United Brachial Plexus Network, Inc.

I have a 5 week old daughter that has been diagnosed with Erbs palsy. Like many of the other parents I do feel upset that the Doctors are not taking accountability. Like this is normal. A loop hole of some sort. Be angry with me indentify my worries and concerns. This could have been prevented. My Gyn Doctor.. I have a great respect for him. I don't want to hurt him He made a mistake at my daughters expense. He sat in my room on more than one occasion before leaving the hospital. I believe trying to apologize . But I was so happy that she was alive ,I did not comprehend all that took place during the delivery. I thought I did something wrong. My husband is very upset because no one wants to admit something went wrong.In the area in which I live is no help because everyone(doctors) is connected in some way. No one will dare say the Dr was negligent. The wispering .. everything will be ok just need time she's very young. As a parent your wish your child to wave that arm around like the other one and you pray and pray and exercise and you see more doctors and you pray. That someone will care enough to give you the correct info. God is a just God and though him all things is possible. Through talking about it begins the healing an hopefully we can make other women aware. That is not an isolated case.To all that may read this my prays goes out to your family especially our children.

the anger is overwhelming sometimes... all you can do is get on your knees and thank God for the great blessings that you have. I try to think of my childs injury as a way to make all of us stronger. It does not always lift my spirits, but most of the time it does. I am so grateful for my beautiful child and the great blessing it is to know him. Try as much as you can to focus on the positive rather than the negative, and with time, it will even itself out.

and just when you think that the anger has subsided - something happens - you got lousy news and it's all back - stronger than ever. I am so angry today I can burst.

I'm right there with you Francine. This stuff hit me pretty hard this time. I am glad we were seen at the end of the day Saturday so I could enjoy the day.
Cindy

MY sons 11 and I still have bad days, or weeks, but it does improve...

I can't be much advise right now... have had some angry times lately.

It's just a constant battle with myself.
I will pray for your inner peace.

BUMPING UP .
Carolyn J
LOBPI/adult

hiya,

i'm not a parent so i really cant comment on the anger that you feel, however i do have a bpi and can maybe help a little.

I can almost empathise with your feelings about the injury being preventable but unfortunately, this has happened (to all of us on this board in some capacity) and the focus now is really to get around this disbelief/anger stage. Your baby is stil really young and i imagine as your child grows you will realise that she is a very special child with a really strong personality and maybe the anger will be reduced because not everythin is that bad.

As for people staring, i think the best thing you can do is prepare short explainations for when you are in a situation like that. So if someone asks "what happened to your daughters arm?", you could respond "its a birth injury" and if they want to know more they'l ask, if not then don't waste your breath, you've gave them a sufficient explanation. I also think this important for your daughter as she gets older because the more confident a parents response to this question is, you often find the child follows the trend. Maybe in future when you feel a bit better about the injury you can adapt your responses to be a bit more in depth etc, but i've never felt the need i just always keep it short and if they want more, they'l ask.

I also think you will realise that your daughter will learn a lot from her injury. In that every1 is different in some way. I would definately say my injury has made me a much more accepting and understanding person and i can totally accept differences in people. Many people with a bpi will tell you that they are strong willed, never-give up type of people, so your daughter is probably going to follow

Have you read anythin on child/teens/adults with bpi and the amount that they actually can do? because its a lot! yes we absolutely do adapt a lot of things but not necessarily with aids but just in our own ways. your daughter will be like every other child - stage wise - she will be cheeky, chatty, giggly, michevious - will want to go out with friends as she grows up, wil be interested in all the normal things - clothes, boys, lipgloss, nail polish, and each of those wil bring their own challenges but you and your daughter, as a team, will work through them and no one else really needs to know about these difficulties if you dont want them too so she will seem absolutely fine. For example, i have a right sided injury so i couldnt paint my nails on my left hand but my mum used to do it for me for goin out or when i wore nail polish to school and i never told any1 so to every1 else i could do it. but with plenty of practise i can do it myself now!

I really hope this helps or gives you comfort of some kind in knowin that you may be angry now but as time moves on your anger will lessen. And altho the injury is preventable, there are some positive things you can draw upon.

Michelle, 23
LOBPI

Only from this board have I become aware that other parents can have more intense (and misleading) emotions than their child, when it comes to the injury.

I'm not a psychologist and have no talent for counseling. I only have my story.

I don't know if my mother was angry over my injury when I was small. However, years later, she used it as just one more excuse to be perpetually angry at the world and everyone in it. She cursed God for not making me right. Nothing I was able to do consoled her. She's dying now and mentally ill. She'll never get over the anger.

Don't go down that path.

im still frustrated and sad about my condition. i needed to live my life with this. though have many happy times, i felt that i would be happier if i dont have this. i kinda blame also my parents for not having me operations nor extensve visits to doctor. i remeber my mother told me that we only visited a doctor when i was a kid like 3 or 4 times only and thats it. though my mother massages my right arm everyday and it is now better. i always thought that if my parents where rich that time, my condidtion would be much better. my condition really lowered my self esteem. im afraid to form really intimate relationship with other people becuase im afraid they would judge me. though i had a romantic connection with a person, it never lasted. im still 20 though i really think that i will not have a family of my own. it really affected me a lot in dealing with people and showing how i feel. though im able to accomplish many things, like im now graduating in college with a nursing course, i feel that im not still realy happy. i took nursing course so i can also help other people with illnesses. but im really worried if i could get a job related to my course because of my disabilitiy. im very thankful with the university i enrolled becuase they accepted me. but my professor talked to me that i should be prepared about it becuase some hospitals might not get me becuase they may think i will not be able to function very well and this really sadden me. but i will still do my best.

To paraphrase Dr. Seuss:

"Those who mind don't matter and those who matter don't mind."

You really shouldn't get frustrated about someone else's ignorance as long as it doesn't directly affect the health or well being of your child. There's no real point about getting worked up about things you have no control over. That goes with what Thomas Fuller is quoted as saying "Two things a man should never be angry at: what he can help, and what he cannot help." People in general are more content to be ignorant than they are to be compasionate. I know that is synical, but I find it to be true. That's not a rule, but a tendency I've noticed throughout my life. Maybe if someone asks a question about your child's arm, you can just tell them "She has Erb's Palsy" as if they SHOULD ALREADY KNOW what it is, and make them feel dumb for not knowing what it is. At that point, they might just shrug it off, or actually listen to what you have to say about it. Whatever the case may be, you should be in control of the situation. I doubt anyone will ever go out of their way to get you upset over this, so you may have to forgive them in advanced for being the average person.

Chris LOBPI/24