United Brachial Plexus Network, Inc.

The main thing that upsets me about Stephanie, is that it should have all been avoided. If the medical team would learn to listen, patient would be much better off. I told all of them that it all did not feel right, that there was a lot more pain this time. I also get mad/sad because of the pain Stephanie has to suffer, from the very beginning of life. For us, we have always been open to Stephanie and anyone who asks. Most people aren't trying to be rude, just curious.
It is so hard to look at a baby that you love more than life itself, then have to inflict pain her, by doing her PT, because of one persons Unknowledge.
Smile, hopefully today will be a better day.

Michelle,My daughter is only 5 and I hope someday when she's older and asks more questions I will have healed enough to talk to her about it. Right now though, it would be very hard for me. I have had so many emotions over the circumstances of her birth, from initial guilt, to anger after learning about BPI's and looking at our medical records and talking to our attorneys. I know the pain you're mother feels and have not had time to deal with it because I have spent so much time trying to help Michaela heal and deal with has has been given to her in life to bear. When children are little it takes alot. I hope that by the time she's your age, I will have had time to deal with my own healing. Right now I just accept all the pain and fighting for her, and doctors and therapists and decisions to be made as our lot in life that has to be dealt with . I have no choice. I am the caregiver in our family. I know God has and will help me bear the burdens and find the lessons and joys. In our experience, I could never describe to you the feeling of having the nurses and doctors hide what's going on from you, not hearing your baby cry at birth and seeing a crash team working on her, having her taken away to be treated before I even got to see her, being brought to me in a critical care isolette for transport to another hospital with an NICU unit and given a teddy bear to hold in place of her while only being able to reach in and touch her fingers for about 2 minutes before they left with her not telling me what things were wrong, sitting in a lonely hospital room for 2 days waiting to be released so I could go see my child, sitting with a breast pump trying to get my milk to come in to send to her, even though she wasn't allowed to eat for 4 days, hearing the other babies crying and families in the other hospital rooms while I sat alone missing what had been a part of me, no kicks, no punches, all gone.Finally seeing her and being told that her heart had stopped and it took 20 minutes to resuscitate her, that her organs had started to fail, she had pneumonia from swallowing meconium while being stuck for 3.5 hours, cries constantly because of 3 broken ribs and has a limp arm which has iv's and monitors going in and taking a picture of Mom and DAD to leave in her crib to see while we're gone.Being released from the hospital and given a summary of actually 15 things that were wrong and a list of therapists, orthopaedic surgeons, and neurologists to visit, wondering if there will be any brain damage from the lack of oxygen and the list could go on and on. It is so overwhelming you just deal with it by rolling with the punches and floating through.
I know I have to deal with my anger and emotions soon, or I will be like your mother, unable to talk about her own birth. It wasn't the fairy tale that we see on TV, even on the new birthing shows that are the cable rage. Just be patient with her and maybe you can deal with it together. Just be aware that if she talks to you about it, it may stir some guilt or anger in you, too.Make sure you are ready to deal with this also. Good luck, LeeAnne Browning mother to Michaela age 5

Michelle,
I did not realize until I was almost 40 that my mother felt that she was responsible for my injury. She had no idea that it was not her fault. I had no idea that she had held those feelings for all those years. Maybe your Mom is feeling like this. Tell her that it is NOT HER FAULT. Maybe that might help her to talk more about it.Now i tell mothers not to feel guilty .They did nothing wrong.
I answer peoples questions by saying that I am partially paralyzed from birth. They usually do not ask any more questions. Hope this helps.. Judy

Thank you for ur replies. I will tell my mum that she is not responsable and see if it helps.

Thank you as well for tellin me how you explain your injury. ill use that in the future..

Thanx again

Michelle -x-

Parents respond in their own different ways to their OBPI children, but I think LeeAnne described very well the emotions of guilt, frustration, and anger most feel. I was talking to my Mom the other day about my injury (she's 94 years and I'm 63) and tears welled up in her eyes as she described her devastation when she realized that I had been injured during birth. She felt extreme guilt even though my injury was not her fault in any way. So your Mom's feelings will likely last a long time which is understandable. After all, when you become a parent, you're a parent for life.

I'm very glad that you've started to talk to your Mom about your feelings and hope that over time she can become more open to you too.

John P.

I never minded explining about my arm. It was better than covert stares. It never bothered me to sat, my arm is partially paralysed. It did bother me to be singled out and forced to do something in front of a group of people that required both hands, I felt embarrassed and covered it up with a lot of sarcasm and a bad attitude sometimes.For example-push-ups. The PE teacher told me I was just being lazy and made me do pushups in fromt of the class. I still see red when I think about that day. Pat

Hey there everyone.

Just decided to write a wee post just to say how annoyed i get at people asking questions about my arm. All the pupils in my year and my friends, family etc know what is wrong with my arm and do not ask about it and this suits me fine bcos i really cant b bothered explaining. This is for 2 reasons...1 it either takes me ages to really explain the truth or i jst give a brief it got stuck when i was born(i was told that until this year!) But I went to a house party on thursday night and all these boys that my friend met came alot too. These boys are from another town so they hadnt seem me before. I was talkin to them all night and we had a laff but when i was in the toilet some of them were Q-in outside and i heard them sayin -"no u ask her" and so on. When i came out of the toilet they guys faces were a picture...finally nearer the end of the night when i was sittin down a group of them came up and asked me what was wrong with my arm because it looked different! i jst sat there and thought to myself...y do you need glasses?...why do you have red hair? I do not feel differently to ppl with glasses or red hair but y do ppl have to ask about our arms when other ppl look different 2? This annoys me a lot! Iv got through High School with all the questions and now noone that knows me asks but i suppose when i move on to University and then work there are gonna be more ppl askin questoins...how do you all deal with this?

Another thing my mum was talkin about my arm(for the first big conversation) she told me that she didnt sue because she was sooo traumatised by my birth that she didnt want to go out and the last thing she wanted to do was sue because it would make her worse and would fill her will more anger. She also said there were things about that birth that troubled that she wouldnt even begin to tell me about because it would upset me 2 much...but this makes me wonder wots happened and why she still gets upset talkin about it.

I posted a wee while ago sayin that she NEVER mentioned it so i felt that it was a tyboo subject but maybe iv found the answer to why she does this. She really cant face it she gets so upset about it.

We were talkin in the car about it on our way to the shops for some clothes and i could see the tears in her eyes she was so upset i felt terrible for kinda pressuring her to talk about it.

For the mums...do you all feel upset about ur child w/BPI birth?? would u explain what upsets you to them?

Thanx

Michelle -x-

Michele,
My mother died at 95 always sure that she caused my injuries. It was a topic we only talked about 2 times in my life. We injured children do not want to make our Moms cry so we often don't speak up about our pain ,etc. Often ,Low self esteem is a consequence, depression too. I did all the wrong things to "fit in" and when I hit menopause I paid a high price. I strongly suggest attending UBPN Family Camp in 2014 in September. Lots of injured teens attend and it is awesome to see the changes Camp to Camp(every 2 years) into very strong people because the talk and share generously with one another ane we injured adults meet closed doors,no parents,and answer every question. This year all injured go free. Information is on the home page link to "CAMP 2014". Camps are for everyone...moms get to network alot too...child care provided for sibs Camp is Life Changing for all who attend.

Carolyn J
LOBPI/75++++