United Brachial Plexus Network

My daughters PT is doing an information booklet for parents of newborns with OBPI and she asked me this question:
What do you wish you would have known when your baby came home from the hospital?

I wished I had an understanding of the injury and been given doctors to go to.
Does anyone have anything to add?
Thanks for your help!

I wish we would have known a few things:

1. To go to a specialist, and who those would be.
2. That in most cases it won't "just get better" on it's own
3. That pinning her arm to her shirt was about the worst thing we could be doing.
4. Start PT ASAP.

Cheri, Mom to Katie, 3, LOBPI

Bumping up!

Where to find information. I spent hours at the library with no luck, eventually I found the forum here at it was a God send.

I have to agree, we were told my son's arm would heal itself on its own in 3 months....so we waited. No real explanation of the injury was given.

Information was impossible to find. We found out so much more since his therapist directed me to this website. But that was after my son was already 6 months old. I'd have like the hospital to print out all types of treatments from surgery to chiropractic.

I'd like to see more information on BPI's in ALL the pregnancy books.

I agree with what everyone else is saying, primarily how important it is to see a specialist early. We were told that Kalyn would get better right up until about 6 months, when we were told she wouldn't and we should see a specialist, the specialists all seemed to have thought we should have been to them earlier.

Additionally, any PT sugestions/exercises for the parents at home would be good.

To Katies Mom - Why was "pining" her arm the worst thing you could have done? We were told to do the same and noone ever told us we shouldn't have.

Actually, pinning the arm is not that bad if your child had a broken collarbone during the delivery. If the collarbone wasn't broken, it is better to get the arm moving. I still don't think it is the "worst" thing, but it does show a lack of understanding of the injury. We pinned Juliana's arm for 10 days, until we went back to the orthopod to see about the broken collarbone. Then we unpinned. Of course she had a flail arm...so that created new problems.

and as to the original post... I wish I had known what was wrong with her arm, instead of being lied to and told "its just a broken collarbone, she'll be fine in a week." and besides that, the phone number to the birth to three program, so I could get an evaluation immediately and start ot and pt.

claudia

I think it's impossible to list in a booklet all that we need to know (all the treatment possibilities, etc.) although I think it's so great that she is doing it anyway.

I truly think the most important thing is to find a support group (online and/or a local group)- then you really have access to all the info (and also the emotional support is so vital). So some info about how to find the local group if the booklet is just for her area or what key words to use to search the internet for a group.

My hospital and neurologist amazingly actually gave us a lot of info about bpi (although they did say the baby would probably recover), but I still felt lost until I found UBPN.