United Brachial Plexus Network, Inc.

Kathleen you raised an interesting question on the other post. I've always wondered about the pain involved and Michaela has always seemed to have a VERY high tolerance to ANY type of pain. She'd rather have the pain than take the medicine as a normal rule! I've often wondered if it may be because she had so much pain from the start(during birth and right after) that she may be used to it. Doesn't know life without it if you know what I mean? She started life with a severe BPI and 3 broken ribs, took 20 minutes to resuscitate her, and because of that all her organs had already started shutting down (intestines,kidneys,etc.) and she has Horner's Syndrome. With such a severe injury, how can we know till they get older,what other things are affected. If pain is the norm for the child do they think it is normal till they are old enough to realize it isn't? It's alot to think about! LeeAnne

I forgot to add, the nurses and doctor in the NICU, where Michaela was for 10days after her birth, couldn't figure out why she cried all the time too. Her 3rd day here on earth they did a chest X-ray because she ahd pneumonia and that's when they found the broken ribs and said no wonder she's crying all the time. Took 3 whole Days!!! She also had low blood sugars, it took awhile for her pancreas to start working on it's own because I'm insulin dependent diabetic. With all that went wrong and for the BPI to be the only known residual problem,you can see why she's my miracle. I hate to think about the pain,it has to be there.

I'm not Kath, but I do have part of an answer, while I can't ever remember being in a lot of pain as a child I was always aware that there was a feeling difference, I am always aware that one arm is very different, it's like a sharp stained feeling all the time, like if you threw a football very hard or had a tetanus shot, only with an edge. However, moving can be very painful at times, especially post-op. Also, the day after having rotator cuff surgery I stopped taking all meds. The pain was easier than the effects of the medicine, I took ibuprophen from when I was eight until about 6 months ago on a regular basis, about 12 years. I kept building up a resistance to its effects and so I was taking 800 mg at a time, that dosage and amount seemed to change my Seratonin levels and I was very depressed. Coming off the drug helped a lot, but now I don't take anything. My pain tolerance is pretty damned high, but when I have pain other places, not my bpi shoulder, my tolerance is way down. I think this is because its added pain to what is constant because of the brachial plexus injury and its effects. I hope I'm not just rambling, anyway, I don't believe in drugs anyway, so it's just easier, if she doesn't want to take them, please dont make her, I always felt sort of dependent.

Carrie hit it right on the head... Except she is so much younger they put her on pain meds... but again as I can see they were not for her... and did not help her pain...
I also have a very high pain threshold....
One of the things I have learned in the past two and a half years is that I am not the only adult/obpi with pain...We have always had pain... we know no other way....The pain was denied by the medical profession to our parents... before we had words to describe it....Therefore, PAIN DENIED DOES NOT EXIST.......until something happens and we begin to speak up....
Two years ago I became keenly aware of the amount of pain I was in I could no longer tolerate it. I went from doctor to doctor with no real answer. They did not address the fact that it was overuse damage to the "unaffected arm" I was overusing the affected by many compensations that were damaging.... so I finally consented to take Vioxx... I nevertake any sort of drug if I can help it... I just don't want them.I hate all side effects. One day on Vioxx. and I was Amazed! My first impression on the second day... "Wow so this is what it feels like to have no pain" I was shocked never in my life did I ever feel so pain free it did not last long because I began to swell up and had to stop... so I only had a bout three/four days pain free... It took time for me to adjust again to my NORMAL... but I did.... Pain has always been part of my life...
Kath

Kathleen and Carrie are both correct. Even though I am TBPI pain is a factor for all of us. Your tolerence has to increase or you could not function. Does the pain go away? NO!! You just become better at ignoring it. This is going to sound odd but... I can usually tell what kind of day I am having by the look on my husbands face when he gets home from work. I may think I am hiding the pain well, even from myself, but I have yet to be able to truly hide it from him. He will look at me and say, "Bad day, huh." He will be right. Here I have spent the day ignoring my pain and he can see right away that it is effecting me. Not sure I like someone knowing me that well! LOL

Anyway, it sounds like Michaela is ahead of the game. She knows what is best for her body. She really is an amazing child. So young and so tuned into herself. I want to keep track of Ms. Michaela cause I think we are going to see great things out of her!!

Hi LeeAnn, I'm not Kath either. I'm Sharon 54 left obpi. I have found that most generally I can tollerate the left arm pain (high tollerance??? or just used to it????) Unless I over due using it. What is hard to deal with are the many issues that come from the compensation we must due. You add one pain upon another and another and all of a sudden no pain goes away and you/I cannot deal with any of the pain. Of course the older I get the more I cannot use my left arm and therefor more pain trying to use it.

Don't know if this helps but I do lurk around the general board. Peace
Sharon

Hi I am Kath... LOL...
Sharon and Carrie I am glad I am not the only adult/obpi to post on general board... I hate being the only voice... because I can only relate to my own experience and those shared with other adult/obpi... so it is good that you guys share too....

The pain issues and the obpi newborn has really haunted me since I saw 20/20... I can't explain why I guess it was the first time I saw the actual injured arm... I was that baby and that hit me very hard because I never related to the fact that I must have been in pain at birth but seeing the baby brought it all into focus!

This show stirred up emotions I did not know were there.It was not until 2 years ago that I truly understood the extent of my injury. I always knew how this injury impacted every area of my life and how with age it is once again a cause of frustration and pain. I know how to live with obpi aka Erb's.... I knew I was one of the rare birth injured... that was until two year ago when I began to research on the internet. I still feel that I have accomplished much and really worked not to ever let this injury hold me back and never thought of myself as disabled... I still don’t think of my self that way…. And when I have to admit it….it sticks in my throat…

When a person falls and gets a bpi or is in any sort of accident and has a bpi injury one of the biggest problems seems to be PAIN control... all type of medications with very little real help for bpi pain.... it is very hard to control nerve pain.....

BUT WHAT ABOUT THE PAIN THE NEWBORN IS IN?
that is what hit me the hardest during 20/20 show...
All I saw was talk about Video and doctors rights and hospital rights. Not one member of the medical staff seemed to realize/or show concern for the BABY and did not even recognize the fact that the baby is in PAIN!! The Parents have no idea until they bring the baby home and the baby is crying and fussing. They are often told there is no pain with bpi. They have cranky/unhappy babies.
I have heard that for years and they told my mom that I was not in pain.... Well I am older and I will tell anyone who cares... pain was always a part of my life... Not that I told anyone because... Pain denied... does not exist... right! No wrong.
The show focused on the video and capturing the injury... yet the focus should have been on the poor little baby in pain as a result... The real issue here is a matter of proper medical care and proper medical attention to the baby no matter how this injury occurs... And that is not addressed by the medical community....
If this is preventable I have several questions and maybe someone can answer them.
Why do families who’s babies are born with illness or blind or deaf or premature have the full resources at the hospital. This includes such thing as staff for support, pamphlets on all the possible side effects even instructions on how to adjust the age of a preemie. They have Social workers... EI.... emotional support... What to expect and when. This was never more visible to me then it is now because we had a grandchild a few months ago who was in need of special care. I was amazed and in awe of the NICU & the doctors and nurses who gave all of us extraordinary care and emotional support and the tender loving care given our entire family....

Contrast the obpi baby on 20/20 – and all obpi babies. There is absolutely no medical attention for the bpi/limp arm... no one says anything to the parent... the baby is not given proper medical care.... does anyone understand that a bpi hurts? It is trauma to the brachial plexus and that is painful and it is ignored as if it never happened. No social worker is assigned to the injured baby no on going support network.. NOTHING--- NOTHING. If this is preventable where is the on going support? This is not a minor injury and even if some will resolve no one knows that for the first few weeks or months or year. Why is there no one to advocate for the baby and the pain? Why are there no information packets on where to go for treatment what to do...when to start ROM... all of these things are missing after the birth of an obpi baby... if this is an injury that cannot be prevented as some claim why not support the parents? The parents usually don't know the baby is injured and most never heard of bpi so they don't know how if impacts the BABY until they are left alone to treat the baby and investigate this injury.

I became keenly aware when I saw that video on 20/20... That no one in the hospital cared for the baby in pain, nothing was done to comfort the baby. I felt as if I had been hit in the head with a brick. I realized that was me. That is what happened to me and that is how I was ignored for two weeks in a hospital. They did not tell my mom I was injured they said my hands were pinned to the shirt so I would not scratch my face. That was a lie but all those years ago I can almost understand, but not really. Today there is no excuse for this type of behavior and it still happens and that is sad. Sad for doctors who are wonderful caregivers and know their skill and do there jobs well. It is also sad for parents who are not prepared to deal with this injury with no support or information from the medical community....

Most of all sooooo very sad for the baby who is in pain has no voice but only has tears to express their anguish...

The hospitals need to forget about fighting the video and focus on education. They need to be sure that the staff is familiar with the maneuver's to deliver a baby safely into this world. They also need to address the real issues and this is once a baby is injured it is their responsibility to provide proper medical care from the moment of birth. They should provide information on doctors and social workers to support the young family as they start down their road with this life altering injury.... Teaching all concerned with the infant about the needs, care and comfort of the injured baby. The first is to recognize the reason for the babies tears...

Thanks for letting me VENT for my MOM when I saw the video... I wondered how she must have felt... I felt so sad for her and all the MOMS...

I was just wondering if anyone has ever asked these questions of lawyers... doctors and hospitals and what the answer or excuse is for the neglect of the baby...???
Sorry I know this is long but Lee Ann you asked for it...LOL...
I would love to know if anyone was given and explanation as to why the baby was not given proper medical treatment at the time of the injury?

I also wonder if some were given proper medical attention in the hospital or place where the baby was delivered, right after birth...

Glad to get this off my chest. Since my Mom never spoke about the doctor who injured me. I will never know her feelings towards him. She just told me what happened and how it happened but she kept her pain to herself.. She only spoke about the great care in NY hospital by the staff and the wonderful doctor who helped her.
Kath