United Brachial Plexus Network, Inc.

some thoughts...
1) After a bpi occurs what should parents be told?
The cause, what was done to prevent it, the general protocol for the injury, the varying prognosis, the important things to watch for (movement where and when, either positive or negative)....

2) What information should be provided to the family?
See above..I guess initially they should be told that the child was seriously injured during the delivery and after the mom has a chance to recover and comprehend information, be told the details above.

3) How should things be handled?
not sure what you mean...truthfully is always the way it should be handled in my book.

4) Should the family be offered support, if so what and by whom?
The family should be offered support for navigating the varying resource agencies that are available, as well as a connection to a local BPI support group. Also, I think no child should leave the hospital without a PT evaluation, ROM exercises, and an appt set up for neurology and BPI specialist. Also, a general management plan for the injury should be started by the pediatrician (and shared with the family) with timeframes for recovery (like see a BPI specialists at 3-6 months for nerve evaluation, 15 months...or whatever...geez wish there WAS a protocol in place!!!! Maybe that could be a goal at the workshop!!!). I know it won't be exact, but it would help the parents understand the injury, what to look for (are things getting better, worse...), key timeframes, etc. I didn't even know there were surgeries beyond the nerve surgery until my daughter was 15 months!


On a side, in my hospital the nurses and dr's had differing viewpoints on that front...the docs said hold it still and wait for a PT evaluation (which didn't come until my child was 5 weeks!!!!), the nurses did ranges behind their back but I was hesitant since the dr's were saying not to do them. They just didn't know what the protocol should be, so it was like a cover their butt thing....pass on the decision to the PT. I had to find the PT also, which was really hard to do considering I was recovering from a 4th degree myself and was in the hospital with my child for 2 weeks.

5) What should their ob/gyn tell them about the injury?
I can't answer this. Personally, I'd rather hear the details from the neonatologist.

6) What should their ob/gyn tell them about the causation of the injury? I cant' answer this, I'm too angry.

7) What information were you personally provided with?
I was told within hours that my daughter had Erb's Palsy (inaccurate, but a start), I was also told the delivery was complicated by SD. I was told she had several other injuries so this was just one of a laundry list of things she was being observed for, and I have to say at the time one of the least of my concerns in comparison to the other things (CP, stroke, etc). Other than that initial discussion, the rest of the information was basically to defer to a PT. I had no instructions for it when I left the hospital. The pediatrician (whom we saw the day after discharge and about 2x a week for awhile) recommended the PT, but I had to schedule. It took awhile, but I didn't feel a huge sense of urgency (again, my own recovery was difficult and my daughter had a number of injuries that we were concerned about). Looking back, I wish I was told how critical those early ROM are, how critical it is to get to a PT ASAP.

8) What information were you not provided with, that you feel you should have been or that would have assisted you?
While I was told within 2 hours of her birth, I really was in bad shape myself. I wish I had written descriptions of what she had told me, and more detailed information as I said in question 1. It wasn't until I was able to look it up on the internet that I really understood what the injury is and how it should be managed.


9) Were you provided misinformation or lack of information altogether? See above for lack of information. Misinformation would be that it would resolve on its on in a few months....and boy did I cling to that belief to the detriment of my child in the sense that I didn't have that sense of urgency.

I am so excited for you guys going to this symposium and wish so badly that I could be there!!! Good luck being our voice, I know you'll be serving the community very, very, well.

To all the families participating, thank you for sharing your experiences and making what I know will be a huge impact on the medical community in understanding the complexity and severity of this injury.

We want a full report when you get back!!!!

Thanks for the additional input Peggy and Mike! It is much appreciated.

Mike, you are SO very right. This is a very special and unique opportunity. You are right, Dr. Belzberg is one of the main players behind this meeting. I wish you could fly out to thank him. Hats off to Dr. Belzberg!!! And big thanks to Johns Hopkins and the other staff involved. They did not have to do this and they certainly did not have to include us.

Let's hope and pray that this is a positive and productive experience for all, and that new steps forward will be taken. Wouldn't it be great if this was the beginning of the medical community truly working together? Wouldn't it be wonderful if our bpi community knew a group of medical professionals actually cared enough to step up to the plate and help improve communication and treatment for the bpi population? What if other doctors were committed and active in helping to truly prevent this unnecessary injury? Gosh, now I feel like I am dreaming. Nothing wrong with HOPE I guess. Let's just keep our fingers crossed. Thanks again to Dr. Belzberg and the other doctors and staff from Johns Hopkins!

Lisa

We were told nothing as far as discharge instructions. Things would be fine in two weeks a nd that is it. I found out from an aquaintance whose child was injured six months prior at the same hospital by the same group of doctors about UBPN !When at two weeks I showed them the BPI information that I got off the internet....they said that it was mis information !!

I think they should tell you whats wrong as soon as they know ...I was told his arm would be fine in a day or two ..then when david went for his check up at two weeks his doctor told me to take him to childrens in boston .when my ob found out we where going he asked if the doctor there would send him a full report on him ( i thought thats nice I was WRONG )I also think that when you go to a place like childrens they should have a group of parents and some kind of support group ( the doctors there are great but sometimes you just need to know your not alone in this )I think that can help you ..every step is hard , the waiting is hard ,the not knowing is harder.and with miss information i think moms blame them self for something thats not our fault and that also makes things harder .oh and what the hosp gave was a little sling for his arm and told me dont let it hang behind and he'll be fine.....two surgerys later and we are still waiting

i dont know how it happenped but my message came upunder null should have been davids mom

Lisa

You must be nervous to attend this meeting. Looking at all of the excellent suggestions in the replies to your question, I can't imagine how you will express so much in a limited amount of time.

Please let the medical community know that the patients and families need better communication. I truly believe that communication is almost always the problem with any relationship including a patient physician one. The obstetricians should all be made aware of the UBPN and the various specialists who can help them when a plexus injury occurs. Rather than try to hide it, something that often ends in a legal problem, deal with it and get the child expert help immediately.

One of the main causes is dystocia and it seems that the meeting you are attending is directed at understanding or even preventing nerve injury from it. I hope that any new information will be made public either by you or the doctors. It would be so great if you could have a partnership with them for the prevention program at UBPN. Let’s all work to together to try and limit the number of plexus injuries.

Finally, I agree with Mike, my goodness do we owe gratitude to John Hopkin and Dr. Belzburg. I can't imagine a doctor actually wanting to have patients at a medical meeting discussing a problem that is so controversial and often ends up in court. He is either crazy, overly confident or one very amazing person. If he is anything to look at, my husband is in big trouble.