth.
Generally people want a little more than that. It usually starts because of the scars. "oh, what happened to his leg?" And I explain he had to have a nerve transfer because he was injured at birth and his nerves needed repair because he wasn't moving his arm. People then understand and become really worried about the baby. They keep asking me when they see me again if he's already moving his arm. I say it's a slow recovery... :-/
It always makes me feel like crying when I have to think "No, he is not moving his arm yet", but I answer more to the optimistic side "these things have their timing, the tissue needs to regenerate... blah, blah, blah..."
On some ocasions I only say he has a slight problem in his arm but is recovering - that's when I'm in a hurry and don't feel like talking about it. When I say that people don't give it second thoughts - they must think it's something unimportant, like saying he fell down and hurt his knee.
I think if a child is always treated like he/she has a rare disease, a brachial plexus palsy, some weird called injury, he'll grow up to be that person in the neighbourhood with erbs palsy. The kid who grew up to be a doctor or something despite having a strange called problem and not moving his arm. Perhaps if I don't give it that importance people will forget about it and treat him like a normal child. But it's difficult not to talk about it because I'm always wanting to and everytime someone brings it up I have difficulty in saying "oh, he's OK. where are you going for your holidays?"

All these are great responses. I think I heard someone on here once say they made out business-like cards and handed them to people when they asked, describing a BPI. I know you were mainly asking about "obstetrical injuries" but we are faced with the similar situation with our son James. He is right TBPI. 11 years old. He gets so sick of people asking him and sometimes he is rude and we have to really get on him about it. He will just look at us and then roll his eyes, like "not again!" But sometimes when you try to explain it to where people can understand and you also tell them about the birth injury they look at you like "OKAYYYYYYYYYYYY!" It is frustrating, but Im sure it has to be more frustrating when your Dr. whom you trusted, caused this to happen to your child. Its like some people want to know but when you start explaining, their sorry they asked. Maybe its just me, I tend to ramble on alot.....

I always try to keep in mind that "little" ears are listening, mainly my 5-year old and 3-year old. Therefore, I think it's important not to sound angry or dramatic about it, because I worry that it will affect them in the wrong way. I usually say that her arm was injured during birth, and that she's worked really hard to get it a lot better than it was.
- Tina

Tina...I love that you mention that she's worked really hard to make it better whenever you talk about it. It's so important to make these kids understand what there doing is worthwhile and to recognize the magnificent progress that THEY have made!!!

Dear Priscilla,
In answer to your question of the "business cards" please go to http://ubpn.org/awareness/A2002linkresource.html scroll way down to Medical cards and click on that...When all that info pops up, keep reading and continue to page 4, I think it is.

I usually say "the nerves to his arm were injured during delivery," or the long version, "his arm is partially paralyzed because his nerves were damaged during delivery".

Kate