Just found this website

[McKenzie's Mom]

I've just started researching BPI again and stumbled upon this message board and could have cried. I have felt like I was the only mother dealing with BPI and have been torn apart with guilt for having caused this for my daughter and not being able to fix it! She is almost 8 years old and has recently come to me crying wanting to know why we keep forcing her into physical therapy and making her do arm exercises and stretching and why can't she just be like everybody else. I just broke down in tears. I want her to be just like everybody else, but I also want her to gain full use of her arm. We've been to multiple doctors and apparently have seen one of the best Pediatric Orthopaedist at Children's Hospital in Seattle, WA and they just keep telling us the same thing....keep stretching, keep exercising. They have never suggested surgery as an option and now I fear it is too late. Right now we've stopped all physical therapy to give my daughter a break, but I'm afraid we'll start slipping backwards if we don't do something. I am so angry and sad this has happened to her and I can't get past feeling like I should have been able to prevent it. Now I just want it fixed, but nobody is giving us much hope of that. Thank you for letting me vent my anger and frustration and I know we will get through this and she will be fine. If there is anybody with more information on what we might be able to do for our daughter I would really appreciate it right now.

[admin]

Mckenzies Mom,
First I want to say, you did not cause this injury.
Second I want to say, you did not cause this injury.

There are many strong mothers and fathers of children with this injury, and adults with this injury on this board. They will have some great advice for you (I'm still relying on them too).

I'm glad you have found this place, ask may questions, you will find answers.

Julie

[admin]

Thank you for your support. My other daughter is named Morgan and I call them my M&M's all the time!! I will continue to research until my daughter is 100% better or until we (her and I) can come to terms with this disability and accept her limitations, but for now I'm not ready to do that so the search for answers continues.

[PeggyF]

McKenzie's mom,

I live in Belfair, WA. Are you in the area?

I'm just about to leave to bring my children to school, but I would be happy to talk with you when I get back (should be around 10:30)

Peggy

[admin]

Thank you so much for your kind words. Intellectually I know this is not my fault, but emotionally I blame myself. I injured my tailbone during at the same time and after 7 years finally had it removed, but it is still painful to sit. So there is a constant daily reminder for the both of us that this happened. I will continue to research and hopefully find peace with the situation regardless of the outcome.

[Chloesmom]

It is not your fault
It is not your fault
It is not your fault

You must believe that. Welcome to the boards. I am a new mom and I was lucky enough to find these boards early. If you are interested in finding out surgury options i recommend speaking with or emailing Dr. Nath. He has done amazing things with surgury and can give an answer via video evaluation about surgery. Go to http://www.drnathbrachialplexus.com for more info.

Good luck

[dmom]

I second every word Chloesmom said!

And I'd reiterate ... this injury is never the mother's fault. It's a physical impossibility for it to be the mother's fault!

We all struggle with that false guilt, but it is FALSE guilt. Please don't beat yourself up.

Janet

[admin]

I feel like i am the only person to have come out of my daughter's delivery with an injury to my back/tailbone! Please write me back! In fact my right leg has now started to go numb on me & I fell down the steps today! I'm fine...just ticked!

[Angela Butterfly]

Dear KC, I am Angela, mom to 3 daughters (born in as many years- All were TEENAGERS and in High School at the same time). My youngest was born SEVERE Left Obstrictal Brachial Injured= LOBPI. Jill is now age 21, and has never had any surgery. She was SO SEVERE, I was told for certain her nerves just had to be evulsed from the spine. In fact I was told this by 3 different specialists, at 3 different hospitals, by the time she was 6 weeks old. They were wrong.

I posted in two entries about her, on page 4 & 5 of the following thread is entitled "Who has not had Surgical Intervention. It has a lot of posts, and might be too much for you right now, as you are getting a FLOOD of info all at once. http://ubpn.org/messageboard/thread ... msRange=15

What you are now going through with your 8 year old, is much like what I went through. We ALL grow tired of the therapy, and splints and doctors and therapists. Angry too.

Jill never did get 100%. I remember I hated the word FUNCTIONAL.....I wanted better than FUNCTIONAL. Now all these years later, I and she are happy (well O.K.) with functional.

Jill could not take piano lessons, like her 2 sisters, so I got her private art lessons. Now Jill is a Senior in College to become a K-12 Art Teacher. It is a profession I hope she can manage with her injury. It was her decision to become an art teacher. In early High School, she wanted to become a Doctor, like her two older sisters wanted to be (one is almost a Vet Doctor - the other changed her major). Then as a Junior in High School, Jill changed it to Art Teacher......I knew in my heart that was best for Jill too. I had to call the school to let her take art classes (they kept bumping her out of them, because they only had one art teacher and too many High School students wanting art classes)because she told the school guidance counselor she was going to be a Pediatrician (originally Jill wanted to help babies born like her).

I know how hard it is for you now. It was hard for me then too. HANG IN THERE. Angela

[jep98056]

McKenzie's Mom:

I live in Renton. I'm a ROBPI old enough to be McKenzie's Grand Dad so I've lived with this injury for a long time.

My parents were devastated when they learned of my injury. My Mother has told me that my Father was so angry at the delivery physician that he wanted to give him a good beating and he may have done just that. From an infant until about age 12, physical therapy was just a part of my life, at the clinic and on the dining room table, whether I liked it or not. Mother, she's 96, still gets tears in her eyes when we speak of my growing up years. She asks "Did we do enough?" and I always answer "Yes" because it is true. The recovery I made was largely due to the love, perseverance, and sacrifices of my parents and family.

I've written a couple of times in the forums about how I'd advise a parent like yourself and I'll repeat it here. Love your child with all your being because she'll need your support to deal with her injury. Be prepared to sacrifice your time, effort, and money to ensure McKenzie achieves the maximum possible recovery. Treat her as you do your other children, with love and respect, without undue attention to her injury. Encourage her when she wants to participate in activities that may be physically challenging. Ensure that she receives the education and training that will enable her to live a productive life. Prepare yourself for an emotional roller coaster for yourself and McKenzie, remembering that, in the end, both you and McKenzie will learn to cope with the injury. How well she copes will likely be influenced by how well you do.

I sincerely hope this is helpful to you. Feel free to contact me.

John P.
66, ROBPI