United Brachial Plexus Network

HI,I HAVE A 4 MONTH OLD WITH BPI FROM BIRTH.I AM SO GLAD TO HAVE FOUND THIS WEB SITE-I THOUGHT I WAS OUT THERE ALONE.WE ARE SEEING DR ANN SCHWENTKER IN ATLANTA-
HAS ANYONE HAD ANY EXPERIENCE OUT THERE WITH HER? MY SON IS GOING ON 4 MONTHS AND STILL HAS NO USE OF HIS DELTOID OR BICEP.. CAN SOMEONE PLEASE TELL ME IF HE IS EVER GOING TO GET BETTER? THE HOSPITAL TOLD ME THAT HE WOULD BE FINE IN ONE WEEK AND HE OBVIOUSLY IS NOT FINE.
I FEEL SO HOPELESS.WAS THIS THE DR FAULT OR DO THESE THINGS JUST HAPPEN??ANY INFO WOULD BE GREAT

Cathy,
Welcome to the UBPN message boards. I hope that you will find a great deal of support and information here.

Start reading through the links from the home page; if you don't/haven't received the UBPN publication of Outreach, please email Nancy Birk, UBPN President:
nancy@ubpn.org
and request to be put on the mailing list. It's a wonderful resource for information, as well!

You are not alone.

Peggy

Hi...and welcome.

They told my Mom my arm would be better in a week or two also. I am now 37. Thankfully there is a TON more they can do to help now, that they couldn't when I was little.

Neither you, nor your little one are alone.

Adult, LOBPI

They told us about 4 to 6 weeks and she would be fine. Well She has avulsions and stretches and its 3 + yrs later. Please see a doc that knows bpi and get it confirmed. Then get lots of therapy..

Hi Cathy - I too have a 4 month old with RBPI. I had an extremely difficult delivery and do think there is fault on the dotors end. When she was diagnosed with it he told me it would be better in a month. Well here we are 4 months later and she does not have full function. We have another EMG scheduled in 3 weeks to determine if surgery is needed. At birth she had wrist and finger movement and now she is really starting to move it and can almost get it to her mouth when she is sitting up!! Feel free to email me blades01@localnet.com. Glad you found this board, it really has helped me answer many of my questions.

Cathy;
Welcome and congrats on your new little one. Please don't forget to enjoy your precious baby boy even amongst all of the roller coaster of emotions. He is a gift and the Lord wouldn't have given you a baby with BPI if he didn't think you were perfect for the job!! You're not alone!!
PLEASE go to a brachial plexus specialist ASAP!! The doctors also told us that Katie, now 3, LOBPI would be "fine" in a week or two and we foolishly believed them. We have since learned that had we lost precious time due to his misguidance. If your son does not already have it, Physical Therapy will help tremendously.
Whether it is the doctor's fault or not depends on each individual situation.
This board as well as the people on it are very knowledgeable and extremeley helpful and friendly, so don't be afraid to ask questions and seek advice here! All of our experiences are different and I think it's safe to say most of us are more than willing to share ours with you!
Be brave and have lots of faith! Best wishes to both of you!

Cheri (mom to Katie, 3, LOBPI)

Hi Cathy
Welcome to the message boards I am glad you found us and are no longer alone with this very complicated injury.

I am birth injured and then did not tell my mom they injured me. They told her she was lucky I was alive...

I am a mother and grandmother just thought I would tell you that to reassure you that our life becomes normal at some point.
We (injured babies) are so much more than and arm. Enjoy your baby when you can.
I think being OBPI made the bond between my mother and I so much stronger.
She devoted so much time and energy to me I will forever bless her and be grateful for it.
I was treated like any normal child should be.
She enabled me and never disabled me.
She gave me wings to fly.

Kath

Kath, I love what you wrote! I too feel that Brittney and I share something deeper - the injury - and of course I love my little Sabrina but there is a certain bond or something between me and Britt - all of the therapy and trying to make her stonger.
Cathy - everything will be OK!! Your child will grow and become stronger and help you. Brittney is now 13 - wow! - I am driving car pool to soccer practice today - life is normal!! Me and three of her soccer friends - she is doing OK - the first years were hard until I realized that she would do just fine....
I am glad that you found this siie and that you know that you can come here anytime and just vent or ask questions. Welcome and ask anything and hopefully someone will offer the advice you need!:)
Christy

Cathy:
I want to ditto what Christy said. I think I have an unusual bond with my Juliana. She is 5 1/2, has had 3 surgeries and is a spitfire! And yes, life is pretty normal around here. She is the youngest of 4 kids (and misses them terribly as they are away at camp) and she really is just a normal kid.

I encourage you though, to go to the medical resources directory and talk to a number of other doctors. No one here is a doctor, so we can't tell you that your child "will get better". Even the docs don't make prognoses like that. However, biceps function, against gravity (that is sitting up), is a functional marker that all bpi docs look for. Since you are in Atlanta, you are lucky to have many wonderful doctors on the East Coast. Start calling and emailing and you will see that bpi docs really want to help.

good luck, and ask questions, questions, questions; you will be amazed at how supportive our community is.

claudia

Welcome! You've come to a great place with lots of help and resources. Everyone here is great and you usually will get a lot of different answers to your questions.

Laura
Mom of Tyler, 7 years old, ROBPI (right obstetrical brachial plexus injury) - you will find a lot of these little initials meaning all sorts of things....just ask.