United Brachial Plexus Network, Inc.

I have a friend who has a five week old baby. She took her in for her check up yesterday and the doctor told her it looked as if she has broken her collar bone during birth. When I heard the news of course I cringed. Again here the doctor told her there wasn't anything she could do except to let it heal. I talked with Mom last night and she said at first her daughter wasn't moving her arm, it were as if it were just hanging limp, now she seems to be moving it. She also said she can feel a lump between the neeck/collar bone area. I gave her all my information on BPI however, I was curious as if any other mother has gone through this where their child doesn't move their arm and then starts to. It sounds to me as if there could still be damage. She is calling her doctor and presenting the bpi information to her. I hope they give her their honest opinion. But unfortunately I can't hold my breath on that one.

Anyone had a similar incident?
Thanks for your help.
Rache from MT

I didn't move my arm for almost 6 months, granted this was 1966, 4 years before the ModQuad I believe was invented. My oldest sister was injured at the C& (elbow) and me at the C5 (deltoid). I don't know of any other family with 2 in the immediate family. same doctor of course.
People told my mom "at least you already have one and will know what to do". Unbelievable.
But what is more unbelievable is that OBGYNs still don't know what the options are or about specialists like Dr. Nath. I would advise her to contact Dr. Nath or another specialist no matter what her doc says. I still fax all my progress reports to the doctors that said "there is nothing you can do.
One bit of hope I will offer is that I have been told that 90% of the babies with this injury do recover in the first 3 months. 10% of us end up with Dr. Nath and others. I don't know if this helps but wanted to offer something as I noticed no one had responded yet.

Hello there and thanks for your reply. The last time I talked with her she was waiting to get in to see her doctor. Without trying to sound pushy I just truly want her to get a correct diagnosis. It is frustrating and how dare that doctor tell your mom she already knew what to do. Grrrr...that makes my blood boil. Sorry..but grrrr...

Rachel
I hope this baby is diagnosed soon!

Suzy you were told 90% resolve.
I have read the same statistics but then found out no one is counting us.
That makes me question that percentage.
If no one knows how many babies are bpi injured how can they say that 90% resolve.

Resolve is another word that you can question.
What is resolved? Is it 100% function or is it 25% function. When do doctors consider our injuries resolved?

I tried to find the answer to these questions with no luck.
The CDC do not have a specific code for obpi.
So doctors and facilities can quote any statistic they want but there is no proof that it's the truth.

We need accountability by getting the CDC to require mandatory reporting under on specific code for obpi.
The CDC does require this injury to be reported under it's own code.
No one is tracking this injury therefore, no one can give any true statistics on it.
Once the injury is properly reported it will then be tracked and someone will work on lowering the real statistics.

Kath (robpi/adult)

In some ways they do track the injury, through hospital discharge records. OBPI has a ICD code of 767.6. Some states make these available for free, some make you pay, and some don't give out the information. You can find the coding on line for some states like CA and WA. It is amazing to look through the data. There is always other codes associated with 767.6. It is never the only code, usually there are codes for things like facial bruising etc.

We showed a breif analysis of what we found in an outreach (I think4issues ago)

The reason hospitals even code for this is so that hey can charge for some of the procedures they perform to diagnose it (xray for suspected clavicle for example)

So although not mandated to be tracked, it is somewhat tracked because of billing---just not easy to access.

-rich

Rich
Some what coded will not really help with accurate statistics.
How can anyone say 90% resolved if there is no universal track nor actual numbers?

It's amazing how this is such a serious injury yet is not given the attention or research that it should get.

I knew it was reported under some codes along with other injuries.
Until we are counted no one will undertake the task of trying to lower them.

Kath/robpi/adult