United Brachial Plexus Network, Inc.

Hello,

My name is Shendra and I'm new to this site. However, I'm very familiar with Erb's Palsy or brachial plexus, because I have a 5 yr. old daughter that was injured at birth. Prior to her being diagnosed, an xray was taken to see if her arm was broke. Unfortunately,it wasn't. So, that's when the Dr. told me, it was Erb's Palsy and I asked what's that and what does it mean? I had never heard of it and couldn't believe it. I mean, I had done all I could do to make sure I had a healthy baby. Anyway, she started PT/OT when she was 2 wks old and is still receiving therapy. She is now getting ready to have capsulodesis surgery and mod-quad or Biceps plus quad in Houston. It's 3 surgeries but 2 can be done at once. If you have a child that has gone through these surgeries, please share your experience and outcome.

Thank you.

Shendra

hello and welcome!

My 4 year old Maia has had 3 surgeries - she has a left obpi. We went to TCH for all of them and had excellent (if not miraculous) results. We're very pleased to say the least.

I have a ton of stuff written up about Maia's experience. I also have travel information and a great page on What to Expect on the day of surgery. It's all found at
http://www.injurednewborn.com/maia/homepage.html

Maia had primary and mod quad and capsulodesis. I'm glad to hear that they can combine some of the procedures because recovery takes a while and the splinting time - well if you can do it at one time then there's less time in the splint in the long run right?

What does your daughter think of the concept?

And where do you live? Wondering if it's possible for your daughter to meet up with some other kids before the surgery? check here http://www.injurednewborn.com/gatherings.html

When is the surgery planned for?

On Wednesdays we have a chat at 10 pm EST - it's at http://www.injurednewborn.com/chatroom.html. We have a wonderful group - different every week and there are many parents in there whose kids did have surgery. Come sometime and ask us a ton of questions ok?

wishing you and your daughter the best,
francine

Francine,

I really appreciate you sharing with me and is glad to hear everything went well for Maia. Well, when I mentioned surgery to my daughter, she started saying, I don't want to have surgery, I don't need it, and began to cry a little, which really made me wonder is this the right thing to do. She has a right BPI, but has really come a long way. At birth, she was paralyzed in that arm, but now she uses it quite well considering. Anyway, the surgery is scheduled for 7/24 at TCH. Her exam will be done on 7/22. We live in NE Atlanta. I'm going to check out those web sites you recommended. Thank you so much for sharing and responding. I wish Maia continued progress/success.

Shendra

Shendra - my heart goes out to your little girl. There is a post on here that talks about child life specialist at TCH. Maybe this would be something you could ask for in advance so that she might feel better about the hospital and what's going to happen?

Also - maybe your daughter would like to send me a picture of herself for www.injurednewborn.com?

keep in touch,
francine

Im curious about the recovery your child has made up to this point at 5 years old-
blessings- mary