United Brachial Plexus Network, Inc.

I have been researching the obpi statistics for the past few months. I have contacted various Government Health agencies. They have all been most helpful and have refered me to other agencies that could help.... but no one knows who keeps the records!!! Because there are no records being kept on obpi.

I began to research because someone posted information from a Malpractice Insurance site and I noticed was that the statistics did not jive...

I contacted the CDC, National Institute of Health, NY Health department... National Institute of Neurological Disorders... I got the same answer from all of them... they refered me to birth defects or deformity... when I contacted those branches they said " bpi is not a birth defect it is an injury and we don't not cover that area"... so I started from square one again...

This is a very frustrating task, ... If a baby is injured during the birthing process and no one is required to report it to any agency - - that means there really are no accurate records covering this birth injury, except the ones kept by those doing repair work or the malpractice insurance cases... We have fallen through the cracks and it is up to us to get counted properly.

I am still trying to find a place that is responsible for tracking this birth injury and keeping this information...

If we are not counted how can anyone hope to lower the statistics????????

I just received another answer from a government agency this AM telling me to contact my state... it is like wandering through a maze.

I am now beginning to wonder if the statistics are not higher then we think????

As far as records stating SD or not... if the child is injured does it make any real difference... it could just be a matter that someone forgot to write the reason down... does that me I was not injured??? my Mom told me no one put the time of my birth down because there was too much confusion in the delivery room... I wonder if I could have gotten my records what it would have said...
Kath

Kathleen,
You are so brave for attempting this mission! The information you were told is correct. BP is not a birth defect. Even if it were a birth defect, it is sad to say that there are no national statistics for birth defects either. It is a state by state thing. And according to a recently published report by the PEW Commission, there are only 8 states in the country who score an "A" for birth defect tracking. Many states have no tracking at all, scoring an "F" (including Ohio).
http://www.envirohealthaction.org/uploa ... _21_02.pdf
http://pewenvirohealth.jhsph.edu/


The CDC birth defects branch http://www.cdc.gov/ncbddd/bd/bdres.htm#NBDP
is called "The national center on birth defects and developmental disabilities" and there is also a new office in DC termed "the office on disability" I think, - technically, we are talking about disabled children and adults, so perhaps we could get them interested? Also, would the cerebral palsy people be interested in coordinating some tracking? Not familiar with what all they do, but I think they are similar in that CP is not considered a birth defect (I think). Again, funding would be an issue to get anything started.

I agree that there needs to be better tracking of injuries and defects!! There are many hurtles, of course, but judging from some states, it can be done. The hospital charts need to all have similar things on them. Then there needs to be a system for reporting the information adn what type of information gets reported. Then there needs to be a system to make hospitals and midwives, etc. to comply. The bottom line of course is funding.

I would suggest starting with one of the "A" states, in hopes that if they are good with birth defects, there is a chance that they might be interested in defects as well. California might a good start. If we had a rate for a big state like CA, it would be good to know.

Also, I thought UBPN or some other organization supplied funding for BPI research. What kind of research was the funding awarded to?

Thanks for your efforts and good luck!
Tina

Tina

I started with National Institute of Health and they did direct me to other branches for information. Each director I e-mailed was as helpful as they could be and some took time to research and direct me to other agencies they thought might be responsible to keep track of injured children... I received prompt reply to all of my e-mails... I have also tried to track down any long range studies on the life long effects of being birth injured. And there are no studies execpt one I read on the internet... and in my opinion as an obpi it has no real value nor do I think that it was a good study...

I began with my home state of NY... I must say all the agencies I contacted have really tried to help and have given me as much information as they have. The woman (doctor) in charge of tracking deformity and defects was most kind and informative. She called me back immediately and directed me to another lady to contact. She also suggested we get on the CDC agenda to be considered to be included in their tracking system...

My gut feeling on this is -- if we are counted then someone would apply to NIND for funds to reduce the statistics! But without being counted it won't happen.

There are meeting in DC on children with disabilities and adults who are disabled and I hope to attend one in July... I also will write to any organization who will try to support us in our efforts to be counted...

I am birth injured so I know the direct results of this birth injury and how it impacts a persons life... both positive and negativly...

At Thanksgiving my niece was playing with her daughter... swinging her in a gentle fashion and guess what her daughter had to go to ER for Nursmaids elbow --- she was so upset... of course this has to be reported as an injury... and now counted as a playful injury...

Yet obpi babies go un reported... something is not right... If a teacher sees a child with an injury - That teacher is required by law to report it... Why not require the obpi baby be reported also...

I think that we will have to start at the top and work our way around the system...

I am sure that others have also tried this but it never hurts to keep trying.

Kath

Kathleen,

What you are doing is great! Wow. It really makes you start to think. We HAVE to stand up and find a way to be accounted for. Gosh, what you said makes so much darn sense, if we don't then there will never be any stats to work on lowering.

What a big task, but sooooooo worthwhile. Can't believe how our children have completely just fell through the cracks. It is so sad, because if any change will ever happen, it will only be because the people directly impacted took a true stand. It seems like there is always more power in numbers. I wonder if we could form some type of organized group or if UBPN has thought of trying to make change in some of these areas. You know I always invision one letter going to Oprah versus 300 or ?, such a different impact. Please know that I would be happy to help in any way.

Keep us posted!

Birth Defects Surveillance is listed on the CDC website.... I would like to see Birth Injury Surveillance....

the only approach I think that will work is to have a clear plan and also to be practical... if we get too emotional everyone turns off... I know that sounds harsh but reality is something that smacks us in the face... This is a very practical issue... if the statistics are high then the government will want them lowered and the medical profession will also want them lowered...

I really do think that many medical professionals do not realize how high the statistics are... and have had little to no experience with birth injured and are relying on old text books or some of the in accurate web documents... That is why Awareness is so important...
Thank you for the offer of help... Each time we make another person aware of this injury we prevent it...

It is nice to write letters to TV people but so far it has gotten us no where... What we need is accurate records kept...
Kath

Guest, sorry to hear about your experience. Parents on this board do come for help and support and sometimes there are people who lurk and use the information we have posted against us. So some of us are just being a little cautious.

I am surprised that the attorney did not have this information to share with you.

My daughter had shoulder dystocia which resulted in obpi, marked on the medical records as shoulder dystocia and I am having a hard time finding an attorney, so just because it is on the record, does not mean there is an easier time with a lawsuit.

Sorry if I am so disagreeing or blunt, but I am frustrated myself trying to find an attorney, with sd reported and already having one surgery.

Just needed to vent tonight.

Elisa & Kathleen - UBPN does (or used to - not sure) have a government relations chairperson/committee (something) that has done work in the past with appropriations and with SSI, etc. I don't know what the current project is but contact Nancy Birk at nancy@ubpn.org. It also may be something that both of you want to become actively involved in - so get ready to roll up your sleeves!

Tami - I'm so sorry that you are having a hard time finding an attorney who will take your case. Are they telling you why they think your case is not worthy?

-francine

Has anyone tried contacting the Christopher Reeves Paralysis Foundation?

Also, Kathleen, you mentioned that injuries must be reported. Who receives those reports? Who enforces them? It would be nice if they could expand their surveillance to include birth injuries, like you said. I suppose that is also a "state by state" thing.

Good luck, Kathleen! And thank you for all the hard work!
Tina

Elisa & Francine

I am the person... the program I chair is called In Touch... We are still a young network so the roles and paths keep changing... It might help if I explain what the In Touch Program is and why I choose to follow this line of action to help prevent this injury and to also get better care for those already injured.




In Touch Program

Chair: Kathleen Mallozzi (kathm@ubpn.org)

The In Touch Program of UBPN strives to establish and maintain open communication between those with a professional interest in brachial plexus injuries and our community. The In Touch Program supports professional endeavors that are of benefit to our community. The four main objectives of this program include:

Create and maintain a Professional Online Registry. Registry listings include Medical, Therapy, Legal and Other;
Create opportunities for professionals to communicate directly with our community. (Online, in person and in print.);
Create opportunities for professionals to communicate with one another regarding brachial plexus injuries; and
Facilitate professional research related to brachial plexus injuries


When I took on this job I knew that I would be sort of making my way as I went along... That is why I have been writting to so many government agencies...
Before I took on the position I would write to every web site I found concerning bpi injuries and seek information...

When I began to write more seriously as In Touch Chair person... I realized that we have only those hospitals doing repair and malpractice insurance companies to get our statistics from...
Now my job will be to get US counted - When we are counted then the next step will be to lower the statistics that is the natural process...

I spoke to dept. of Health for NJ this morning and had to explain what OBPI is and how it happens... So along with public Awareness.... we must be counted...
This is not only a matter of child health but a woman's health issue...

If anyone has any suggestions or want to help please contact me - KathM@ubpn.org

Sorry Guest Poster, i understand your resetment. I do believe that these loveley people here would be thrilled to support you however they must watch their backs as things discussed on this board have been used against them before. Please try to understand and I hope you found your answers!

Lenni


PS How about e mailing someone next time?