United Brachial Plexus Network, Inc.

Hi Jamie, Yes, I would like some information on your doctor in Boston. My daughter Jaime did not need surgery per our Orthopedic doctor. But then again what does he know. I have had some bad experiences with the medical community. My OB had so much malpractice in his background. I had no idea. He delivered my son and I had no problem. My daughter weighed about 9 pounds he did not do a ultrasound. He was known for his usage of the instrument that looks like the plunger. He wants to get in and out. I believe his aggressive behaviour caused my daughter, Jaime's injury. I would like to look into a specialist. I am starting to have some doubts. I would like a second opinion. Please let me know about Boston. Are there any in New Jersey? Or Philadelphia? Talk to you soon.

Hi and welcome to the board. I have two children that were injured during birth. My first child Melanie recovered at six weeks and is now almost 2 1/2 years old with no noticable problems. My son is almost 10 months old and had primary surgery in October. His injury was much more severe. Children's Hospital of Philadelphia now has a brachial plexus clinic. We have found the care we received there to be excellent for both of our children.
Cindy

dear suzanne
Perhaps it is good you are only hearing about surgery now- so that your daughter has had the chance to obtain recovery that she has without surgery!
Your daughter seems to have recovered very well and many children are referred by the surgeons for surgery and not given the chance to see if they would have recovered that much without it because the medical approach says it is risky to wait- perhaps that is usually true -who knows? it isnt true all the time, I assure you.
Please understand-that BPI "specialists" are surgeons- If you take your child to a BPI specialist you will be considering whether or not surgery can help fix a specific problem(BPI) for your child- and you might want to look at that- that you wish to identify her BPI as an issue large enough in her life impacting her health and welfare so much that she needs surgery- Many people here at UBPN are in that predicament and my heart and blessings go out to them-
welcome to the board- there are GREAT people here! blessings on your path, mary

Cindy - can you give me more information about the clinic at CHOP.... do you know his background? where did he train? does he do surgery? primary? secondary? what's his experience level? his philosophy?
thanks,
francine

Hi,
Suzanne, I mostly just lurk here, slow puter and limited time keep me from posting more often. I wanted to say first I know Francine has given you lots of good information and I don't have near as much knowledge as she does. I know it was her that has helped educate most of us, including myself. I know it can get very overwhelming when you first start finding out all the info that is out there. My best advice is to take it slowly if you try to wade through everything in 2 hrs time you'll blow a fuse and probably end up more confused than anything. And please do not feel stupid or bad for not knowing all this automatically. We've all had to learn the things we know. Unfortunately IRL the docs and therapists are not as educated on this injury as they should be. It is an unfortunate circumstance I think mostly due to the rarity of the injury, and partly due to the nature of it. (ie many are caused by dr negligence) I did not learn much past what Atticus ped and OT told me until Atticus was about 12 months old. I also felt overwhelmed and and felt like I had not done all I could have to help my ds earlier on. But I did do the best I could with the information I had available to me at the time. And in retrospect I can't think of much that I would have done differently, or that would have drastically altered where we are now in the long run, in our particular situation. I also wanted to add that even tough seeking out an evalutaion from a BPI specialist is an excelent idea in any BPI case there are other options that may be useful to your dds situation. For instance chiropratic care, massage therapy, accupuncture, and other alternative methods. While I don't say you should run out tomorrow and make an appointment with an accupuncturist. I do suggest that it may be a good idea to keep these in mind while researching for your dds care. Welcome and good luck in your efforts. Pam

Hi Cindy, I'm glad to hear of your daughters early recovery. Now that she is much older can you tell that she had been injured? The doctor told me that Jaime had regained about 90% usage. When I look at her it is hard to tell that she had a injury to her right arm. Both arms seems to move the same way. But it is hard to tell when they are young. You cant ask them to perform tasks so you can see if their arm is working properly. I may have a interest in calling your doctor in Philadelphia. Can you give the name of your doctor? Also ditto on all the questions Francine asked? I have had bad luck with doctors. I think I need to switch to a new doctor. I am starting to lose confidence in the one that I am going to. Please let me know. Thank you.

Hi Suzann...welcome to the board. I'm sorry your daughter was injured but you will receive a wealth of information here. And it looks like you already have!

I have an almost 7 year old son, Mitchell who has a ROBPI. He's had one surgery in Minneapolis, MN at the Shriners Hospital for Children and has had very nice results. He has, however, developed mild scoliosis due to his injury and will need another surgery in the next couple of years to help with external rotation.

The best peice of advise I can offer you is to go to a BPI SPECIALIST and go NOW. We messed around with ortho specialists and other specialists (because we didn't KNOW about what was 'out there' as far as help for this injury) and we missed out on a lot of treatment for Mitchell. The doctors here lied to us and mislead us. Others learn from mistakes already made, so please go as soon as you can.

Good luck to you and your family!

Missy

Hi Missy, I am really starting to get overwhelmed. I am going to look into the BPI specialist. I think I should have a second opinion. Right now I am having problems. The last time my daughter saw her Orthopedic doctor was June of 2000. She was supposed to continue with Occupational therapy for some reason I am having trouble getting in touch with the therapist. I have called several times and recieve no reply. I have called the Doctor several times and I am getting a run around. Its not like they havent been paid. We dont owe them a dime. But I dont know why I am getting this treatment. I am going to do what I have to do. Jaime is doing quite well maybe they think she is cured. I dont know but I will feel better to have her looked at from time to time. It is very frustrating to be lied to by doctors the people you are supposed to trust with your families well being. Sometimes I wonder if they really know what they are doing. Sorry for the venting I get very frustrated when I dont get a straight answer. Thank you for your support. I will definetly look into it. Talk to you later. Sue

Hi Pam, Your right I cant believe the abundance of information out there. I feel like I am reliving the whole event all over again. But this time with more clarity. The doctor I am seeing seems to be knowlegeable, but he is not a BPI specialist. He acts like Jaime will be fine. He said her only problem may be that she cannot hold her arm completely straight up. She should be able to do just about everything else. I dont know should I feel better about that. What kills me the most is that it could have been prevented. I wish I could have done more research on the OB that I was using. He had alot of malpractice in his background. I am glad that I did seek help for her right away. If I would have listened to my baby's doctor, I may have never seeked help. I should be glad that it was not as bad as it could have been. But it still upsets me to hear that so many of the people out there have to go through this in the first place. I have been educating myself and going to slow down. I am getting myself all worked up. Thank you for your support look forward to talking to you again. Suzann

Hi. Welcome to the boards.
I have never heard of a child being injured in the womb by herself. Being in the womb protects the infant from getting hurt. I would not know how a child could cause the injury, when they are in the amion fluid in the sac? See if you can get your child to a brachial plexus specialist. I would really question what your doctor had told you about this injury. My child was injured during the birthing process, and all my doctor would say, is that it is unfortunate! My child does suffer from pain, because of this injury. Most of these injuries are caused by malpractice of the doctor. They can be prevented.
You could also check with your lawyer. This is just my own opinion. Don't give up finding info, and hope. These boards are great to help us with getting info.
Welcome aboard.