United Brachial Plexus Network

It wasn't the urge for a snack. I was thinking about awareness week and the ice cream social at Kimberly's when it hit me. Kimberly had made out these packets for the guests and the people there were very inquisitive and interested. What hit me was with all that everyone has done and Kimberly has done alot, it hit me that the ones responsible for this need to be the ones made more aware. The doctors the hospital staff. They are the ones that need the wake up call. So next year we should try to organize an adopt-a-hospital program where each family sets up a display somewhere in the hospital for the week of awareness. I would not think it would be that difficult to get permission for something like this as long as we promise to keep it informative. It was just a quick thought that these are to me some of the most important people to make aware.

Some other places could be schools, Medical schools. Just a thought.

That is an excellent idea!
Awareness of this injury needs to be all encompassing. Those we need most to reach sometimes are the hardest. But you are right in that we must reach out to this particular community.

Nancy

I think that is a wonderful, wonderful idea. I only wish I had more faith that the hospitals would actually be open to it. Perhaps some would but I can't but help think that many would not be too open to information like that being passed out in hospitals.

Information and knowledge is power. I do not believe that the medical community wants people to have this information. I do not believe they want to acknowledge much of anything about this injury and they certainly do not want to acknowledge the cause of it. If they were to be open to information about preventative measures, risks factors or even appropriate maneuvers than they would also have to acknowledge their role and responsibility in preventing this injury. If what I am saying makes any sense to you.

This is what frustrates me so VERY much because the very population that needs to be reached is putting up the greatest resistance. We have to find ways to address this particular population because in my heart I do not believe that just spreading information to parents will ever truly make the deep impact that we need to make a significant impact, and in the end we are still vulnerable to the expertise, awareness, and skills of our doctor.

I think the work Karen (mother of a son with bpi) is doing in the UK is absolutely amazing! Training those who deliver our babies hands-on how to handle a shoulder dystocia and practicing on life like mannequins will make a difference. Unfortunately, I think in the US it would be quite difficult to get the medical community to open up to such trainings. As the in utero defense is growing in popularity and bogus articles are being published I don't think acknowledging appropriate maneuvers, etc. helps their growing claim. Although it sure would be worth a try! Honestly, I think getting video cameras in the birth rooms again and having hospitals actually be required to have a rolling camera up on the wall would be a huge success for future children! I still don't understand how so many hospitals have been able to just take that right away from us.

Forgot to add. I think medical schools should be on the top of our list. Not sure how we could truly make an impact but obviously these guys aren't receiving the training they need.

Not that this would ever happen but I have thought how I would love to walk into a class of doctors or midwives in training and actually find out what they truly know about this injury, how they can take preventative measures, risk factors, what NOT to do, what protocol plan they have in mind, etc.

Does UBPN have any future plans in store on how to more aggressively address the foundation of this injury and true prevention - doctor/midwife skill and knowledge?

4Jake,
If you decide to organize or initiate something like this I would be glad to help out. Keep us posted and keep your thinking wheels spinning!

I've always done awareness packets in O.B. waiting rooms. Kind of like the starfish story....We may not be able to save all but if each person saves one we will have made difference.
T.

The Starfish
Paraphrased From: The Star Thrower
by Loren Eiseley

Once upon a time there was a wise man that used to go to the ocean to do his writing.
One day he was walking along the shore. As he looked down the beach, he saw a human figure moving like a dancer. He smiled to himself to think of someone who would dance to the day. So he began to walk faster to catch up.
As he got closer, he saw that it was a young man and the young man wasn't dancing, but instead he was reaching down to the shore, picking up something and very gently throwing it into the ocean.
As he got closer he called out, "Good morning! What are you doing?"
The young man paused, looked up and replied, "Throwing starfish in the ocean."
"I guess I should have asked, why are you throwing starfish in the ocean?"
"The sun is up and the tide is going out. And if I don't throw them in they'll die."
"But, young man, don't you realize that there are miles and miles of beach and starfish all along it.
You can't possibly make a difference!"
The young man listened politely. Then bent down, picked another starfish and threw it into the sea, past the breaking waves and said,
"It made a difference for that one."

Educate One Woman - Save One Baby

I ahve made 10 packets, bot that many but its a start right.... it includes from our website who WE are at UBPN, inforation for adults with BPI, quick facts sheet, a gollasary of terms, as well as the entire medical resouce directory, contact info as well as the questionare responses! I am taking these to the local hospital, a few different docotrs offices, and even some info to the police station! My mom has made a few and is sharing them the same in her town! I wish there was more but I really think that htis is a start in the right direction!!! Ill let you know how things go once I get all of them out. I am interested how the police station will react. I am going to ask that they make their guys aware of us! Good luck to e veryone and keep up the good work!
Courtney

OOOPS Almost forgot.... I also drew up a bio about me and my accident and what I have been through. I have added that to the packets with my email addy so that people may feel free to contact me!

I this is an excellent idea! If I can get approved to start an Alabama UBPN support group ;0) (since AL doesnt have one and NEEDS one), I'd definatly do this! Its mostly rural here and poor...most women/girls have no idea what BPI is or how it happens.

And alot of Dr's know that noone is watching to see what they're doing...and wouldnt know what was happening if they did just neglect the patient!

It would probably be very easy for me to also set up in local health departments in and around a 5 or 6 county area. I have some pull on the inside (ha, ha).

angienbama.... there are no UBPN approved support groups - the bpi support groups are all independent of each other and independent of UBPN

I do have some information about how to start a support group from the National group that has disbanded... if you email me I can get you that information

francine@injurednewborn.com