United Brachial Plexus Network, Inc.

Hi Penny

Hope your new grandchild is making some great improvement. I think you may want to check out injurednewborn.com and I was also thinking that your post really deserved its own attention. Usually when you add a post onto one that has a different topic you don't get as many responses, because many people just respond to the main topic, so I would really encourage you to post again. Gosh your story is so familiar, not being told by doctors and nurses about the injury and then when you are it is always minimized. You can understand their motivation (liability). Also, the literature (most of which is conveniently written by OB's say the majority sometimes as high as 95% get better, but that is simply not the truth. Actually the BPI specialists (which I strongly recommend your grandchild see, you can call TCH and they help soooo much over the phone and will start a file without even going there, for free, you can also send them a video but they will probably have you wait until about 3 mths. as long as the baby has good hand movements) Any ways, I got off track. I was trying to say that the Brachial Plexus Injury (BPI) specialists will tell you the truth is almost the opposite and that the far majority, as high as 90% do not have a FULL recovery. Be very aware and make sure the parents are too that this injury is serious and although movement can seem to return great, there are often long-term consequences, muscle imbalance, etc. that over the years can lead to serious problems. I have heard kids who had a full recovery only to learn around age 7 or so that there were some related issues. The other thing I REALLY want you to know is that doctors often minimize this injury and they often act like they know, we, along with many, many others have learned that they often don't. PLEASE consult with a specialist. Your precious little one deserves the best. Are the parents doing daily range of motion exercises? They are so important. Please keep posting and keep asking questions. UBPN is a life saver. Best wishes with your little angel. How lucky that baby is to have such an involved grandma. Elisa

P.S. If you don't consult with Texas Children's Hospital, and want other specialists that may be closer just let the message board know.

Hi Penny

Hope your new grandchild is making some great improvement. I think you may want to check out injurednewborn.com and I was also thinking that your post really deserved its own attention. Usually when you add a post onto one that has a different topic you don't get as many responses, because many people just respond to the main topic, so I would really encourage you to post again. Gosh your story is so familiar, not being told by doctors and nurses about the injury and then when you are it is always minimized. You can understand their motivation (liability). Also, the literature (most of which is conveniently written by OB's say the majority sometimes as high as 95% get better, but that is simply not the truth. Actually the BPI specialists (which I strongly recommend your grandchild see, you can call TCH and they help soooo much over the phone and will start a file without even going there, for free, you can also send them a video but they will probably have you wait until about 3 mths. as long as the baby has good hand movements) Any ways, I got off track. I was trying to say that the Brachial Plexus Injury (BPI) specialists will tell you the truth is almost the opposite and that the far majority, as high as 90% do not have a FULL recovery. Be very aware and make sure the parents are too that this injury is serious and although movement can seem to return great, there are often long-term consequences, muscle imbalance, etc. that over the years can lead to serious problems. I have heard kids who had a full recovery only to learn around age 7 or so that there were some related issues. The other thing I REALLY want you to know is that doctors often minimize this injury and they often act like they know, we, along with many, many others have learned that they often don't. PLEASE consult with a specialist. Your precious little one deserves the best. Are the parents doing daily range of motion exercises? They are so important. Please keep posting and keep asking questions. UBPN is a life saver. Best wishes with your little angel. How lucky that baby is to have such an involved grandma. Elisa

P.S. If you don't consult with Texas Children's Hospital, and want other specialists that may be closer just let the message board know.

Penny,
I tried to send you an e-mail and it came back. You can e-mail me directly at

jeanmhei@aol.com

Jean

I would get her checked fast. That seems to be the problem with all of our babies. The BPI is not diagnosed early enough. They told me my little girl would be just fine and she isn't. Her doctor didn't even tell me about the mod quad, I found out about it online and when I mention it to doctors or therapist, they are clueless as to what it is.
Jana

My son Bradley, now 7 weeks old was 6lbs 14oz, no fetal ditress has a right brachial plexus injury. He is undergoing pt 1x week. We are still waiting to see improvment. We are going to the neurologist next month hopefully to find out the extent of his injury. This is a frustrating waiting game for us. I am trying to get as much info as I can about this injury.
Confused in Allentown,Pa.,
Allison

My first baby was 6 lb. 9-1/2 oz. 2nd was 7 lb. 9 oz and ROBPI (w/ shoulder dystocia). I was confused when I read everything about hi birth wgt b/c that was not the case w/ her; the OB did say she had wide shoulders and that extra pound made a big difference. I have read that the size and shape of your pelvis also contributes to shld dystocia.

My first 6lb 14oz Gestational diabetes 24 hours labor
My second 7 lb 12 oz " " 10 hrs labor
My third 9lb 10 oz Gestational diabetes ,pregnancy induced hypertension, was induced 3 weeks early 20hrs in labor lobpi C5,6 large neroma c-7 rupture also had some torn muscles........

My first son was 4lbs 2oz, a 32 weeker and had difficulty having him (they had to use forceps, should have known then)
Second son was 8lbs 13oz 11 days early used vacuum and extreme force. Has had mod quad and tons of therapy.