United Brachial Plexus Network

I don't know about the rest of you ... but when I saw the baby with the limp little arm for the first time I realized that is what I must have looked like...

Well the tears started. So glad to see our injury is out of the closet and into the public form.

The message board at 20/20 is full of messages.
The medical professionals are not happy with the one sided presentation... One doctor defended the "floppy arm" as necessary to save the baby.... so professional to use the term "floppy arm"....hmmm that got me.
Love the show and hope they do more..
Kath

Gee Kath, I'm glad I was not the only who looked at the baby's "floppy arm" and oh my God, that is what mine must have looked like. I didn't cry but I was totally disgusted at what little attention was paid to the injury. And the fact that "oh they heal when they are this young" total crap.

Seeing how I was a breech delivery (feet first) I tried to visualize where my arm must have been (probably inside a forcep somewhere) Guess maybe I'm a little angry is why I'm not crying.

I hope 20/20 gets a ton of emails and eventually help to bring the problem more into the open. Sharon

Kath - I've been over reading the ABC boards - you are something! Great comments! I haven't posted yet - still reading and feeling sad - I cried alot last night - that little limp arm... the way the doctor tucked it under the blanket.... It brought back so many memories of trying to dress Brittney, trying not to hurt that arm any more than it was already hurt.... It was strange watching the show with Brittney - I had teared up and I looked at her and she was all teary too and watching very closely. She asked me if that's how her arm looked and if the doctor tried to hide her arm too. I am glad that Brittney watched the show with me. The strange thing is that I think she saw her injury more from a parents' view of their child being injured - a view I'm not sure she has ever thought about. I know it must have been strange for you to watch too. You must have had so many thoughts and feelings going through your mind. I wish that the older OBPI's could have watched this with their parents. There is a special bond between injured children and their parents that is hard to describe. It was hard to see but somehow I feel it helped that I watched it with Brittney - if she were much younger though I might have waited for her to see this segment - but it was good for both Brittney and I to see this show together. I did not like the "floppy arm" wordage either - it sounded so disrespectful and uncaring, insulting, just hit me in a bad way. It reminded me of the first time a specialist referred to Brittney's arm as "deformed" - it bothered me so much.... I would love to hear any comments of how others reacted when they saw this 20/20 segment. It was emotional for us. Christy

OK girls

You both started me crying. Its funny anyone who knows me will tell you I am very stoic. I do not cry and never about myself. Last night I cried for my Mother how frightened she must have been when she discovered this injury the day she arrived home from the hospital. She did tell me how scared she was before she died.. We talked alot about my arm how it happened and what had to be done and why I should always take care of it and use it....
But last night I saw myself in that baby... when they hid the babies arm... I lost it... so sad... I have met so many of the kids but none were infants... all of them showed what little troopers they are.. so I could identify with them....
Last night I identified with a newborn baby... and the parent.... snuff snuff snuff... pass me a tissue... it is like the day I found the boards and started to read about the kids and was so shocked to find that all of the infants were still being injured..... It is like the first picnic I went to and the emotions of seeing all the kids like me.....

The floppy arm just got to me!!!!
If there is no way to prevent this why are those professionals upset....
I had to contain myself... I had more to say when I read some of the posts but they don't really want to read it... they are just trying to attack the parents it is like blaming the victim....

I am glad Brittney got to watch this with you... it is a special bond between mother and injured little cub... I know I had that bond...

Sharon... I only got ticked off when I heard the term floppy arm.... I wonder why I have yet to get angry at the doctor.. guess because he is dead and had to meet his maker and account for his actions...
and maybe sometimes when I can't do something like hold my two little new granddaughters for too long... I have a flash of anger.... someone else's mistake and I have to pay for it again!....
Yikes I am spilling my guts and a bit emotional today... I did not sleep last night... and was up at 5 am.... just going over those video's in my head....

Those two parents were so brave and great to come forward and share this with the world... God Bless them and I thank them.

Still rambling... emotions overflowing.... wonder if we will now get more coverage?????? or does this go back under the rug and in the closet....

Kath

I'm with you Kath. Saw that baby and statrted to cry, couldn't contain myself. Saw and thought for the first time, that's what I must have looked like. Sorry, but after thinking I was the only one up until about three years ago, it just moved me to see on TV, something about what my birth must have been like.

I use the term professional very loosly here. That person wasn't any more professional than I am a two fisted brain surgeon. His choice of words, "floppy arm" was in very poor taste. I'd like to give him my left "floppy arm" right across his face!

Sorry, just had to say it.

Michael

I am sure lots of us had teary night Friday.

I don't know about anyone else but that was a heart wrenching moment for me... just the sight of that tiny baby... how dare anyone call it a floppy arm?
The doctor who posted that on the abc message board did not show any real feeling for the baby...
he said a "floppy arm will not kill the baby"...no but we know at times it has killed our dreams, plans,and even on some occassion our spirit.... what nerve....
Check out his post
http://boards.abcnews.go.com/cgi/abcnew ... irstThread

This was my answer to him.
http://boards.abcnews.go.com/cgi/abcnew ... prevThread

He seems to be only worried about trust...
After reading and viewing that tape I have so many more questions....

Kath

I'm back!!!!!! It's not a floppy arm. It's a DROOPY arm. That's what mine was always called. Why do I still feel like this is a minor thing that I make too big of a deal out of. Is it because my arms don't look too different??? No, that's not true. They do look different. I lookend in the mirror and my arms look ridiculous. One upmone down. Here all this time I thought I held them the same at my sides. Not true. That droopy arm hangs funny
I think life would have been a lot different with two good arms. Maybe I wouldn't have wasted years feeling like I just couldn't do anything right. I could have joined the airforce,stayed skinny, married millionaire--the list os endless--or on the other hand I could have been a total jerk with no compassion for anyone who is not perfect. Who knows????????
Kath, I really think you should go on TV. You speak so well. Hello to all the new people. You'll enjoy coming to a place where we all fit together so well. Pat

I just can't believe I missed this show...I'm reading these posts and going crazy! I had no idea it was on.
I've maybe only been waiting my whole life to see a show on this...AAaaaGah!
Whenever anyone see a rerun date for this please e-mail
me!
Now as for that floppy arm comment, I'm Italian, South Philly style, and that guy would beve been would have been "wishing" for a bpi after he said that....are you with me Mike...Brooklyn style?
Anyhow...I'm really "sick in bed" about missing the show!
-Stephanie

Hey Kath, good response. I have a few things I would like to say to this person too, but I can't seem to get to where I can respond. I registered and still nothing. Can you help me out?

Michael
This takes you right to the 20/20 messageboard on the Abc.com site....
You must sign in to respond... Now my bossy former Brooklyn girl reminder... don't forget to e-mail Babs to tell her how much we loved the show and ask them to do more on this subject... so we can finally get this out in the open..... yeah! for us!!!!

http://boards.abcnews.go.com/cgi/abcnew ... cnews_2020

Kath