Do you think that?

[Tanya in NY]

I don't think that this is really a "fair" question to ask for the following reasons.

--Most people would be basing their answer on the fact that they are seeing more new parents/families on listserves and websites like UBPN and such so they may think that the incidence of BPI (whether OBPI or TBPI) is increasing when really, this may or may not be true.

--There is no national standard for collecting this information as stated by Brenda earlier, therefore there isn't an accurate way to track this injury from birth to base this answer upon.

--I think that many people may answer this question based on population served. Follow me here. If you have a larger population of patients that you serve (for example if you do 1000 deliveries/year versus 500), then you may see 2-3 injuries versus 1/year. Therefore, it may seem that incidence is increased in your patient population but when really, statistically it is the same as the national average.

I think the better question to ask here is do you think that awareness and education has increased? My answer to that question is yes.

My second question would be, do you think we still have a long way to go to further education and awareness? And my answer would be a strong felt YES!

Even if the OBGYN/CNM is not reporting the BPI at birth, the baby must have an evaluation by a pediatrician within 24 hours of delivery. Why is the pediatrician not reporting this injury correctly? There is an ICD-9 code (actually a couple of them). Of course, if the BPI has resolved by the time the pediatrician does the evaluation, then he/she may not decide to report it (which to me is wrong and should have been reported as a resolving BPI due to the unknown long-term consequences that you and I all know can result down the road). This could be something to address with peds. as well as with OB/CNM groups.

Just my opinion. It's interesting reading everyone's reasoning for their answers.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

[Ben's Dad]

Hi Tanya,

I don't know if you saw this article that was posted about a month ago, http://www.14wfie.com/Global/story.asp? ... v=menu54_6

It made me wonder, if zero percent is possible, why can't it be a mandate instead of an option? I think they (hospitals,OB's) should stop weighing the risks against costs..if there is a risk for a birth injury or complication, any risk, then ignore the cost and do what's right.

My feeling, biased as it is,..if all patients were treated as the doctors themselves (or their loved ones) would want to be treated, the incidence of birth injuries would go down.

Your point about the pediatrician is absolutely valid, why aren't they required to report BPI's? Is it all for the sake of avoiding liability issues? I am curious.

[Tanya in NY]

Hi Ben's Dad.

You said, "It made me wonder, if zero percent is possible, why can't it be a mandate instead of an option? I think they (hospitals,OB's) should stop weighing the risks against costs..if there is a risk for a birth injury or complication, any risk, then ignore the cost and do what's right."

A few reasons:

--I think that for the most part, many hospitals are working towards zero birth injuries. It's a tough process. For a layman, it would sound very easy to fix. For the individual who is in the delivery and dealing with patients and the situations at hand, it is not so easy.

--Unfortunately, even if a hospital is a not-for-profit hospital, it still needs to function in the black. It still needs money to run. By doing interventions (such as cesarean sections) they are costly for the hospital and the patient, not to mention the health risks due to the surgery.

--If you look closely at the article you posted about the zero birth injuries, never in that article did it say what the cesarean section rate was prior to the implementation of this new program versus since the implementation of the program. What is the primary c/s rate (1st time c/s) since implementation? How many episiotomies are now done and how many were done prior? How many epidurals/intrathecals are done before and after? How many inductions before and after? All this information is of grave importance to the context of this article, yet it was left out. To the layman, this article sounds wonderful. I am very happy that there has been no injuries to infants and mothers at this hospital, but I also wonder, how many women had surgical intervention (primary c/s) now because of this "communication" that they talk about. I need a bit more information before I wholeheartedly believe this. I unfortunately know how statistics can be skewed one way or another to paint a rose colored view.

I don't know the answer as to why pediatricians, or the OB/CNM's for that matter aren't required to report BPI's. It's so very frustrating for me! So many things about BPI are very frustrating for me, from the start of the injury to the point of where we are with our 4 year old daughter now. But, as a group of dedicated parents and injured individuals, we can ban together and make small steps forward to make changes.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

[Ben's Dad]

I don't presume that fixing the problem is going to be easy. I would just like to see some progress in the right direction.

As a layman, these are some of the things that I see:

-Lack of reporting for a birth injury that is more common than Down's syndrome.
-The use of cost analysis when weighing the risk of birth injuries vs. increased C-sections and saying that some birth injuries are an acceptable risk.
-The funding of studies that say that BPI's happen in utero, which are designed to discredit plaintiffs in court. Talk about skewing statistics...
-Doctors making false claims that high malpractice insurance rates and lawsuits are driving effective medical care and access when that has been proven to be completely false.
-Doctors failure to police their own. They will tell the public that there should be caps on lawsuits and it's the lawsuits that are the problem but do absolutely nothing about cleaning up their own.

Sometimes I get the feeling that some of these injuries might have been avoided if the delivering practioner paid closer attention to the patient (or just listened to a patient's concerns), communicated better with the patient and discussed options with the patient.

[Brenda333]

This is how the CDC responded:

Because CDC is not a regulatory agency, it does not have the authority
to mandate reporting of health conditions. National surveillance for
public health conditions is conducted on a voluntary basis, usually
through state health departments which have their own individual
reporting requirements.

Most state birth defects surveillance programs monitor malformations
that arise during gestation, rather than abnormalities that originate
during delivery or in the newborn period. However, the Division of Human
Development and Disability within our center focuses on the health of
persons living with disabilities, regardless of the origin of the
condition. I will forward your suggestion to them.

So, I guess this is a start???? ARGH!!!!

[Kath]

Brenda
UBPN has been in this cycle for the past 6 years. Until we asked how the NIH received the figures we were not aware that we were not being tracked.
Several years ago I asked how they came to the conclusion that 80% resolve on their own.
I also wanted to know what was resolved, what did it mean? Does it mean 100% recovery or any recovery at all means resolved. I have limited function so am I considered resolved?

I attended the NIH Conference on Disabilities Across the Life Span. I spoke with CDC members there, I wrote letters to NIH, CDC and my own state.
I did this all as the In Touch Chairperson for UBPN.
I received many responses including the one's that sent me in circles.

The response that annoyed me the most was the one that said " contact the AMA of OB/Gyn." If they request reporting it might happen.

I actually feel the only way now to lower the statistics that we have, would be through education.

UBPN continues to push for uniform reporting of bpi, immediately after birth regardless of the supposed degree of injury. But,that is a long hard road and one with many road blocks.
That does not mean we will give up it just means we must work harder and find a way to get our point across.

We wrote and met with members of SSA and just last year Nancy and I attended a SSD conference in NY on updating the Blue Book. We were successful and now we have recognition and change for bpi injured people.
We truly have to be persistent with the powers that be in the government agencies to make changes.

Recently I contacted the March of Dimes regarding their lack of information on SD as an Emergency during delivery.
They responded and said they realized it was not on their forms and would look into it.
You would expect it to be there due to maternal health issues they supposedly support.
Many other things were listed but no mention of the possibility of SD occurring during delivery.
I was disappointed to see it was not listed as important birth information.
I will continue to pursue it with them but in the meantime how many babies will be injured due to a lack of information given to the new parents?

If anyone knows a way around the system that seems to block us from getting the CDC to pay attention to this life altering, serious birth injury please contact me.

Kathleen M Mallozzi
UBPN In Touch Chairperson
KathM@ubpn.org
BrachialPlexus1@aol.com

[Ben's Dad]

I have found that sometimes when you deal with government agencies or bureaucracies, they will tend to disregard you or quiet a lone voice of dissension. Has UBPN ever presented a written petition to NIH or CDC? Maybe, just maybe if they are presented with signed petitions they might give it more weight or credence. I'd bet that the next camp would be a great place to have the petition signed and by mail for those who can't make it to the camp.

[Ben's Dad]

Bumping up for "anotherbpimom"