United Brachial Plexus Network, Inc.

Am I all alone? Is there anyone else that is okay with BPI? Do any of you think that it could have been worse? Yes, it is preventable most of the time. But do you ever feel like we are putting our children through too much? Why not just teach them how to live and be okay with one functioning arm. People that have far less, and many more problems do it everyday. Just looking for some personal opinions.

Interesting thoughts.

Well, I can only answer for myself.
Obviously, I am ok with my obpi, it is all I have ever known. But it is a challenge to live with, and that challenge changes as we age.

However, I want a better life for myself, and am always interested in new treatments, new therapies, new ways of doing things better.

I want a better life for the children with this injury.

And above all, I want this to STOP happening at the same rate as it did when I was born, 52 years ago.

Nancy Birk
UBPN President

I AM TOTALLY OKAY WITH THE BPI. MY CHILD AND I ALMOST DIED DURING DELIVERY. SO WHEN SHE WAS ABOUT THREE YEARS OLD I REALIZED THAT HER ARM WOULD ALWAYS BE A BIT WEIRD. We have taken that injury in context. Our child is not dead, and that child's future is really still extremely vast. I worry about the real threats to my child's life:

Since the first days of my child's public kindergarden days, her teacher is presuming a very authoriative role over my child with regard to discipline and conformity... The school system is an incredible horror... THERE IS LEAD PAINT IN HER SCHOOL, WE RECEIVE REPORTS FROM OUR TOWN THAT OUR WATER IS UNDRINKABLE, OUR COUNTRY HAS BEEN AT WAR SINCE SHE WAS BORN, GLOBAL WARMING IS DEMONSTRATING ITSELF IN THESE MERE PAST 24 MONTHS ALL OVER THE WORLD WITH THOUSANDS OF DEATHS AND MILLIONS HOMELESS, COUNTRIES CANNOT COOPERATE TO HELP THE INTENSE NEEDY. And in our economy of capitalism, hundreds of thousands of people are being robbed of their worth, their contribution...

AM I WORRIED ABOUT THE BPI? NO! I worry about all children that will inherit this earth in just the next fifty years.

My oldest granddaughter is 3 years old, has lobpi, had two surgeries (primary and mod quad) by the time she turned one year old and has had physical therapy, occupational therapy, aqua therapy, and taken kindermusic, gymnastics, swim lessons, and dance all in order to encourage her to use her arm as much as possible. Her injury was severe, but with the surgery, therapy, and other activities, she has made wonderful progress and at this point, most people cannot tell that anything is wrong with her arm. So, my personal opinion is "no," her parents did not put her through too much. Because she had her surgeries so early, she does not remember them. She never seemed to resent her therapy and at 3 years of age, she often will proudly tell us "look, see how I can lift up my arm." Up to the age of one year, my granddaughter was esentially one-armed; today 2 and a half years later, she is using both arms. Maybe, we were just lucky, but I feel that when my granddaughter is older, she will thank her parents for taking advantage of the new knowledge and technology that the medical field has made in the last decade for bpi children.

My daughter does live a one-armed life. I esepcially had her trained in therapy to be able to accomplish everything one-handed and she amazingly does. But our life is still inundated with bpi stuff because her joints are not in good shape and we have to keep on working out those issues so that hopefully when she's older she'll have less problems then if we did nothing about it.

My daughter has many secondary problems since her birth and we have to work on those problems daily and there's no getting away from them (diaphragm weakness, hypotonia, lordosis, toeing in, etc.) We found that when we took too much time off that it came back to bite us so now we try to have a healthy mix as we navigate around surgeries, etc.

I guess it all depends on what issues your child has. It's not the same for all of us. Some have more issues some have less. I'd do anything if we could erase all the secondary issues, then we'd be in really good shape. I guess it could have been worse, and I'm certainly extremely thankful her brain is functioning perfectly. But again, if we don't stay on top of all of these issues, her adult life will be chock full of secondary issues to her secondary issues.

I do teach her how to live and be ok with it. Her therapy comes to her as different group activities that she chose herself and they are chock full of therapy benefit. One of the most important things has been to get her in a pool every day.

Of course it could have been worse. Children are dying everyday from heart problems, brain tumors, cancer, and some are still born. Anything that hurts a child and takes away their chance to live life or to live a "normal" life is very sad.
It's been 4 years and I have learned how to make it all "okay" now. I never once said, "oh well, too bad, it's over and done with so I may as well just deal with it." My belief and my feelings are far from that type of thinking. I do cope well today. For a long while I didn't know how to. I have leaned what makes me feel better. Things like talking to other parents who know how I feel, writing my feelings on paper, creating my Web site and support group, and my everyday postings on different BPI boards help me. Those things have taught me that the world is not ending, but this is something that I HAVE to live with. It is something that will affect my child for the rest of her life so why should I act as if nothing is there and wrong. There is something there that shouldn't be and things are not perfect. The one thing that is perfect is the way out daughter is treated. She is treated like any other child her age. This makes me happy. I don't put her through "too much" in my opinion of our situation. I do the necessary things to help her. When she is older I want her to know that mommy and daddy did everything they could to help her. I want her to know that she was a happy child and never treated differently than another. BUT I do make sure we do daily therapy here at home. I make sure she goes to her BPI specialist as needed. I make sure her formal PT is productive. In all of the above situations, it is a necessity.
And yes, this injury IS preventable and that is what still drives me crazy. I WOULD NEVER try to teach my daughter how to live with ONE functioning arm when she has two arms. Two arms that SHOULD HAVE BEEN PERFECT! I do what I can to make the injured arm work as the uninjured arm does. That is what I am here for. She can't do it alone at 4 years old. When she is old enough to take things into her own hands I will let her. Since birth my goal was to get her injured arm better. Why would I spend my day trying to teach her how to use just one arm when I can use that time more wisely and teach her how to use her injured arm better so she can have two arms back? Thats just the way I see things. People do have far less. And the babies with no injury have far more in many cases. I make more out of our less. What I have been through (and many other moms) these past 4 years has been something that no mother should have to go through when something that causes it IS preventable. I guess making more out of our less, well...That's how I deal.
~Krista~

I am very glad my mother did not teach me how to live with one arm.
She had two good arms and had no idea how it would be to live without both arms functioning.

She taught me to function at my highest level and gave each of my hands assigned tasks according to my ability to function.
I forget I have and arm but still do the tasks assigned to my robpi arm without thinking any more. The only time I use my arm is for those functions otherwise I just don't remember to use it.

She taught me to accept myself for who I am and to persevere in spite of my many limitations.
I always knew the only thing that could limit me was me.
It is one thing to accept a child for who they are and love them without reservation.
I feel if she had limited me, by keeping me one handed I would have been cheated.

Because of my age I am well aware of the stress and secondary injuries this injury has left me with.
Overuse of our unaffected arm is a major problem for those of us who have spent our life operating "almost one handed."
It would have been much worse if it had not been for my Mothers constant care and help.

Accepting me and loving me was never and issue.
She loved me enough to fight with me to move.
She enabled me and never disabled me.
She built my self esteem by teaching me that I could do anything I wanted to do, as long as I tried.
I never felt as if my arm was the major focus of our lives .
I know now that I am a parent and grandparent how much my mother had to make my care a focus of her life.
She made it so easy, I never realized all of the work and patience it took to teach me to move.
I was always treated as a normal child the same as my sibling except I had to do more work...
Only because I refused to do PT so housework was her option.

I never gave up hope that I might have more function someday and I would not want to see a parent give up on their children.
I hope someday bpi injury is no longer a problem and that children's function can be fully restored.

Kath ( adult/obpi 65)

I wish I didn't have to teach Javier how to do everything one handed, but I do. He has has primary and we are still waiting to see all that it will give him. OT, PT, ROM and playing. He is very aware of his right arm, it just doesn't work. He doesn't get so frustrated anymore, I believe because I show him how to do things with one hand. We work HARD to include his right arm, but when he is just being a boy and playing, I let him play. I know that in time, he will figure out HIS way to do it.

MArlyn

Marlyn
You are right he needs to play and just be a boy.
I did not have any function for so long...

I hope someday he will get some function.
I hope my post did not upset you.
Each parent has to work with with the individual injury of their child.

I feel if there is any function at all it should be used as best as child can.

I gained more movement as I matured...
I had very little function even at the age of 5.

Kath

Krista,
The reason to teach a child to use one arm like we did is because she had very little function in the arm with the bpi and it was exceptionally frustrating for her. When she actually learned that things could be done one armed it was like a light bulb went off. It was like "you mean I can actually do things one armed and things don't have to be done two-armed all the time?" meaning, I can stop being frustrated now? It brought her freedom. It reduced her stress. It made her almost immediately capable of doing the things she's been fighting to do for a long time. It made her immediately independent just after a couple of OT sessions. It was a mind blower. So, if a child has enough function to be able to use both hands then that's great. But if the function is so limited and it's really hard and frustrating, then why not learn how to do life one-handed? Not meant to offend you but it's just the difference between what life is like for children with different functional capabilities.