United Brachial Plexus Network, Inc.

Hello - I just needed to talk and thought I'd share my feelings... My daughter Brittney is 10, has a L BPI and carries her arm slightly bent. Her Girl Scout troop went on a field trip yesterday to the "Fire & EMS Center" where they learned some first aid info. The lady at the Center who addressed the troop started talking about bone fractures and what to do. She then asked Brittney if she had broken her arm because of the way she couldn't straighten it completely. There are 17 girls in the troop and the woman noticed Brittney and her arm. She asked Britt what was wrong with her arm and Brittney said, "I have brachial plexus palsy" and the woman said, "Oh so how long have you had this???" and Brittney told her that it happened at birth. She then asked Brittney's troop leader if she (her leader) could explain what a "Brachial Plexus Palsy" was and her leader just told the EMS woman that Brittney was injured during birth and wasn't sure how to explain it. Brittney's friend Sarah tried to help by saying, "It was a Doctor who did that to her when she was born". Brittney finally said, "My nerves were damaged when I was born". The woman asked Brittney if she could use her as an example of what a fractured arm looked like. Brittney (who loves to be in the spot light) said "Sure". The first aid woman then asked Brittney and another girl to stand side by side so she could compare the girls' two arms to show them the difference of what a 'normal' arm looks like and what a 'fractured' arm looks like - just to give them an idea. She explained to the troop how to splint a fractured arm and then told Brittney that maybe she should wear a bracelet to explain about her arm because if Britt was ever unable to talk and an ambulance was called - they might assume she had a broken arm and try to splint it. Brittney came home and told me this whole story - I did not go on this field trip. Brittney was not upset at all and thought the whole thing was sort of funny that the "First Aid" woman didn't know what her BP arm injury was. Brittney was 'excited' that they used her as an example in front of the whole troop as to what a fractured arm looks like. So Brittney is just fine with everything and I am pretty ANGRY about the whole situation. I think Brittney sensed that I was a little aggravated when she said, "Mom the woman's name is Deb and she has short curly blonde hair" (she knew I was going to go talk to her). I asked her if it bothered her to get up in front of the other girls and she said "no - it was cool that I got to be the example and besides - they're my friends and already know about my arm". I guess the whole reason I'm writing here is because I'm ticked that the woman had never heard of a brachial plexus injury and works for the EMS, and that she used MY child to show what an arm should NOT look like. She did ask Brittney first (whispered to her) if she would mind showing her arm so if Brittney was shy she could have told her "NO". Brittney seems to deal with things that come up about her arm in such a positive way - it always like ' this is me, this is who I am, I have nothing to be embarrassed about or to hide'. I just keep thinking about all of the girls in the troop looking at her slightly bent arm next to the other girls straight arm and I'm wondering if this will become bad memories for her later. I was wondering if those of you who are older with an OBPI have bad memories NOW over things that didn't bother you at the time? Also I was planning on going to talk to 'Deb' the EMS woman and give her some info about BPI's. I realize that she wasn't familiar with Britt's injury, but to me, common since should tell any adult that comparing two children's arms in front of other children - no matter if the one child said she didn't care - was not a good thing to do to the willing child. Any thoughts on this???? Brittney doesn't go out of her way to hide her injury but she also has always done the best she could to fit right in with the others - and this DEB woman pulls her out and draws unnecessary attention to Brittney's arm. Should I be angry when Brittney is not?? Well I am but ..... Thank you for letting me get this off of my mind and for any input you'd like to share. Maybe some of you have similar stories that you've always wanted to share and we can all get angry together!!! Christy

Hi Christy,
To be honest, my response has been pretty much like Brittney's. I cannot tell you how many times when I have been in the ER for something else and they notice my bpi, they ask if it would be ok if they showed it to other interns and residents and nurses because while they knew about it, they had never seen one before.

Brittney will face this her whole life and it sounds as if she dealt with it very well. She enjoyed the experience of helping to educate others.

I know that as a mom you are hurt and it is completely understandable and I sympathize with you. Maybe when yeou talk with this EMS person, you can use it as an opportunity to educate her further about bpi?

Nancy

Thanks Nancy. The things that upset me do not seem to bother Brittney - and probably there is so much that happens daily that she doesn't even think to mention to me because she is used to it. She really didn't think anything of what happened. I guess in this case I was upset because the woman didn't want to show what a BPI was, but what a fractured arm looked like and how to fix it. She was comparing how straight the one girls arm was to how bent Britt's was. I really value your input and others who have lived with brachial plexus injuries. You help me see things from Brittney's viewpoint. Thanks again, Christy

Christy

I am sure your are angry... and you are right it was thoughtless for this lady to do this but she does not understand and probably did not mean to be so rude...

Brittney handled it great... it is something she will have to deal with and she is so secure with her friends that she was not uncomfortable. It gave her a chance to educate this lady...

Now my advice - Awareness 2000 I copied the entire Awareness Packets and dropped them off to every Ambulance Company and the Paramedics in my Area...
I suggest that you bring the Awareness Materials to the Ambulance Corp and explain what a bpi is and use this experience to bring this injury to their attention...
You will still be annoyed because you are the Mother... but you may feel better

Again I am happy that she is so comfortable with her school friends that is so important that they understand and accept her for who she is and not focus on her arm and the differences...

I still have to explain my arm to doctors and to medical staffs in hospital... I guess I always will. Look at it as a change to educate.
feel better
Kath

Thanks Kath. I ordered a bunch of the awareness info and here is my chance to use put it to good use!:) Yep - I am still annoyed but... I know I will feel better after talking to them and giving them some information. I will give her Girl Scout Leaders some info too. I didn't have the info when we moved here a few years ago and she first joined this troop so they only know what I've verbally told them. It must get so aggravating to have to explain to doctors about your arm over and over (the ones who'd expect to know). I know that Britt is already tired of answering questions at school over and over. She says, "They just don't get it!" Then she laughs! Thanks for understanding, Christy

Christy,
Brittany handled the situation as she saw fit at the time, if she gets angry later and is upset, it won't really make a diference, the situation already occured and what can she really do later? That may sound pessimistic, but theres no way to change what happened now, or a year from now, but by giving out awareness packets to the EMTs and especially Brittany's girl scout leader may help prevent such a situation. Actually it really isn't that big a deal in the grand scheme of things, Brittany is going to come up against ignorance in forms that are a lot worse than this one, hopefully she will be able to handle them with as much charm, grace and humor as she did this time. Congratulate yourself on raising such a great daughter and try not to focus too much on the negative.
Carrie

Kudos to Brittney, she's got her act together already. I think we all had to deal with the ignorance of some people growing up. But to their defense, they knew very little about BPI 50 years ago. Today however, there's no excuse. You're right about common sense, she didn't show too much.

I do agree with you about being upset, as a parent myself I would be too. But the education of this EMS person should take priority. Give her as much information as possible. Not only for herself but possibly for distribution in her field just to bring as much awareness as possible.

Brittney sounds very strong and I'm sure she'll be fine as she grows up. I too was asked the very same question around her age, and handled it the same way.

I'll close with educate the EMS lady first then you can give her the meaning of common sense.

Take Care Christy, High Five to Brittney!!!!!!!!!!

Hi Christy-I am new to (replying to) message boards, but thought I would weigh in on this one. My daugter is 12, and very sensitive about "fitting in." She had the muscle/tendon surgery when she was 8, and while it alleviated some of her problems, it created new ones. Stacy is, as I said, at that "awkward" pre-teen age, and doesn't like any attention to be called to her arm problems. She hates to talk about it. I have had numerous meetings at her schools with the therapists, PE teachers, and typing teacher in elementary school. She likes to be treated as any other child. I give Brittany a huge thumbs up with being comfortable within herself, and give you, as her mom, a huge thumbs up for helping her to feel good about herself. Stacy tends to be a little shy, anyway. We have always taught her that she can do just about anything that she wants, she just has to figure out how it works for her. We are, however, starting to think of things that will present problems to her in the future, such as cooking. Stacy also hates to answer questions about her arm. It can be really hard on her when she is asked publicly, and in front of other people. Be proud of yourself and your daughter-sounds like she is a confident young lady!