United Brachial Plexus Network, Inc.

*WARNING: very long, go get your coffee and a snack!

Hello, Rachel. Welcome to the board. Hopefully, this will not be your only thread and you'll continue to post at least occasionally. Sorry I'm so late in replying. I tend to "talk" a lot, as I'm sure you'll soon discover. LOL!

I'm sorry that you are mad, but if those are your true feelings, then I'm glad that you shared them. I'm not sure why some of the parents seem to be mad back at you for being mad. Although I don't agree with everything you said, I like to read the thoughts of the people who actually live with this injury. I'm the mom of a beautiful 7 y.o. daughter, Nicole, who has a LOBPI and a 23 month old son, Joshua, who's a little cutie.

It's interesting that you mentioned being a trumpet and trombone player b/c those are the two instruments that Nicole's Kindermusik instructor recently told me would likely be good options for Nicole. Her injury is severe and she has very little use of her fingers (they cannot extend), so something like a violin would likely be very difficult for Nicole, although I'd never tell her what instruments she can and can't do. Nicole also loves to dance and is in her 4th year.

Have we tried to "fix" Nicole's arm? I guess I'd have to say no b/c I knew from early on that in this imperfect system that we live in, it will never be completely healed. Rather, we look forward to a time when we will all have perfect health and live on a paradise earth. In the meantime, we did take a pretty aggressive approach to helping Nicole's injury to recover as much as possible. She had 4 surgeries, all under the age of 3, and has had lots of PT, OT, Aqua PT and various forms of "alternative" therapy, such as dance & Kindermusik (as I mentioned), therapeutic horseback riding, skiing in a special program, etc. Nicole has always been a very willing participant in the therapy, which helped me to feel confident that for her it was the right decision. At this point, her formal therapy is basically limited to OT monthly and annual PT & OT evaluations. The decrease in therapy has been a gradual shift for us. Your dad mentioned doing therapy for 24 months. I agree that there is a limited time when you can really benefit a lot from regular therapy and then need to shift more to participating in group activities (such as sports, swimming, dance, etc.). I think that surgery extends that window of opportunity for improvement though.

I have thought a lot about Nicole feeling like we were always trying to "fix" her and the possible psychological impact. I think that was part of my decision to decline a recently recommended surgery, which would hopefully help her to be able to supinate. Now that Nicole is older, she can participate more in medical decisions and I got her input. She is okay with not being able to supinate and I chose to support that decision and not have the surgery done. I think that one of the big reasons we had the other surgeries done is b/c I've read a lot about pain and overuse of the uninjured arm and wanted to do all we could to avoid that. Did you know that you forget most of what you experience within the first 2 years of life? That made it easier to have the surgeries done when Nicole was so young. Little ones can handle it so much better than the older ones. You mentioned that you probably wouldn't want to have surgery now to fix anything (although there are likely some things that could be done if you ever change your mind) b/c you've found your own way of doing things. I knew that Nicole would find her own way of doing things with or w/o surgery, but another reason we did the surgeries at such a young age is b/c we wanted to help the nerves and muscles before the habits were set, knowing that as you said, it would be harder to change the ways of doing things later. I think a lot of people your age who haven't had surgery and aren't in pain would likely choose to continue w/o surgery too.

I'd like to let you know though that I'm not on this board b/c I feel sorry for myself or for Nicole. I've never felt that way. Sure, I'm sorry that she was injured esp. when she didn't have to be, but I don't "feel sorry" for her, if you know what I mean, nor does she feel sorry for herself. Sure, some things are more difficult, but she usually just adjusts as she needs to. For me, at this point, I mostly visit the board to offer support when I can. Why do people need support? Not just b/c they might be feeling sorry for themselves, but there are lots of reasons. People often have ?s about finding / selecting a specialist, making decisions on whether or not to have a surgery done, what forms of therapy people are doing and having success with, if they should pursue litigation, how to select an attorney, how to fight insurance company rejections, how to receive early intervention services, how to receive school services (esp. when they try to deny them), if their child should even get school services, how to select a daycare, etc. etc. This board is the source of information for so many people b/c often parents of older children and adults with BPIs are a much greater source of information than drs. or other literature out there. For some, this is simply a place to vent about frustrations. For me, I think it has helped me to be able to help others. As the Bible says, there is more happiness in giving than in receiving.

It might seem like people here obsess over BPIs b/c that's why they're here, but this message board is only a small portion of many of our lives. I think that Carrie really explained this point well so I won't repeat it all. I know that for us, this board is a place I might go when Nicole is in bed or in school, etc.

You mentioned that your parents realized that it was nobody's fault. While that might or might not be the case with your injury (as you know drs. are often wrong & are sometimes dishonest), it's not the case with most OBPIs. I think that is one of the reasons this is so hard for so many parents to deal with -- b/c it is usually avoidable. Some women have had drs. agree to do a c/s and then the on-call dr. won't do it; some women beg for a c/s or to be induced early, only to be denied; others have a vaginal delivery as planned, but have a dr. simply use excessive traction or even have a nurse jump onto their stomach. Believe me, I have read some horror stories about extremely traumatic deliveries. While Nicole's injury was avoidable and was due to excessive traction, it wasn't as traumatic as many of the experiences I've read. I have to remind myself that sometimes b/c I'll be honest I read some of the messages on here about moms crying all the time and I initially think to myself, would you just get over it and get on with your life (although I'd never actually say that to them). But then I realize that while I didn't feel the need to cry all the time, it doesn't mean that everyone handles things the same and some parents have also been through much more traumatic experiences. Nicole's birth was also much different for my husband than for me b/c he saw what was happening and thought the dr. was going to pull Nicole's head off b/c he pulled so hard. Many moms suffer permanent injuries during birth too. I never felt guilty about Nicole's injury and couldn't understand why a mom would when I first came to this board, but eventually I understood and have had passing feelings -- until I force myself to use reason and know it wasn't my fault. It's hard though, Rachel, and as much as you say, parents don't feel guilty, and most of "know" it's not our fault, it's hard to not at least briefly entertain the thought.

About the Dr. Phil show, I'm surprised that's what brought you here if you're just now posting. Anyway, I understand your hurt for the child. I too felt hurt for the child (well, for both children). However, I did later rationalize that it is TV and that it probably wasn't the whole story or that it was twisted a bit. Hopefully, you have realized that too. I have met the mom, Lisa, and she is a very "normal" caring individual and mom. Her son also seems very "normal" as well. I think that her "obsession" or whatever you want to call it with BPIs is about a much bigger picture than just her son. I'm sure that some of her "BPI time" has been spent researching ways to help her son, but I think that more of it has to do with helping other families impacted by this and more importantly, helping to prevent BPIs from happening in the first place. So, I guess you can think of BPI awareness and prevention as a part-time job that she doesn't get paid for, but does by volunteering her time. As with any job or activity, we all have to find balance and hopefully her family has found that balance. As I mentioned, when I met her, she didn't seem to be overly obsessed with BPIs. Another thing to remember is that her son is young and it's in the early days that parents spend the most time researching about this injury. Even if they choose not to have surgery, it should be done, in my opinion, after fully researching all available options.

Are you still awake? I'm almost done, I promise. Anyway, I hope that after "getting to know" some of us parents, you have a little different perspective and know that we're not all here to feel sorry for ourselves, but to exchange information and / or support to those who need it (esp. the ones just beginning this journey). I hope you know that most of us do live our lives and don't deal with BPIs too much except for mainly here and just as needed in "life." It would be great if you could attend camp sometime to meet some of our amazing children and to be a great role model for them.

Thank you also, to your dad, for posting and to the many others who added so much value to this thread. Most of the replies have been very respectful. For those who are "mad" at Rachel, or at least seem to be, please agree to disagree and value her opinions. It could be one of our children posting here someday with a similar message. It's great to be aware of all the different ways they might feel in the future. As parents, I know we do think of that and just try our best to make decisions that our children will hopefully be glad we made. Take care. (See why I don't post here too often?!) :O)

~Tina, bpmom@comcast.net, Mom to Nicole (7 y.o. w/LOBPI) & Joshua (23 mos. w/NOBPI)

WARNING - long -

Until a LONG RANGE - TOTAL BODY IMPACT STUDY - had been undertaken...
NO DOCTOR or PARENT can predict what pain level or secondary injuries an OBPI child will have.

It is to early for anyone to say their child will never have the pain.
No doctor can or should make that statement because they have no studies to back it up.
Most doctors have never met someone with obpi, therefore, they are no qualified to predict the future.
Until a study is undertaken and these physicians have studies in hand to back up their statements they are just guessing.


No one knows the future of the OBPI child... the parents can do their best to research and then support their children to develop in to well rounded people.
The adult/obpi can speak out and say that perhaps we can find better ways of treating the kids so they don't suffer from secondary issues as they age.

Age does not mean that you automatically have pain.
BPI with years of compensation will bring with it overuse and secondary injuries.
Perhaps with some changes in the medical care and some surgery to correct the muscle imbalances and shoulder problems things will be different in their future.

I grew up being treated as a normal child. My arm was not the focus of my parents life at least that is what I thought.
Yet now that I am an adult and look back I realize that all the playing and games were geared toward obtaining better range of motion and muscle and hand strength.
I was never given piety and never thought my parents thought I was less than any of the other children. I am the youngest of 8.
I spent the first 60 yeas of my life not speaking about my injury and pretending it was not there...
Until I had to pay the price for compensation.
I was forced to retire from work as was Carolyn and a host of other adult/obpi I know.
We did not just sit around and feel sorry for ourselves we lived full normal lives and suffer from a benign medical neglect due to the lack of information on aging and bpi.
I attended the NIH Disabilities across the Lifespan conference in Washington DC.
Our injuries and overuse can be compared to post polio syndrome.

I have no doubt in my mind that My Mother did a perfect job at giving me a normal life.

I wish I could say that dealing with the secondary injuries is easy but it is not!
I am fortunate because the doctors I deal with now have been open enough to LISTEN to me.
They have ordered the proper testing and have connected many of my health issues to my initial birth injury.
Including the false diagnosis of Asthma... it's a diaphragm problem.

To the best of my knowledge my injury is considered severe...
I always thought is was mild - that's what many doctors said (should I say guessed) when they saw my arm.
I guess my Mother did her job well.
C4,c5,c6,c7,c8 & T1 are involved and one bright white spot in my spinal cord...


I am ticked off now that I am paying once again for a doctors mistake.
I don't dwell on it and I am way to busy to sit and have a piety party.
Besides I learned along time ago... it would be a waste of my valuable time.
I choose instead to work for prevention, support and Awareness.

This post has taken many turns and I have at times been upset by the comments.

Rachel is reflecting the feelings many OBPI adults will admit to having had at her age.
Her parents of course think they took the best course of action for their child.
I am sure all parents who love their children feel that way.

Knowledge is the key to wisdom and understanding.
Studying all the current data on bpi would help ...
All injuries heal in a different way because of the way the nerves grow.
I have the same nerves injured as some of my adult/obpi friends but we healed differently and gained or lost different functions.

I hope Rachel and her parents will take the opportunity to come to camp with us in 2007 it is such an eye opening experience.
It is one that they will treasure because of the wonderful people who attend camp and make it special.

I have had an opportunity to meet hundreds of families.
I would be remiss if I did not share my view of the bpi families I have met over the past 6 years.

I had the pleasure of helping run the Injuredonly workshop at Camp 2003 & 2005.
These kids are normal, funny, determined, smart, strong, well mannered NORMAL children.
I did not meet pampered, spoiled or overprotected children who are given a great deal of piety.
One of the things most bpi parents know for sure is that BPI children are strong willed, persistent and determined.
They must be to move or accomplish the things that the "normal" child can do.
They must also be creative and be able to think outside the box.

Believe me I totally enjoyed the kids and their parents and found that no matter how the parents may fall apart on the boards once in awhile...
They are NOT doing it in front of their children.

My children were not really aware of my injury.
They knew I could not play patty cake or eat with my right hand.
They also knew I drove them everywhere played with them.
I even learned to toss a Lacrosse ball with my son when my husband was away on business.
They think I am perfectly normal, do way to many crafts and that there is nothing wrong with me.
My husband never really notice my arm but now he has to do many of my tasks due to secondary injuries.
He feels bad because he knows I am so independent and this frustrates me when I can't garden anymore or carry groceries...
He understands that these are secondary injuries and at times felt bad because he did not prevent them....
But he also knows I am stubborn and determined and he would never dare take something out of my hands or do anything for me I could do myself.

I am glad we can provide a space for people to hold discussions like this one, it is helpful to everyone.

Kath ( robpi/adult)

Rachel:

I've been watching this post grow to record proportions and have thought to myself that I should offer up something of my perspective also. So here goes.

Although the responses have varied somewhat I think the subject of your original post is: "so what's the big deal?" and I think coming from some injured adults that is an understandable position. However, Rachel, I think not being an OBPI parent and, in all due respect, 23 years young, you're not fully seeing the realities experienced by OBPI parents.

When I was growing up 60 years ago and throughout my adult life "no big deal" was my opinion also. As a child, I was told that my arm was hurt when I was born and "go back outside and play". It was no big deal to my parents – or so I thought. It wasn't until I started reading the posts of OBPI parents on the message boards that I realized that something else might have been going on with my parents that I wasn't really aware of. So, I started talking about my injury with my Mother who was 94 at the time (she is 97 now). I did this slowly and privately because after reading of the anguish and concerns of OBPI parents, I didn't know how she would respond to this memory.

I learned that, like other parents that have posted on these boards, my parents were devastated by my injury. Tears came to my Mother's eyes when she talked of my difficult birth and the first couple of months after. How the doctor left right after my delivery because he needed to catch a train to San Francisco and never explained what happened. How my Father was very angry that I might live "as a cripple" and he wanted to give the doctor a good beating and, knowing him, he just might have. However, they soon put their anger aside and started to work on what was needed to help me. They found a pediatrician who had some familiarity with the injury and referred them to a PT clinic. For 12 years my Mother took me to physical therapy sessions. These were supplemented by exercises on the dining room table whether I liked it or not. My Mother still grasps my arm and asks me "Did we do enough?" and I always answer "Yes" because it is true. The sacrifices of my parents and other family members cannot be overstated. The monetary sacrifice was significant because in those days no medical insurance was available to offset the medical costs. They borrowed money from my Grandparents for the PT sessions and later for the surgery when I was 13. I believe it was no accident that we didn't have a car or TV like our neighbors until I was in high school and my treatments were completed. However, if the prospects for my future and the issues of treatments, money, etc. were of concern to them, they were not apparent to me. I grew up as a normal kid, supported by my parents in anything I wanted to try, and figured out what I could and couldn't do.

So, I believe the anguish and need for support by parents posting on this board are very real and justified. As these boards indicate, some parents feel guilty for their child's injury and the years of surgery, therapy, and pain. They're good at concealing their anguish from their child, as my parents did, but some openly express their concerns as we see in the boards and value the support of other parents who have endured the same challenges. The Dr. Phil episode, as dramatized as it was, illustrated how this injury can affect the total family and requires strong parental and sibling relationships to get past the most difficult times. Did you notice how the Mom tried to discuss how the injury to her son was preventable, that it didn't need to happen? Unfortunately, that message didn't get past the editing as much as she wanted it to.

There was an excellent discussion of the issues of growing up with this injury during one of the Camp 2005 seminars last September. The panelists included men and women who ranged in age from teenager to senior. The exchanges between parents and the OBPI adults brought insight to handling situations like parenting the injured child, youth sports, working with teachers, career choices, raising children as an OBPI mother, and what to expect in the later years of life. Some advice to OBPI parents was offered at the end of the discussion and I'll repeat it here:
1. Love your child with all your being.
2. Be prepared to sacrifice your time, effort, and money to ensure your child improves to the maximum extent possible. This may mean unintended sacrifices to your other non OBPI children.
3. Treat your OBPI child as you treat your other children; with love and respect without undue attention to their injury.
4. Encourage your child when they want to participate in activities with their friends including activities that may be physically challenging to them because of their injury.
5. Ensure your child receives the education and training that will enable them to lead a productive life.
6. Prepare yourself for an emotional roller coaster for yourself and your child, remembering that, in the end, you and your child will learn to cope with the injury. How well your child copes will likely be influenced by how well you do.

Judging from your responses in this thread, your parents have done all of the above to help you with your injury. You are very fortunate.

John P.
(ROBPI for 67 years)

anyone gettn dizzy from going around in circles???
only joking! i enjoy reading everyones perspectives!

WOW, John P.
You just said eveything that I have been trying to say this whole post. You have the right perspective for most of us Parents. I hope my son never finds out how hard it was for me and my husband as we struggled as newly weds with three other children(from my other marriage) on military pay at that. I think he would be upset that we struggled to make him what he was today when in his eyes his arm is like anyone elses. I think you understand completely the whole effect of BPI on the family it affects not only the injured and the parents but the whole family. None of my children resent their little brother, they were helping with the OT and PT along the way....my 18 year old was determined that Brandon would play baseball with him !!! LOL They loved their little "VACATIONS" when we went to see my son's surgeons. I just want to say thank you ~ !!!! Gayle Mom of Brandon 7 1/2 ROBPI !!

OK - I'm joining back in! John - I always love to hear from you!! Tina - thank goodness I got a cup of tea before reading yours but I trully always love to hear from you because I know that you must be an awesome MOM, caring..... give great replies that are helpful - but you just like to talk!! LOL LOL
Carrie and Rachel - you both said something that struck me hard. After seeing many doctors, one hospital and surgeons there thought Brittney needed surgery. I'll never forget HER response, at almost 9 years old, she said, "Would that mean 'if I got surgery' that I would not be SPECIAL anymore?" She was so against surgery! She wasn't scared - but didn't want to change who she was! I do not mean to offend anyone with that extremly difficult decission - ...we all do what is right for our kids.... But my daughter's response was odd to me - after all of the therapy, e-stim, casting at night, everything we'd tried for so many years to help her - and so on - surgery would make her not special anymore?? I realized that alot of what I put her thru was because I felt guilty for letting something happen to her - and she was just fine being HER. My youngest child has often told me that "why did SHE get an arm injury and I didn't?" Life is so confusing for all of us. I just thought I'd share what is running thru my head right now. The kid's at Britt's school think her arm is 'cool', she likes the attention now but didn't when she was younger because the kids didn't really understand I think - now as they are older they think her arm is "cool!". Her friends all know her as Brittney - the kid who is fast, athletic, loves pink and flamingos!! and a great friend, and yep her arm is alittle different and so what! She is fine with who she is and the friends that are close to her could not care less if she had an injury or not - they just like laughing and being around her because she is fun....

Everyone has an opinion here and I have really liked reading everyones opinions - it's why I love to come to these boards - to hear other people's thoughts...
Christy

HMMMM.....now i haven't read every single response on this page but from what i have seem it leaves me a little concern. Alot of you seem to be jumping all over rachel and i know she has received messages telling her to get off this website and that this is a support group, and she is unwelcome, etc. but i don't get what the big deal is. i don't get why so many of you have jumped all over her, tell her that she is rude and inconsiderate. frankly most of you are being that way. she is expressing herself saying that she is frustrated. you shouldn't hold that against her.
i guess the thing that gets to me is that most to all of the parents out there are saying that their children are or were unnesscesarily injured. why do you see it as they are injured? how are they injured? because they are a little different, and they have to do things a little differently? i wouldn't look at it as an injury. and i wouldn't treat it as such either. i think that is what rachel is trying to say. i think she is taking it as an insult that most of you say that your children are injured, instead of saying that you have a beautiful healthy child. now i also know that alot of you do not treat your child any differently. i read one response that said that she is raising her youngest child just like her older child. i take my hat off to you. if you don't want your child growing up feeling like they are different or that there is something wrong with them, then treat them normally. that is all rachel is trying to say. she is perfectly normal in my opinion and i have known her for 6 or 7 years. i have never seen anything stop her, and that is all she is hoping for for everyone who either has BP or is a parent of a child who has bp. like i said before stop looking at your child and think that you hurt them, just because they are a little different and do things differently. i can tell that all of you love your children very much but love every part of them and stop looking at what went "wrong". please treat them normal and hope that they grow up to be as strong and as successful as all the adults that have BP. don't let their difference slow them down. push them every step of the way. That is all rachel was trying to get you guys to see. So stop telling her that she is rude and that she doesn't understand because she's not a parent, she understands better than most of you parents.
Rachel: i appluade you for everything that you have done. you are one of the stongest people i know. don't ever change.

Kath, we'd better not ever get into talking on the phone or we'd have quite a LD bill! :O) I always enjoy reading your comments.

John P., you write so well and have such a great way of saying things.

I just want to remind any adults w/OBPIs not to worry about how your parents might have felt (not saying that anyone is). I know that you read about a lot of moms being very emotional and having a hard time esp. in the beginning, but it really isn't like that for all of us. At the past UBPN camp, I felt so sad hearing about how difficult it is emotionally for some of the moms and started thinking that something was wrong w/me b/c I never felt like that. I really haven't cried much except for pre and post-surgery and throughout/after the lawsuit. The dr. who spoke about PTSD told me that it's okay and that it doesn't mean that anything is wrong with me and that some people just handle these things easier. I also made a very serious effort to throw all my burdens upon God, so looking back, I'm sure He helped me a lot! Anyway, for anyone who doesn't know, your moms might have cried themselves to sleep many nights, but it's very possible too that they didn't cry much at all.

Thanks, Christy. I hope I didn't offend anyone b/c I opened up and shared more of my feelings than I have in the past and really didn't mean to hurt anyone's feelings. If I did, I hope they will let me know. I love hearing about Brittney as well and all of her accomplishments. Someday we'll meet. BTW, about the sibling with no injury issues, Nicole was worried for her unborn baby sibling when I was preg. b/c she was afraid that he would get injured. Sooo, that was my que to explain to her where she came from and where he would come from (I had a c-s with him). We haven't gotten into the whole other discussion yet, but I think I'm going to have to brave that one out soon too. :O)

~Tina

Traci, ...I posted a new post just for you. You as a new soon to be mom, deserve your own Topic Thread!
Hugs, Carolyn J

I have been reading this thread since it has started and wasnt sure about commenting on it... but here goes...

EVERYONE IS DIFFERNT AND ENTITLED TO THEIR OPINION!

I am TBPI so in a sense it might be different for me. I will be 26 next moth and was injured just after my 21st birthday! I have had two surgeries, did formal PT for 3 years OT for 6 months and water therapy for 6 months! I am going the end of next month for a fourth opinion for yet another surgery. I want to "fix" my arm! I know life with two arms (you and I will differ there), I was a very active person, and there are some things that I just can't do and to be honest it really PISSES me off sometimes! Don't get me wrong, I am vey well adjusted and have learned to do thing differently. I love my life and at times wouldnt change it for the world. But what would I give to have my arm back, I would give everything I have! It is hard to go from life with 2 "normal" arms to life with one that doesn't do much of anything! It's beyond frusterating!! Again OBPI and TBPI will definitly differ here too!

I think that each person, parent ot injured person, has every right to feel any way that they want to! Some people naturally deal with things differently than iothers and who are we to tell them what they did or are doing is wrong?? Let's be considerate of each other here.

Rachel, you are entitled to your feelings but it really is unfair of you to come here and say that these parents are doing wrong, thinking and feeling wrong. You dont even know them.

As far as Lisa from the Dr. Phil show... she is BRILLIANT person, mother, wife, and is very passiomate about prevention! I hate for you to think that she is "out there" based on what you saw on TV. Maybe you shoul;d try and meet up with her and see what exactly she is all about. She does not want this to happen to any more babies, as many people here. It is a injury, it is preventable, and it needs to be stopped! Lisa is trying to help with this. If you see that as "dwelling over the injury and hurting her child" I think maybe you should take a step back and look at the big picture. Its ok for peop;le to deal differemtly than you have, god knows everyone does.

Im glad that you have found your way to this site, use it as a resource... and please be accepting of other opinions.

Courtney 25 TBPI