United Brachial Plexus Network

I am so glad to have found a UBPN and so many others who are going through the same thing I am. My beautiful daughter Lesley Jane was born on
December 22,2001, with BPI, I am just glad to have found other people who I can relate to, talk to, who understand how I may feel. I had never heard about BPI until it happened to me and I am still not sure that it has set in about what really happened if anyone out there would like to help me understand that would be great. Also if anyone could tell me if there are any support groups or support chats, please let me know because I could surely use one. I feel as though this is my fault and my husband always lets me know it was not my fault. Thank you, UBPN. Danielle

It'sa sad thing to say but,welcome Danielle.
My name is Albita,I am in Toronto,My son has a LOBPI and he is 3 months old.He already had surgery.Are you in the U.S?
Fel free toemail me,to talk and you can tell me more about you..
Be strong . God Bless

I'm so sorry your baby was injured at birth. It sounds like you have a very supportive husband.

Where do you live? There are a number of support groups in different states that are having picnics and we'd love to have you join us at one! You can go to:
http://www.injurednewborn.com/gatherings
(I think that's the url...it's at www.injurednewborn.com)

and find out the dates and details of upcoming picnics. If you're near Ohio, our picnic is next weekend, June 1st in Columbus.
http://members.aol.com/ohioerbspalsy

I am so glad that I can come to a site on the internet where there are other people that can understand how I feel and relate to me, maybe there is someone else out there that could better explain what should be my next step? My other family members had never heard of this either, so my daughter has become the center of attention with them and they call her there special baby, it hurts me so bad to see her like this and I wish I could just move her rt. arm for her, but I know that she has do it herself. the Special Clinic we go to does not believe in surgery at all they believe in self healing with Occupational Therapy. All my family is very supportive and pray for us each every day, I thank god for all the people who have been there for us and try to help us get through this rough time in our lives. We live in Kansas a very small town, we would love to come join everyone at one of the picnics.

Danielle, Hi I live in Kansas also. What town are you from? My family and I live in Garden City. I know how frustrating it is to have a child with erbs and not know too much about it, we've been down that road. Also as far as not believing in surgery.... sometimes its necessary. There are a few people whos children have not had surgery and have had pretty good results. We took our baby to Wichita and kept believing he would be ok, since that is what they told us and now my son is getting to the point where surgery would not benefit him as much as if he were to have it younger. We took him to Texas Childrens Hospital last March and now he has surgery scheduled for June 5th. I just wish we would have taken him sooner. Does your son receive any therapy? Who is his neurologist? or does he have one? You can e-mail me if you would like. aldaco@swko.net.

The first thing you should know is that you did nothing to cause this injury!!! The second thing is that you should never give up hope. My daugther was born Feb. 2001 with left arm BPI and I understand your sadness. Fortunately for my husband and I, our daughter has regained 85% use of her arm. She gets therapy 4 days a week (PT & OT) and that has been a Godsend. Although surgery may never be an option for her, it is still a battle we will have to help her fight her whole life. This website is an incredible source of information and support. I am in the metro NY area and could possibly help if you live near here. My thoughts are with you!

Hello I live in a small town in Kansas as well.

There is a picnic on June 8th and a campout.

Email me at

gayle_ruckman@hotmail.com and I'll give you more details.

My daughter is now 16 mos old and did not need primary but has been recommended for mod quad. We go a great OT in Kansas City at the Childrens Hospital there. They also have a clinic. We have been going to TCH since she was born.

Gayle

my son has a left arm brachial plexus injury. he is 4.5 months old and we live in st.louis. we have seen 2 different specialist and have chosen ours as texas childrens hospital. they have scheduled surgery in july when he is 6 months old. my son has not improved much since he was born. he has no deltoid or bicep movement. those are the muscles needed to bend the arm and raise it above your head. he has been going to therapists since he was 3 weeks old and will continue for as long as needed. i will do whatever it takes to help him. and the specialists recommend the surgery so thats what it will be. if we want him to have a chance to ever bend his arm to feed himself. it's a very sad thing. but its something all of us on here have had to deal with and we all want the best for our kids. i would strongly recommend a second opinion as soon as possible. time is very important......because muscles can start to die i heard at 12 months. timing is very important. seek more help from other doctors.we'll be praying for your daughter and the other children on here. wish us luck in july!!!!

I AM VERY HAPPY TO HEAR YOUR DAUGHTER HAS RECOVERED 85% THAT IS GREAT GOOD FOR YOU. IT'S GREAT TO HEAR THE GOOD STORIES. HOPEFULLY THE SURGERY IN JULY WILL HELP MY SON. HE HAS A LEFT ARM BPI ALSO BUT HASN'T REGAINED BICEP OR DELTOID SO TCH PLANNED THE SURGERY. GOD BLESS AND KEEP THE GOOD WORK GOING WITH THERAPY.

Danielle,

I am from Kansas too. Kelsey is 5 1/2 now. Please let me know where you are from. I might be able to help! We have been to many doctors in the state and out of it. You can e-mail me privately if it is more comfortable for you, or reply to my post. Looking forward to hearing from you,

Nancy