United Brachial Plexus Network, Inc.

I know that I'm really not supposed to be here but I figured that since you are the experts...

I have a baby who was born on January 18, 2002 with BPI. I have only known of this injury since January 19th! I am doing all the research I can and learning what I have available to me so that I am able to help my daughter (Avery) as much as possible.

We have seen a physio twice (once in the hospital on Avery's third day).

Avery has minimal movement in her fingers and wrist (right arm) and nothing so far in her elbow or shoulder. My question is this...what do you think it feels like for her? At first I didn't think that she felt anything but now it seems to hurt her when I move her arm. I am trying to do range of motion exercises with her but I don't want to hurt her! She loves to bath and her arm floats freely and it doesn't seem to bother her at all.

What does BPI feel like? Is it different for everyone? is it stinging? aching? tingling? I so wish that I could know what my little munchkin is feeling.

Thank you very much for this and any other advise that you think might be useful for me.
Bonnie

Hello Bonnie,

For starters you are not butting in anywhere. We all belong on this site. I am a tramua BP but I still post on all the boards.

You have most certainly come to the right place for input on how your baby is feeling. I can only offer from a tramua perspective. My injury was over 10 years ago. I have limited movement in my fingers, hand, wrist and arm. I have sharp pain at times and a dull ache at other times. Truly depends on what I am doing. The water is a wonderful thing for a BP person. I understand why she loves her bath. While in the water my arm is weightless which takes the pressure off my neck and shoulder. That is a wonderful thing!

If you want more insight from a TBPI let me know I am more than willing to tell you about an average day in my crazy life!

Hi Bonnie,
I am 51 years old, OBPI left arm.

No,you are certainly not butting in. Yes, we are all injured to a different extent,and the first thing you should do is to find out the extent of your daughter's injury. The first thing that I ever read about my injury was in a medical book at the library where I work. It stated that a good deal of obpi injuries are bruised nerves and that these children make complete recoveries. My best friend's daughter had this
type of obpi at birth, and her arm is normal. The more serious injuries are torn or avulsed nerves which cause more permant damage. I'm sure that you will find several helpful links from the UBPI network...one word of caution. It is very easy to "scare yourself" when reading alot of medical literature,etc. so make sure to discuss your concerns with your doctors and therapists.

There sure is alot of advanced treatment and therapy for this injury since I was born in 1950....but such a shame to hear that this injury is still happening today! Before I found this message board not only did I believe I was alone, I also was under the false impression that because of the advancement in diagnostic equipment and increase in Caesarean section
deliveries, this injury was now obsolete! Boy was I ever wrong!

Take care and welcome to the message boards...there is alot to learn and share here.

Blessings to the little one,

-Stephanie

Congratulations on Avery's birth. And at the same time I'm very sorry to learn she was injured.

There is some good information on here that might be helpful for you at this time. The first sheet is one for parents of injured newborns. The direct link is

http://ubpn.org/awareness/A2001Rnewparentguide.html

Then - the rest of the awareness documents are found here:

http://ubpn.org/awareness - look in the Birth Injury section

I think your question about what she feels is a very good one but only you as the mom will really know. You'll be able to sense when she is in pain. About other sensations - it's hard to say - it really depends on the severity of the injury- whether or not the sensory nerves were damaged, etc. Also, many of the adults (no offense adults) did not have access to the surgical repairs and other modalities that are now used to help. So to compare what an adult feels to a baby- well it's just not the same.

Playing in the water is wonderful - I'm so glad she enjoys it and yes, water (if warm) is very good for pain relief too.

She's a tiny baby yet - there's still the hope for spontaneous recovery. Of course I don't want to give you false hope- but the statistics do show that a very high percentage do actually have spontaneous recovery - so I will pray that you sweet baby ends up being in that column!

Kissies to your sweet little Avery!
-francine

http://www.injurednewborn.com
http://www.injurednewborn.com/maia/homepage.html

Hi Bonnie

You are not butting in.... welcome to the boards.

I am 62 right obpi. And the question about pain is important. I think Stephanie said it all...all the feelings about this injury and the shock to find out it was still happenning today.....

I also thought I was the only one with this rare birth injury for 60 years.... and learned so much from this website and all the bpi adults and parents... Francine has a great website....

Please see a specialist who has treated other obpi children... check on the General Board to see if anyone is in your area perhaps they can tell you of a local bpi specialist...

Congratulation on the Birth of Avery .... Please don't ever feel that you are butting in.... we all float from one board to the other ... like someone said its like turning a page....
many post on all three boards......
Ask away...
Kath

Sorry about that GUEST thing I forgot to sign in! OOOOPPPPPSSSSS Seriously, I am a left TBPI and am always willing to talk.

Joy

I love the name Avery, it is so pretty!

Hey Bonnie, congrats on Avery, beautiful name for I'm sure a beautiful baby. Born the same day as my oldest, I'm sure Avery is special.

Like Kath and Stephanie, as an older statesperson, 50 years now left OBPI, don't feel like you're budding in here. We can be very valuable to you, so ask any question you care to. Some one will answer.

((((( A left BPI hug for Avery!!! Take care.

Bonnie - I know exactly how you feel right now and what you're dealing with. My daughter, Emma, was born 12/17/01 and was injured during the delivery. She was diagnosed with Erb's Palsy and can't use her right arm.

We have been working with her and running around like crazy for the past 7 weeks to learn everything we can to help her. Early intervention is essential.

My best suggestion is to really work on the range of motion exercises with Avery and see a physical therapist as much as possible. Also, contact the Brachial Plexus Program at Texas Children's Hospital. The coordinator is wonderful!!