United Brachial Plexus Network, Inc.

My niece was born on 2/8/08 and has been diagnosed with erb palsy. We as a family are struggling to understand everything that is going on and what we should be doing to make sure that she is able to recover from the trauma she has suffered. The delivery was long and painful for baby, mother, and father. So now that we have a clear diagnosis and idea of what we are dealing with we are looking for any suggestions/tips/advice that anyone may have.

Well, welcome to the "club". I guess the best advice I could give you is to keep researching. Also, seeing a BPI specialist. Our specialist saw us for the first time when my son was 2 months old. We also started Occupational Therapy at about one month. The hardest thing is to not have too many expectations. I heard 3 months and nearly freaked when Titus didn't have any movement yet at that age. He gained movement at 4 and a half months. Now it looks like he may recover enough to avoid primary surgery. But, we still don't know. He has an appointment today with BPI specialist, and we are hoping for more answers. We're doing botox with him and that is helping so much! You will learn a whole new language that you didn't know existed (I could have gone my whole life never caring what supination is or how it related to my daily life ). Anyway, I got off on a tangent! There are different degrees of injury. Outcome really depends on the kind of injury that's involved. Enjoy the blessing of the little one, even in traumatic times they are still blessings! Congratulations on being an aunt to an adorable little girl.
Jamie (mother of Titus 6 months old LOBPI)

Thanks for the encouragement. I have looked around the message boards here and there is a lot of experience and information that I have found elsewhere. Do you have any other ideas for other sites or organizations that we might turn to?

Yeah, I would check out www.brachialplexuspalsyfoundation.org and there are some others as well. The message boards here helped me a lot, too. I am always finding new information here.
Jamie (mother of Titus 6 months LOBPI)

Congratulations on your niece !
hope to hear from you soon, keep us posted.

Congratulations on the new little one!! Here is another link for an informative site. http://www.injurednewborn.com/
Our site here also has wonderful information and a wealth of experience from people who have already followed the path you are just beginning. Don't hesitate to ask questions. There are also links at the top of the page for BPI specialists, which are very important when treating these injuries, resources and information. But nothing beats the knowledge, understanding and experience of those that have been there and done that.
Sue

WELCOME AuntLaura!

There are no dumb questions on any of the Message Boards--you are welcome on all of the Forums.

Another very good website is: www.twolittlemonkeys.org
I love it.

Carolyn J
adult LOBPI/age 69 & counting....


Message was edited by: Carolyn J


Message was edited by: Carolyn J

Laura -

I admire your proactiveness (is that a word?)...getting as much information as early as you can will be extremely beneficial for everyone involved.

Try not to get overwhelmed or frightened by the things you read on the internet...and please keep asking questions.

I would be happy to talk to you via phone if you'd like.

And last but certainly not least, congratulations on the new addition to the family!

Andrea

Hi Aunt Laura,

this place has been a great place of support,learning and love since I found it a year ago. My daughter was born in April of 06 with a right obstetrical brachial plexus injury, she has since had the primary surgery (nerve graphs) and is one year post op and doing great!
so many people here would be willing to answer any questions you have....I'm so sorry that his has happened to your niece. take care and feel free to email me anytime and I'd be happy to share our experiences with you.
Dawn, mom to Cassidy 22 months ROBPI

Aunt Laura,
My name is Valarie and I have a injury of Brachial Plexus Erbs Palsy like your niece. I have had this injury since birth. I completly understand what your family is going through, my mom went through the same things with me and I have found "unique" ways to over come the "challenges" that people with BPI go through daily. If you want me to send you some, feel free to email me at vchampionsablatura@islander.tamucc.edu or if your have any questions.