United Brachial Plexus Network, Inc.

Our little buddy just got back from TCH seeing the "dream team". She is severe bilateral obpi and Dr. Nath said she is the severest obpi he has seen. We found out she has to have a surgery next summer (she is 4 years old and this will be her 3rd surgery) where they remove a muscle from her leg and transfer it to her arm (her severest is her left, it basically just hangs). Does anyone have any info on this surgery so I can give to her mom?? Her mom is soooo sad, she has become one of my dearest friends. I hate to see her this way, I cried when she told me. And how does this affect the leg?
Also, has anyone noted their child's total growth (height) stunted with a obpi child? Just curious, this little girl is short (my 2 1/2 year old is taller than her) but we are hoping and thinking she may just be really petite.
Thanks for any info!!
It is 70 degrees here (finally, the sun!! I totally think I have seasonal affective disorder- I have been grumpy for months!!) so we are heading out to the swings!!
G'day!!!
Natalie

This would be the gracillus muscle transfer. Check out francines website and look for Joceys page. Also the post a couple of weeks back "To Ivelisse or Francine"

Hi, my name is Layne and my son Ian was born on July 17, 2002 after an extremely traumatic delivery. He has a very severe bp injury to his right arm. We live in AZ but traveled to TCH in January for his primary surgery. When Dr. Laurent saw us before the surgery he said that Ian was so severely injured that he could try to go in there and make it worse and he would not be able to. The first surgery went well but Dr. Nath said that Ian "Is not a large child in terms of nerves." so they did not have enough nerves to graft into his hand. They say he will need at least 4 more surgeries. They were not very helpful to me in terms of telling me what I can expect. I would ask Dr. Laurent what the other surgeries entail and all he would say is that I need to be patient. I truly do understand that, but what I was trying to convey to him was that while I know my son will never be "normal" in the sense that he will have two arms that function fully, I need to know what I can expect, even in loose terms. This has been very difficult to deal with and it is even more difficult to deal with something when you have no answers. I have no clue about any of the other surgeries except that they are "muscle transfers". Maybe that is enough for some people, but I know nothing about this... I have never had any health problems neither has my husband or my 2 girls. I am trying to educate myself and my family. Am I correct in assuming that there will be no more nerve grafts for his hand? Will his hand just wither? I am just frustrated because I want to do everything in my power for my little boy, and I am not getting the answers that I need. Dr. Nath was very nice, but I only saw him before the surgery then he called the recovery room afterwards to tell me about Ian's hand. Dr. Lee was wonderful, but of course she was not in the OR. I really do understand that this is all about patience, but it can't hurt to gain knowledge. I am sorry if this didn't make much sense, this is the first time I have ever even been to this forum, much less posted! I appreciate any help that anyone can give me. I have been pretty good at dealing with all of this so far, but now I find that I am withdrawing from my friends a bit more and I am just feeling overwhelmed. I think the fear of the unknown is getting to me. Thanks in advance for any help.

These are questions your specialists should be answering, this vagueness must be very worrying and frustrating for you. Get a second and even a third opinion from other doctors as soon as you can, you shouldn't just be told to 'be patient' that's ridiculous.
Good luck for your angel

Layne,

I am so sorry to hear about your son.
The muscle transfer surgeries that the doctor is speaking of are often called "secondary" surgeries. I don't have any experience with them myself, as yet, but there are many families on this board who have lots of experience with them. I would assume that Dr. Laurent cannot tell you exactly what your son will need in terms of muscle surgeries until they see how much recovery he will get from the nerve grafts. Every injury is different.
However, there are lots of families here that have had multiple surgeries and can share those experiences with you.

If you will post your story on the board under its own heading you will probably get more views and more responses. I know there are many people here who can answer alot of your questions and who have been where you are now.

Good luck to you. I will add you to my prayers,
-Stacey

thank you both for your words. I did post it as a topic, I am hoping that all these great people with more knowledge and experience than me can really help calm my nerves... I appreciate you guys for your responses.
Layne

Hi Natalie M.

Jocey had the surgery a year ago the name of the surgery is Gracilis Muscle Transfer. If you want more information you could email me ivelissemor@msn.com or call me 281-861-9313 Jocey had total avulsion c1 to t1. We live in Houston too.

Ivelisse