United Brachial Plexus Network, Inc.

Hello,

My 2 and a half year old daughter has a right BPI. She had a tendon transfer and shoulder release surgery in October by Dr. Kozin. She still has problems..of course I expected (or hoped!) she would be 100% after the surgery but she is still unable to dress or undress herself, still has trouble feeding herself with her BPI arm, etc. We have been going through a lawsuit since she was about 3 months old. Of course it's moving very slowly. Our lawyer wants us to go to NYC (we are from Rochester, NY) to get examined by a Dr there who will testify on our behalf. Has anyone gone through something similar? The lawyer said it was a strong case and now 2 years later they want her to see this Dr. They are paying all the expenses so I'm thinking that is a good thing but I'm still unsure about the whole thing. I believe we have a strong case (We have a video of the birth, which is great!) but I have heard a lot of people lose....Any advice or anything?!?!!? I really have no idea what to think about all of this.
Thanks,
Tracie

Hi Tracie...

Please accept this response in the way I am intending for it to come to you - with kindness and a smile and a soft voice. I am a mom of two children. My daughter who was the bpi injury is now 12 years old.

When my daughter was in (regular preschool), I was a room mom and I would go there 3 x a week to help with lunchtime and rest time. There wasn't one child in that room who could open their lunches by themselves. Ooh did I (inwardly) swear at each mom each time I was there --- did they even know that someone else had to unpack their child's lunch that came in multiple pieces of individually wrapped items? Why couldn't it come in one bowl, or box or container? At that age, they are eating finger foods and still making a mess otherwise. Oh the floor I had to clean up.

Each one of them (age 3) needed help pottying. It was the rare child who could do the whole thing themselves with the clothing and all. Every single child needed help with boots and coats and zipping and buttons. Again, the rare child was completely independent. If they were independent by age two, I would have been out of a volunteer job!

Your daughter may or may not want to use the bpi arm to do day to day things. In those early days you could hear my everlasting statement to her "use lefty, use lefty, use lefty, use lefty, use lefty". Egads -- I think when she was young she probably didn't know my name was mommy --- mommy? oh you mean the "use lefty lady" ?

My daughter chose to redominate by using the other arm because it was just too hard and caused her brain to tire so much. She was SO excited when she learned how to do things one-armed. I'm not saying that you should stop trying or stop doing therapy - just giving you a heads up that just because a child might be able to move in that direction doesn't mean that it will be comfortable movement or one that they will choose to use as they get older. We all have to keep an open mind.

About court -- any doctor that's going to fight for your child needs all possible information - medical reports and even a meeting. It's not unusual. The other side may ask for a meeting, too. Your attorney will guide you through it.

I'm sorry that you expected to get 100% return and was disappointed. The most difficult thing I had to learn with my daughter was that BPI is a lifelong injury. Unless the injury completely resolves very early on without any intervention, it never goes away - it has varying degrees and there will be ongoing issues and deficits that can occur almost overnight (especially when there is a growth spurt or during puberty). Try not to let that emotion of disappointment (or worse) pass to your child because that's one thing that can go really deeply --- if you look at her arm and grimace (without even realizing it), then this can really be upsetting for her -- she might never be able to please you as far as her arm is concerned. But the different varying degrees of function won't stop the spirit of a child -- my daughter has very little use of her arm but her spirit is soaring (although pubery does really mess with that, too). Do that for your child. I know that your focus for your lawsuit almost has to be microscopic but when it's done and over -- just let her have the freedom to be whoever she is supposed to be. Our kids can be as successful as anyone else. You'll see -- she will soar!

Good luck with your case and I hope for the best for your daughter,
francine

tracy, good luck with your lawsuit. i am in a different type of legal situation with my bpi. it is tough. i sometimes feel like just giving up on it. but then, if i give up now, i will never get anywhere. i had to get nasty and ugly to get an emg. but it is worth the fight. i have found that the more you make your "bad" arm and hand do, the stronger it gets. if i let my bad hand get lazy for just 2 days, it lets me know. and it gets ugly. and i mean ugly! even though i was injured as an adult, it is probably the same with a child injured at birth. as Fran says use lefty use lefty use lefty (or righty either one) that is the best thing you could do for your little one. again, good luck on your lawsuit. francine can help you out more than i can though when it comes to child injuries. she is one of my favorite people on this forum.

Tracie:
I have to echo Francine's advice. I'm sure you were hoping that your child would have 100% return, really that is not realistic. However, you can't give up at this point and say she won't get any better. Juliana continued to make progress for years. I still expect that she will make some progress. As she ages (she is now 11+) she learns new and better ways to accommodate the injury. Juliana had nerve grafting at 4 1/2 months. She didn't gain hand function until she was more than 3 years old. I really didn't think she would EVER have hand function. And yet she did get it! It isn't perfect, but who cares!!

I, like Francine was the "use lefty lady". I'm glad I did. If it were up to Juliana she would just let her left arm hang. But she is now a competitive tennis player and she needs that left arm and hand to toss a tennis ball. I'm glad I encouraged her to keep using it, since she needs it now. And, I think she will improve some of her function as she serves more and more. And if she doesn't, well, she will still learn how to do things her own way.

I have my own story of getting dressed independently.... when Juliana, who is young for her grade, was in a summer camp program at our JCC we picked the kids up in the dressing room of the pool. Swimming was the last activity of the day. All the other kids could get dressed on their own and there was Juliana just looking at me... I looked at a mom I was friends with. She and i have older kids who are the same age... and I said something along the lines of "she'll never do this stuff". My friend looked at me and said "hey, she is at least 6 months younger than everyone else... give her time." Guess what, 6 months later Juliana was dressing herself.

Give yourself and your daughter a break. Let it happen. Enjoy this time... they get older... they do go thru puberty and it is not as much fun as you could imagine...!!!!

claudia

ohmygosh Claudia - you reminded me of how I finally got Maia motivated to work on clothes herself....

we always took baths together because (without her knowing it) we would spend an hour in the bathtub and it was 100% fun therapy - what an advantage the bathtub gave us!

so one day I had this master plan... I got in the bathtub and started playing around in there all by myself. I filled the tub with all of "our" toys and was splashing and doing shaving cream by myself on the shower door -- and Maia heard all this ruckus and ran into the bathroom -- "I wanna get in the bathtub momma!!" and I said -- "SURE! get undressed and hop right in!" and she said, I can't get undressed, I need your help - to which I replied - sorry honey, I have shaving cream all over my hands and I don't want to get it on your clothes to ruin your clothes....and I re-shut the shower door so I could continue swirling shaving cream (which she could see me do) and she stood there (I could hear the brain saying 'what do I do now?") and piece by piece she removed every single piece of clothing all on her own!!! first time ever!!

That's all she needed and from that point, she had to do it all on her own. Teaching her to put the clothes on at that point became fun and our OT absolutely made it so fun --- keywords -- arm was a snake that wanted to find it's nest inside the sleeve... and more...
anyway- just sharing one of those precious memories...

also - she potty trained the DAY she turned 4 - I showed her the diaper plastic bag and she couldn't find the number 4 on it anywhere!!! so she realized that this was the end of the line. oh the things we say and do.....

I know how unrealistic it is that I wanted her arm to be 100% after the surgery. I was just hoping is all! I appreciate all of your responses. I am still kind of new to all of this and i'm not sure what to expect. I am constantly telling Kelsey to use her right arm for everything and it's gotten to the point where she'll start using her left and before I even say anything she'll use her right because she knows I will tell her to! And I do see progress everyday. And I know that no matter what, she is going to be a great person and she will overcome anything....I have no doubts whatsoever!!!!

My now 4 year old daughter had nerve grafting surgery at 7 mos, before the surgery she had no use of her left arm. But with 4 years of OT 2X per week she now has almost full use of her arm. And to be honest with you she has no idea that her left arm is different then her right. Like all of you have said I do have to remind her to use "lefty" but she can dress herself and is very independant. But my husband and I have noticed that her left elbow is very tight and she can't extend it as long as her right. Like I said she doesn't realize it. but she will be attending kindergarten this fall and im just nervous, I don't want anyone to tease my daughter about her injury. Kids these days are cruel. and I just want to protect my baby, We have never treated her any differently than if she did not have this injury, but when she does realize that her arm is shorter or weaker then her other I want to explain it to her in a way that she will understand and will still stay confident, Any advice will help. Thank you!