Intra uterine brachial plexus injury
Intra uterine brachial plexus injury
Our son was born 8-31-08 at 36 weeks. The delivery was easy. Right away at birth it was noted that he had a flaccid right arm and atrophied right hand. During the past 6 months we have been referred to MD's that have done CTMG, MRI, EMG, and nerve velocity conduction testing. So far the results have shown... A complete nerve avulsion at C5,6,7,8,T1 believed to have happened very early in the pregnancy (in utero) as evidenced by slightly shorter arm and small hand and EMG results show no deltoid or bicep muscle. We are told he is not a surgical candidate. He at 6 months has never moved his arm or hand. The growth is much slower than the other and he is also experiencing delays using the other hand. We would like any wisdom, info concerning this type of injury. Thanks we just want to do whats best for our son and learn all we can SNolan
Re: Intra uterine brachial plexus injury
Stephanie,
My only advice would be to make sure you are seeing significant experts in the field. Please check the medical resources and consider going to traumatic specialists, such as at the Mayo Clinic.
Has anyone suggested amputation in your son's case? It is rarely suggested for obstetric injury but I wonder if since your child is probably over 1 year post injury at this point, and if the avulsion happened early enough, then his brain may not even have developed any representation of his arm in the womb? In that case you may be better off making his arm the way his brain "sees" it... not there?
Kate
My only advice would be to make sure you are seeing significant experts in the field. Please check the medical resources and consider going to traumatic specialists, such as at the Mayo Clinic.
Has anyone suggested amputation in your son's case? It is rarely suggested for obstetric injury but I wonder if since your child is probably over 1 year post injury at this point, and if the avulsion happened early enough, then his brain may not even have developed any representation of his arm in the womb? In that case you may be better off making his arm the way his brain "sees" it... not there?
Kate
Re: Intra uterine brachial plexus injury
I'm sorry I don't have much to say to help you, but wanted to offer support. While I agree with what Kate said in the first paragraph about finding experts, I was devastated by the second suggestion and am surprised no one else was. I don't know what I would have done if I'd read amputation from anyone, but someone who was an expert in the field and even then I would have expected it a little more gently approached.
Re: Intra uterine brachial plexus injury
The first time I heard about amputation was quite a shock as well. But I read about it from people who were considering it as a possibility. After the initial repulsion, I have to admit that it definitely seems like a viable option. Though my daughter is not a candidate, it would be a consideration if she were. Sometimes "experts" are the ones you least want to hear about possibilities from. Thank you Kate for your straightforward approach. I, for one, appreciate it.
Re: Intra uterine brachial plexus injury
While I feel a little disturbed about some replies to this post, and I am not looking to start a war, I would think that amputation would be a dire last resort option/suggestion, especially in this day and age of technology and constant scientific breakthroughs!
I know that had I followed the first specialist we saw, my son probably would not have the incredible gains he has today. The doctor said, well, I don't suggest therapy because it won't do him any good. That answer was not good enough for me.
The first surgeon we saw wanted to "go in and clean up the affected area", again, something went off in my "mother's intuition" and we went for 2nd and 3rd and 4th opinions until we were satisfied we exhausted all possible avenues. My son avoided primary nerve surgery by about a week.
While I am not in the medical field, I can offer you this advice - Research, ask questions, get advice! There is so much information out there, you just have to find it. I would give Dr. Belzberg at Johns Hopkins a call. Did you know he did the first successful nerve transplant? I'm not saying he'd be able to "cure" your son, but it's a start.
If you'd like to pm me I'd be happy to talk to you.
If something doesn't sit well with you, then keep searching until you find in your heart of hearts that you have done all you can, and you have made the best decision armed with every piece of information you can get.
Believe me, it is not an easy thing to do.
Adrienne
I know that had I followed the first specialist we saw, my son probably would not have the incredible gains he has today. The doctor said, well, I don't suggest therapy because it won't do him any good. That answer was not good enough for me.
The first surgeon we saw wanted to "go in and clean up the affected area", again, something went off in my "mother's intuition" and we went for 2nd and 3rd and 4th opinions until we were satisfied we exhausted all possible avenues. My son avoided primary nerve surgery by about a week.
While I am not in the medical field, I can offer you this advice - Research, ask questions, get advice! There is so much information out there, you just have to find it. I would give Dr. Belzberg at Johns Hopkins a call. Did you know he did the first successful nerve transplant? I'm not saying he'd be able to "cure" your son, but it's a start.
If you'd like to pm me I'd be happy to talk to you.
If something doesn't sit well with you, then keep searching until you find in your heart of hearts that you have done all you can, and you have made the best decision armed with every piece of information you can get.
Believe me, it is not an easy thing to do.
Adrienne