United Brachial Plexus Network, Inc.

Do you think that the incidence of OBPI in recent years has:
1. Decreased
2. Increased
3. Stayed about the same

The CDC's National Center for Birth Defects and Developmental Disabilities (NCBDDD), does not collect or maintain the data on the occurrence of brachial plexus birth injuries (e.g. Erb's Palsy).

Anyway, I am just curious to what you all think.
Brenda

The words are seen and heard more through the media and the internet certainly has opened up the universe to information about it. I know that gestational diabetes is epidemic. Babies are being born larger...
But we will never know about increase or decrease if no one's counting. And who came up with the 1-2 out of 1000? (or 2-5 or 3-5 or 1-4) especially if it goes undiagnosed at the time of birth? There's a lot of work yet to be done.

I am by far no expert....BUT.....it seems we get at least 2 or 3 new families around here every week, if not more. Sadly, my fear is that it is increasing.


Love and Hugs,

Cheri, Mom to Katie, 4, LOBPI

I don't know if it's increasing or if it's that more families are being more informed about what it is their children have. So many times I've heard parents say that they were not given any info about it being an injury and there being things that can be done. so many have given up hope & just thought their child was born "different" like it is just an abnormality that sometimes happens.
My prayers are with you all as we learn more about these injuries and how to cope and offer hope to others.
Tonya- Miah's mom

I agree with Miah's mom. I think that more people are finding out about them. The internet has made this possible. When I had my daughter 16 years ago, she was born with a broken clavicle, but the words erbs palsy or brachial plexus injury never crossed their lips. She ended up not having either, but how would I have found out....it is not like the doctors tell you. I even had a pediatrician tell me that my son did not have a BPI....I grabbed my son and RAN out of there.

Definately I think that they have increased....but I wonder how many their really are...is it truly 2 out of 1000 DOUBT IT

I have been getting a lot of feed back from the above question, so I thought I would create an online survey. This way I can keep track. This matter concerns me greatly.

Oh, yeh! The survey can be found at: http://www.opinionpower.com/Surveys/343045530.html

It's hard to say, since it's not being tracked anywhere, just random numbers with nothing backing up those stats. Given the fact that bpi clinics are popping up over the country, there obviously is a need. We can count the folks that come here and other support sites but that is just a fraction of the number of cases across the US.

Would these be the actually people that should be contacted?

The CDC's National Center for Birth Defects and Developmental Disabilities (NCBDDD), does not collect or maintain the data on the occurrence of brachial plexus birth injuries (e.g. Erb's Palsy).

A Brachial Plexus Injury is NOT a bitrh defect, so how would this specific organization fall under our cause?

Are there other organizations that would be more suited?
Is there a way to make hospitals required to track these injuries through UBPN? I dont know, I'm clueless about this stuff. But I do feel we have a right to know.

Keep on with this Brenda!

My 2 cents, if you will. Why do the OB's continually change the definition for fetal macrosomia (high fetal birth weight) of course, to higher numbers, if you aren't in fact worried about an increase in BPI's and subsequent liability from BPI's?

Read the Cost Analysis portion of the Guidelines:
http://www.guideline.gov/summary/summar ... 2&nbr=3110
Doesn't it always come down to the $$$$, that's the shame of it.

I have to agree, I think BPI's are on the rise. Thank you, Bill Gates and friends for the internet...gives us things like UBPN and awareness to others about BPI's.

About a year ago, I used my librarian powers and sent an email to the National Institute of Health (NIH) and asked them this very question. They said they do not keep statistics and I should contact the National Center for Health Statistics (NCHS). I did. Their response was that they don't keep statistics and that I should contact the NIH. It was a viscious circle.

So here's our problems:

1. Doctors are not going to report BPIs.. We've all learned that the hard way... Too much liability.

2. Even if they did report them, our NIH/NCHS/NCBDDD needs to get on board and figure out which one of them will be the reporting agency.

Each one I think will be as difficult as the other.

Cherie

> About a year ago, I used my librarian powers and sent
> an email to the National Institute of Health (NIH)
> and asked them this very question. They said they do
> not keep statistics and I should contact the National
> Center for Health Statistics (NCHS). I did. Their
> response was that they don't keep statistics and that
> I should contact the NIH. It was a viscious circle.
>
> So here's our problems:
>
> 1. Doctors are not going to report BPIs.. We've all
> learned that the hard way... Too much liability.
>
> 2. Even if they did report them, our NIH/NCHS/NCBDDD
> needs to get on board and figure out which one of
> them will be the reporting agency.
>
> Each one I think will be as difficult as the other.
>
> Cherie

You can find out the growing results of the Occurrence of OBPI Survey at: http://www.opinionpower.com/results.cgi?id=343045530

I am in contact with the CDC regarding how we can go about getting them to track and collect this data. Hopefully, we will hear something back soon. I will keep you updated.