United Brachial Plexus Network, Inc.

Hi. I gave birth to a beautiful baby girl last month 12/08 with a BPI with nerve root avulsion. I have been just trying to educate myself on her injury and am so glad I found this forum! Does any one have any advice that you wish you would of known, what can I expect for my daughters future, surgical outcomes, ect. Any info would be great! Thank you in advance and I'm looking forward to getting to know you all!

I'm sorry to hear your baby girl was injured. Get her to a specialist for an evaluation and I strongly recommend you get at least 2 or 3 opinions. Go with the Doctor you feel most comfortable with. We see Dr. Kozin at Shriners in Philly, he's great. If you go with Shriner's they are free of charge, there is never a bill for any services you receive from them. We were also able to get help with the travel expenses through the airlines and the local shriners. I've also seen a couple other specialists, but felt Dr. Kozin offered my son the best options. You will find tons of advice on this site, I was glued to it for my whole maternity leave. My son is now almost 14 months and has had 1 surgery so far. Therapy is also very important, make sure you find someone that has experience with this injury if you haven't already. You will probably have to travel to get the best care, we found that a bit overwhelming at first, but we're used to it now, it's just what we have to do to make sure he get's the best care possible. Good luck to you and your daughter.
Meredith


Message was edited by: Kaiden'smom

I, too, am sorry you had to find us. But, you will find us a very welcoming community.

on this website there is a medical resource page. Please use it. We have questionaires that the docs filled out-so you can learn a little more about them. They are almost all very email friendly.

I encourage you to get multiple opinions. I consistently work with three doctors for Juliana's care. I encourage you to learn the physiology of the shoulder, arm and hand. And to give yourself a primer on neurology. The world of bpi treatment is changing all the time and there is tons of information that the docs will give you. It is easier to cull through it if you understand the basics.

Take a notebook with you to your doc visits. Write down the questions you want to ask and their responses. If you email, print the emails....additionally, get copies of every report of every test that is done. You have a right to these medical copies, don't let them think you don't.

Get therapy thru your local birth to three program.

And remember a couple of other things: don't forget to have fun with your daughter. You'll hear parents talk about how they lost years, I know I did. I was so focused on her ARM...i missed out on HER.
also, don't forget to take some time out for you. It will be hard to do, the doctor appointments, therapy and research will be overwhelming...but do it. And remind yourself it is YOUR time. So no shopping for the baby!

Ask tons of questions.

Oh, and as for your daughter's future...it is very bright! Juliana is now 9 years old (where does that time go?). She is my youngest of 4. She is intelligent, very funny, a little shy until you get to know her, an excellent swimmer, a fabulous tennis player (her coach is training the next Steffi Graf!!), a fan of wii, a kid who wants to watch more tv than she should... You see, she is just a 9 year old...in my eyes, the most fabulous 9 year old on the planet! I didn't believe it when I was told it, but she will be everything she wants to be.

good luck, ask anything,
claudia
ubpn board member

I'm so sorry we have to meet like this my name is mare and my son is Frankie he turns 16 feb 1st. His nerves were all pulled out at the root and while good doctors and therapy are important it is also important to raise your baby girl as you would any other child I always told frankie there was no such word as can't and that others opinions don't matter its what you think about yourself that counts and he has grown into a confident young man who has learn to do everything one handed. At first there were questions but he has learn in time to compensate so well that people don't even realize he is only using one hand. And last year he started working at a garage fixing cars with a friend of mine and just got sponsored by a paintball company to play in competions Just remember as they get older let your child grow and experience life trying things that she wants no matter how scared you are.Don't let your fears hold her back. I hope this helps Best Wishes Mare

Hi, my names Evan, I'm 18, and I have a left Obstetrical(birth) brachial plexus injury. Im very sorry about your daughter and will send my prayers her way. There is a very short amount of time that you have to have an effective surgery done that will allow your daughter to gain use of her arm in the long run so now is the time to do research. There are a few different options that you have and there is not one option that will work for all because every one of these injuries are different. I had several root avulsions and a few that were stretched and torn and i had nerve grafting done when i was four months old. This surgery was extremely beneficial in the long run as my arm now has partial ROM and almost full use of my fingers so there is hope! If I had not had the surgery my arm would have been completely paralyzed and now I am able to do anything I put my mind too and Im sure that, provided a large amount of encouragement, your daughter will too.

This is something I live everyday so if you have any questions at all feel free too email me and my mom said that she is also available to answer any question that you might have.

God bless,
-Evan J

Shannon
You have found the best place for advice, support and information. I am birth injured and a wife, mother and grandmother. I have a robpi and can promise you that your beautiful little babe is far more than an arm.
It's going to be a tough road and you have to become a medical expert regarding bpi and all the necessary treatments. Please take Claudia's advice and take time to enjoy your baby and make time for yourself. She will do well if her mommy gets some TLC and is not feeling so anxious. I was told I could do anything I wanted to as long as I put my mind to it... And I have...

Try not to get to exhausted and frantic... easy for me to say... I'm obpi not the parent and I think that being the parent may be harder sometimes.

Kath robpi/adult

Thank you all for your encouragement, advice and kind words. I am so very happy I have found this website for support and information.

Hello,
I'm sorry your baby was injured. I just want to say that my biggest regret with my son at that age was my frustration. My son, whose now two, would cry and cry. Especially when I would lay him flat in his crib. We ended up letting him sleep in his car seat until he was a couple of months old. Was the only way he'd stop crying. When I held him he would sometimes jump as if he just got bit by an ant and then start screaming. In hind sight I realized it was painful for him to lie flat and the " ant bites" were the nerves in his arm firing randomly. I feel so guilty for getting upset and frustrated with him for crying. Also, take care of yourself so you don't miss any moment of your baby life. There is a grief process you go through and it's best to not go through it alone. Post traumatic stress disorders and depression are VERY common in mothers who've experienced difficult births and who see their children injured. I recommend counceling for yourself and your spouse, if you have one. Even if you don't feel you need to see a councelor. It's very easy to get caught up in the injury and before you know it you've missed out on a lot of your baby milestones and you're mad at the world. I wish I had known these things.
Breonna, joseph's mama lobpi 2 yrs

Hi Shan, I am also a new mom of a beautiful baby girl, Lily with a bpi injury. She was born 12/10/08 so we will be going through this together. We should definitly keep in contact to help each other through. My baby girl is going to pt/ot every other week now and attending a brachial plexus injury treatment center in Akron,OH. She will attend her first clinic March 3rd. So far the pt has made two braces (the first one rubbed) and has used kinesio tape twice. What have you been experiencing? Any movement coming back?

I also have a girl. She is 18 months old and has had 3 surgeries. She also had avulsed nerves. She had nerve transfer surgeries and they have turned out great! Befor her surgeries she did not have elbow movement and very little shoulder activity. She can now reach her head, bend her elbow, clap her hands, and do anything any other child her age does, only a little different. She is still not 100 percent but we are so pleased with her recovery. If you are in the Ohio area you should give cincinatti childrens a shot. Amaries surgeon, dr.cornwall, moved there a few months ago, and he is excellent. In fact we even thought about making the 8 hour trip just so he could stay our doctor! We now see dr. kozin at shriners who is also excellent. We have been blessed with having great doctors and I am sure you will also!!!! Keep us updated!!!