How to change the system???

[anotherbpimom]

Has anyone TRIED to require hospitals to report this injury? Shouldn't the medical assoiation know if a doctor has numerous occurrences? Do any of you know how to go about this? I feel extremely motivated to do something about this, but not sure how. Thanks.

[Mare]

Report it that's funny. The hospital I delivered at didn't even tell me the mom that my baby had bpi. They just said his shoulder was fractured and in 6 weeks the arm would start moving and gain feeling. When we went to see a his peditrian she said the doctor knew as soon as it happened and since he was in the hospital nine days and saw numerous doctors both neuro's and ortho's and had dozens of tests even a spinal tap that the whole hospital knew and no one ever said brachial plexus or permanently paralyzed he also had Horner syndrome which indicants a severe nerve injury. This means lawsuits so to report it admits guilt. But yes I feel by law the doctor should have it put on his record my ob was on vacation the sub we later found out had lost his private practice and insurance because of 5 other bpi baby's and the baby born before my child had her brain stem crushed during delivery and yes today 14yrs later he is still delivering babies for an HMO. Mare

[mommieinneed]

OMG that is just crazy. I still think to this day that there should be a video tape in every delivery room so then maybe drs would take more caution while delivering our little ones.

In my case the drs didnt lie about her having BPI they just lied about how she was born,they came right to my room and told me that Maggie had BPI but she also had alot of other issues at the same time and was in the NICU for a week so maybe that is why. They also did all kinds of test on her while she was in the NICU and made me have appt with OT/PT, a neorologist and an orthopedic before we even left the hospital.

Funny thing is I ran into a friend at an appt I had and her son who had recovered spontanious also had a BPI and while I was telling her what had happened to us she asked where and I told her and she said what doc and I told her and she said that her son was born there too and from the same doc and he was a week younger then Mags. So in one week this man ruined two arms of two little babies.

[anotherbpimom]

This is crazy. I want more stories. I want to document this.

[Ben's Dad]

Beth,
I think your login name says a lot. Unfortunately, kids continue to get hurt and no one seems to care...it's nuts, just nuts. I know there has been talk (UBPN Board) of trying to get some government entity to track the cases of BPI and require reporting, honestly, I don't know if any progress has been made. My feeling is that real change won't happen until the law requires it OR someone of fame or notoriety has it happen to their child or family OR unless one of us (BPI community) comes into a position of power...hey, maybe one of kids will do it - that would be great! Time and time again I see examples of the medical profession treating OBPI's like it's dirty little secret, I pray for the day that the secret comes out in the open.

[Kath]

Ben's Dad
I was born almost 68 years ago. My mother had to stay in the hospital for 2 weeks. That was normal for those who gave birth in hospitals. They told her I could not nurse because she had such a rough time. They told her my arm was pinned to my shirt because I was scratching my face.
They said the Horner's was nothing... ( we know the extent of those children injured with Horner's) They knew exactly what was wrong. They did a cardiogram on me right after I was born. I found the bill after she died in with her things. I could not nurse because of my injury not her poor health... So this is not new. I believe there are several codes under which this injury is reported under.
Several years ago, as the In Touch Person for UBPN,
I wrote to the CDC request information on how to make it mandatory that this injury be reported. I asked why we were not reported under one code. I was told to ask the AMA of OB/GYN to request it!
I attended the Disabilities Across the Lifespan conference at the NIH. One of the sessions was with the CDC, I was the only person in the room not a medical professional. If we had accurate statistics someone would have to work on lowering them.

This is not new and many families go home like my Mom did with injured children. Some families are sent home without telling them, this could be a life long cradle to grave injury.

Kath robpi/adult

[ptrefam]

Here's the part I don't understand. How come no one ever mentions this as on of the complications that may happen during what otherwise seems a normal birth? You get info about all other kinds of complications but not about BPI or shoulder dystocia. You never see pamphlets or anything in the ob offices. I had 4 children born in 3 hospitals and never even heard of this injury until Dustin was injured at 18. When my youngest was born I was just turning 40 so they did an amnio because of the risk of downs syndrome. Seems reasonable that they should mention that some of the accepted practices could increase the chance for a BPI and maybe then parents would make different decisions. NOT that I blame the parents, I definatly do not. But, if I knew that having an epidural could increase the chance that a stuck baby would have a BPI I think more people may choose not to have it. It just seems reasonable to have it mentioned before delivery. Also, they should state that it could be a life long injury depending on the severity not that it will spontaniously recover in weeks.
I never video taped any of my children's births but now that my daughter is married and talking of children I recommend taping each birth. Seems that is the best way to have proof, just in case. How sad that has to be.
Sue

[Kath]

Sue
Guess what? Some hospitals no long allow video tapes in the delivery room!

I have written to the March of Dimes concerning their websites lack of information regarding the dangers of a SD birth. They responded that they could not cover everything. Our e-mails went back and forth and finally they said that they would update their website and put out information about the possibility of SD during the birthing process.

Last time I checked it was not up. I was told they were going to update their website to include the risk of SD. I will keep writing but if they cannot put up information who will?

When I asked my OB could this happen to my children he told me NO it was rare. When I asked was there a danger to them, he said NO. He said " your mother's doctor had to do this to save your life". How did he know that, was he there? I was so naive I took his word for it. My children were large and I was small and all three were SD. Maybe asking those questions made the doctor more cautious during delivery, I don't know. I've met 2 OB's that were not nice to me. I did not understand why they were so nasty and obnoxious to me. Now I think it's because I reminded them of their mistakes or possible mistakes.


Kath robpi/adult
UBPN Board Member.


Message was edited by: Kath

[Ben's Dad]

Kath,
I read your post and see Mare's post above and makes me think..it's incredible..in 65+ years, almost nothing has changed. There is absolutely no impetus for the medical profession to change it's ways...as long as BPI's go unreported. They continue to consider them a nuisance and as part of their "cost of doing business", as one lawyer told me. I met someone who works for the CDC in Washington about 2 weeks ago...maybe we can renew our efforts with help from the inside. Honestly, I doubt very much that the AMA or ACOG would give us a minute of their time or consider any request from UBPN with any legitimacy. If there is anything I can do, let me know.

[Kath]

Lenny
I e-mailed you.

Kath