Help with understanding what is next on our long journey

[LNyberg]

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.

[cybermomx4]

I wrote this whole thing and then realized that I wasn't signed on so I went to sign on and LOST it all UGH !
My son Brandon was born 7-17-98 with a severe BPI to the right arm. HE too had two surgeries at TCH and also a year of OT and PT at TCH since we moved to Houston before his second surgery. Although at first the Dr's told us Brandon would need four - five surgeries before he was four, he has had 2 to date and he is four and a half. I am not saying that he will not need more, but I am saying that sometimes I feel that the Dr's at TCH give you the worst case scenerio so that you are prepared. I took my son to TCH last October and Dr. NAth was pleasently surprised with his progress. I am a firm believer of the earlier the surgery the better, the earlier therapy the better. My son had therapy at two weeks old and although at time I felt it was useless, I am happy that I did it. He hasn't had formal therapy in 2 years.....just everyday around the house therapy and is doing wonderfully. As far as not knowing, I don't think that anyone knows. Nerve surgeries for the hand, it may be in the future, they may already be experimenting. They did with us, and suggested that they wanted to do Mod Quad at 14 months the youngest child they had ever done it on, I took the risk although my husband wanted to wait, and we are so happy that we did. I would trust what Dr. NAth and Dr. LAurent have told you and they may not know what is in your childs future until a little while from now. Keep your chin up....it gets easier.

[Allison]

Layne,
Welcome to the boards. My son Bradley is 13 months with a ROBPI. He has had a nerve graft at 6 months and the Mod Quad at 12 months, both done at TCH. They never advised me how many surgeries Bradley will need. I didnt even ask, part of me does not want to know. I knew that Primary and Mod Quad were surgeries that he definately did need. I try to take it one day at a time and enjoy my little guy as much as possible. Don't be afraid to call TCH and ask what exact surgeries they anticipate he will need. Jot the names down and research when you are feeling up to it. Feel free to post any questions you have. There are so many helpful people here. If they are going to do Mod Quad next, I have a great print out of what it exactly is. I can mail it to you. Feel free to e-mail me @ pxy-dust@fast.net

[annedefiance]

Hi Layne, I'm Anne, mom to Ben RBPI. It's hard, isn't it, you want to know so bad, but it seems as tho no one will tell you anything. We've all been there, unfortunately, the most common phrase you will hear is "each child's injury is different" and that's the truth. Sometimes the docs can't tell us with any certainty what to expect for our kids. I'm sorry they were unable to graft Ian's hand, but there are other options, my son has no hand use either, he's 2 (soon to be 3) and we've recently starting going to a BPI clinic here in Ohio (where we live) and Ben is going to be seen by a specialist who will evaluate him for a future muscle transfer for his hand. I can't remember what muscles they use (anyone else?) and I can't tell you outcomes, as we haven't seen them yet. Just keep plugging and keep asking questions.

Anne

[LNyberg]

I really appreciate all the help here. I re-read my post and I am a little surprized to see how negative it sounded. I didn't mean to come across that way, i have good days and bad ones like everyone else here. My gut says to trust these Dr's at TCH. I really am unspeakably grateful for the knowledge and the work they put forth for all of our children. Look at the great progress they have made. No matter what, I have a beautiful, happy little boy... he just may not be the captain of the football team! I would really love to get my hands on all the information that I can, all of you sound so knowledgeable! I can tell what a great sense of community there is here. No one that I know understands what I am going through. I have actually had someone tell me not to worry too much, "It's just an arm. He has another one." It is nice to talk to people who get how I am feeling. Anyway, thanks again for the help and I hope to learn all that I can from all of you. In return, I will do anything I can to help.
Layne

[Faithsmommy]

Hi Layne If you would like some general info on BPI, you can check out this online "lecture" with Dr. Andrew Price, a BPI specialist in NY. I found it very helpful in understanding what had happened. http://www.pediatric-orthopedics.com/Tr ... cture.html

[jennyb]

Faithsmommy-what a truly excellent link! Really informative....wish I could find one as good as this about tbpi! Thanks again :0)

[Joann in PA]

Hi Layne, I read your post and feel compeled to respond to you. Not that I have any specific answers for you other than I understand how you are feeling. I am the mom of 3 children. Our youngest son has a left brachial plexus injury. He is 7 years old. He's had 4 surgeries so far at TCH. We didnt even find out about surgeries until he was 20 months old. He had the primary surgery when he was 2 years old. I Praise the Lord you found expert medical advice for your baby at a young age. That will help him tremendously. I remember the feelings I had when our son was a baby I and believe that is what prompted me to respond to you. I felt so overwhelmed with the unknown for him. So sad inside but I didnt fully want to express that sadness. I also can relate to what you said about drawing away from friends. With each surgery I believe I withdrew from my friends because I knew they didnt fully understand what we as a family were going through with this situation. That is where my internet friends have become such a valuable resource for my well being. I made friends with some ladies back in 1997 on this message board who I know will be life long friends. We call each other, we email each other, we visit each other we vacation together. They have been there for me through it all and I for them. Finding this support group will help you through this. I can also tell you that now that my son is 7 years old I can see that he is a happy little boy who happens to only use his left arm as a helper arm. The most significant part of that sentence is he is a happy little boy. He can't dribble a basketball or throw or catch a baseball with his left arm but he tries anyway or figures out how to do it a different way...such as transitioning the glove to his right hand etc. for baseball. He loves sports and is totally into soccer. I asked him this past year what he thought about his left arm and he said it was no big deal. He said he it would be nice if it worked the way his right arm works but it doesnt so thats ok too. God is gracious and Magnificant and I truly believe that He is using this in Joey's life to mold him into who He wants him to be. We were told on Saturday that he should have another procedure done. That will make 5 surgeries with numerous procedures done during each surgery. On the way home I asked Joey what his thoughts were about having another surgery. He said hey ok...I get to go to the giftshop at the hospital! ) Kids! Ya gotta love um! ) Needless to say his attitude makes things easier for us but we've tried from the beginning to make the conversation regarding his arm light and not so gloom and doom. (Even though as I said earlier I was feeling so sad inside...it was important to me to not express that to him...to keep God and faith in Him at the center of our conversations...and it has proved by his upbeat attitude to have worked for us.)

I think this may be the longest post I've ever written! ha I hope my ramblings help in some way. If I can ever be a help to you feel free to email. Take care and God's blessings to you. love, Joann )

[JaimeC]

Hi Layne,
Well, my first thought is to e-mail Dr. Nath with your concerns. He always answers e-mail. (rnath@bcm.tmc.edu) I think you will get a lot of information in this forum,too. People here are very knowledgeable. And I know you've heard it now several times: each child is injured differently, and depending on surgery/therapy etc, recovers differently. You know that story. It's very true. I would imagine Dr. Laurent is not sure of your child's recovery because of that. I feel your frustration with that - I think we've all been there. As a mother of a 7 year old, I'm still not sure what will change in his future. It seems things change all the time. Research continues on this injury and they're doing surgeries today that they weren't doing when my son was born. It's not much of an answer is it? My guess as to your son's future surgeries is this: The mod quad - a four part (done all at once) surgery to transfer and release muscles in the shoulder area. This will help your son to lift his arm higher and maybe touch his head or at least his mouth. Many (not all) of these kids shoulders become dislocated (a result of the weak muscles and muscle imbalances - and because of the innervation problem, the shoulder "socket" doesn't form properly.) There is surgery called 'capsulodesis' to help with this. Both of these surgeries requires a splint to immobilize the arm for a number of weeks after surgery. When there is hand involvement, there are muscle transfers to help give the hand some strength and a grip. This is the gracilis muscle transfer (a muscle taken from the leg - doesn't affect leg movement - and transferred to the forearm.) There are probably more surgeries that I don't know of, but my son has had the first two, and may have the third. Unfortunately, we missed the nerve grafting.
So for what it's worth, this is what I know....hope this helps.