Experimental surgery?

[jennyb]

I have a flail arm and declined surgery. I have never regretted that decision for an instant. I am tbpi but never for a moment do I consider that my quality of life has been compromised, I honestly can't see how my life could be better with my other arm. Different, yes. I am not just an arm!
The very first bpi surgeries were abandoned because the death rate was too high, this was WAY before Gilbert and Tassin. So when they did their early work it is possible there was some relief in the non surgical group. I'm glad I was in the non surgical village, I wasn't afraid of dying, I WAS afraid of post surgical problems, more pain and heavy scarring, plus lengthy periods of recovery when, as a young person, I felt I would be missing out on life.

Of course it's MUCH easier to make such decisions for oneself than for one's child, I don't envy any of you guys. But it does upset me that flail arms are regarded with such terror and fear, and I don't like the implication that the non surgical approach means a parent isn't doing the best for their child. I definitely consider I did the best for myself! As far as I know none of the obpi adults posting here had surgery as babies, they all seem fine to me. I truly hope ALL the children go on to have as good a life as I have, with or without recovery/surgery. It takes guts to put oneself or one's child through surgery and it takes guts not to. Let us respect BOTH decisions.

[Karen Hillyer]

HEAR HEAR
well said Jenny - one of the things that does concern me is that in my opinion some parents ( not just on this board but world wide) seem to think that this injury is the end of the world - it is a devastating thing to happen to any child, but it certainly isn't the worst thing that can happen, children can and do live a perfectly normal life with a paralysed arm, they just live it differently to people with two working arms.
I would hate my son to think that he was somehow inadequate or less valuable to me because he has a minor imperfection. After all, I would hate it if he thought that about me because of my poor eyesight.
Every family will have a different idea of what is right for their child and their family.
Just my opinion !
Karen

[francine]

Karen,

With all due respect, I think cultural differences are showing now... so before we go making so many judgement calls let's just take a breather.

Things are different in the USA then they are in the UK. In the USA, parents have to deal with the aspect of negligence, denial, misinformation, insurance hassles, referral hassles, therapy issues, social issues and the legal system. According to what you have written about the UK - we have a very different experience.

I don't think that ANYONE views their children with bpi as being any less of a person than any other child. We do go through sadness and grieving initially and throughout their growing years - but in time and experience and wisdom, that shifts.

It takes TIME to figure it all out and mature with the process. TIME. I'm sure you didn't have it all worked out in your mind when it happened, did you?

respectfully,
francine

[Karen Hillyer]

Judy
Many thanks for your insight, you are quite right many of the children in our group are about 14 years and under, so they may not have started to experience pain yet, I am aware that in older people with obpi there is quite a lot of pain associated with the injury and also possibly the natural aging process, when everyone's joints become more prone to "seizing up"
Sorry, I did not mean to imply that the children don't suffer pain, simply that very few in our group report that they suffer from it.
We can only hope that with greater knowledge of treatments available and also improved therapy available to children we can avoid them feeling pain for as long as possible.
Forgive me if I offended you Judy, it certainly wasn't my intention.
I thought that some parents may feel reassured that a lot of children do have this injury but don't necessarilly suffer pain from it.
Thanks again, for picking my point up.
Best wishes
Karen

[francine]

PS - THIS is the place that people come to gain support so that they CAN create the wisdom necessary to understand and move on. We all need to allow everyone to share their views- even as they figure it out. I'm sure that what you write today is much different then what you would have written on here two years ago- I know I'm much different now.

[Karen Hillyer]

Francine
You are quite correct in that it does take time to come to terms with this injury and it was only my intention to share a different perspective and voice an opinion.
I am sorry if I didn't make myself clear about how parents view their child, I did not mean to imply that anyone held this point of view, the point I wanted to make, but wasn't clear on, is that as the parent of an older child I worry about how HE views my opinion
of his injury, I worry that he might think that I opted for surgery because I was diappointed/displeased/upset that he was not perfect.
Of course I feel all of those feelings, I am parent after all, and of course I worry about him coping in the world.
But I would never forgive myself if he ever picked up on those feelings and thought that he wasn't good enough.
I still don't think I am making myself clear, and for that I apologize, sometimes the written word just isn't good enough to convey a meaning ( or my grasp of it isn't!)
We do face similar frustrations obtaining treatment for our children over here too, all medical treatment and procedures are free of charge, but the NHS is suffering from serious underfunding in many areas and so we have to fight for therapy and treatments too, so I do understand the frustrations of parents, after all no matter what our opinions about surgery ( and I for one am pro surgery for my child) we all want the best for our children.
best wishes
karen

[francine]

You know Karen - sometimes we can have all the best intentions and our kids still go on their own path and lay blame ..... hey that's the job of a teenager... my eldest is almost 21 and when I talk with her and I see how she misinterpreted things as she grew up and created her own story about it, it was sometimes shocking. We can only try our best and hopefully lines of communication stay open and clear so that as things pop up we can sit down and talk about it. It'll be interesting to see what Maia will do as a rebellious teenager.... "Mom - you didn't do anything to support me!!" oh yea - can't wait to hear that one! LOL I know it'll come.

[Kathleen]

Francine

I have two replys... but hey mom you did not support me... sorry to say rings a bell...

I am the youngest and was the stongest of all the kids...

When I was a teenager I told my mom that she never understood how I felt when kids made fun of me and how she never cried with me... She use to say " You can sit in the corner and cry or you can get up and show them that you can do anything you want to."

I got that back between the eyes....

She told me " Kathleen if I ever started to cry with you we would both never stop" She told me she did not have time she had too much to do to make me strong and keep me moveing... needless to say that was a first and last time I ever thought she did not understand or care... about my arm that is... LOL...

Thanks for reminding me how it felt to be a teenager...LOL... pass my rock and roll music so I can play it loud... LOL...
Kath

[Nettie]

A parent is a parent world wide. I see no differences. To say that we feel differently as parents because we are from the UK or USA or wherever is ludicrous. What Karen was saying, I think, correct me Karen if I am wrong, is that in the grand scheme of things, it is an arm that is with limited function and it could be alot worse. We can live with only one arm. If we spend our entire life worrying about how our kids feel we parented them, then we are wasting alot of years for naught. Someday they will be parents and the world is clearer, in the meantime, we do the best we can with the resources we have. They are no guarantees. I am tucking away my soapbox for now.

[admin]

I think that experimental is a big word. I feel that the doctor's that delivered my son were experimenting on me, using me as a guinea pig. Yes, it is only an arm, but it is still an arm. We can't just say that it is okay because it is only an arm. I was only a patient that warned the doctors about shoulder dystocia, but they refused to listen. They experimented with my babies life WITHOUT MY PERMISSION so therefore I must "EXPERIMENT" and see what I can do to make his life as Comfortable as possible. When my mom was dying the doctors gave her 3 months to live without this experimental new cancer treatment. She decided that the experiment was worth a try, I was three months from being married and she didn't want to miss her baby getting married . She lived a year and half of productive life, saw me get married and saw her first Grandson born and saw his first birthday. Six months later she passes away. What a gift that "EXPERIMENT" was to her.....that is why "EXPERIMENTS" tend to get me. They gave her life that we never thought she would see. THANK GOD FOR EXPERIMENTS !!!!