United Brachial Plexus Network

Hello everyone. I am the mother of a bright, beautiful one year old girl. A little over a year ago I was in the hospital not knowing what was in my daughters future. She was health but hurt. She stayed in the NICU for two weeks, thank God it wasn't longer. She has a functioning right Brachial plexus (mild diagnosis). Over time she as gone from a limp arm to being able to lift, bend, pick things up, feed herself and wave. She is not able to grasp as well, turn her hand over or bend her arm upward.
I have started to think more about the effects on her appearance, activities and social interactions. We went to the neurologist for her yearly and he re-iterated that her arm is going to be smaller. I knew that but I didn't know it would be shorter than her other arm. So I started to look closer. She as made such good progress that I felt that she would overcome this defect but know I am wondering if there are methods to increase growth in her arm. She attends therapy twice a week and once a week she as a play counselor that give special instruction (provided by the state) I don't want to sound like a parent that is trying to change the inevitable but I don want to do all that I can to give her the best opportunities. I was also wondering how should I expect her arm to feel (tingly, painful, heavy?) Let me add that it is not noticeable when you don't know, we have even had past therapist ask what arm it is. I have read some other responses and you all have said that things have changed for you since you've gotten older, So my other question is... Should we expect her arm to become more burdensome than it is now or feel different. Can I expect the progress that we have made to be as good as it gets? I have so many more questions but I am going to wait for responses before I continue. Thank GOD for this site. I am so curious and worried about my daughter's future.

Hi Crystal,
If you are still concerned about your little girls recovery try seeing a bpi specialist instead of a regular neurologist.
Mostly, I wanted to tell you that you should never expect your daughters arm to be as good as it gets! Things can get better even with age. I turn 21 soon and I am still making progress! Never give up hope!

As for some of your other questions, I will try to answer again tomorrow when I am not so tired. I just wanted to get this first part out tonight.
Hugs,
Amy 20 years old ROBPI from MN

Welcome to the boards! You have come to a great place with people who have been there done that.

You are a great mother for realizing your daughter's needs and she will always be thankful later in her life for you helping her.

I too have an affected arm (LOBPI) that many people have never really noticed. Although it looks normal to most people my range of motion is not full, nor can I straighten it, turn it upward etc. With physical therapy, (I had a surgery) at the age of 31 I now have more movements although still with pain.

Amy's message is so true. People can always gain more and at any age.

Keep up the great work and stay strong. Your persistence will pay off and your daughter will be so very thankful in the long run.

I am 38 years old now and have been living with this injury all my life. My First advice is beleive in the impossible. The Doctors told my Parents I would never be able to move my Arm after it was first injured. 38 years latter I have regained almost 80 percent movement back. I Just recently underwent a shoulder replacement surgery and the prospects are looking even better. Stay positive, any outcome to any situation in life is greatly effected by the attitude you have. I firmly believe This. Teach this to your daughter that she has an opportunity not a handi cap. There is a lot of hard work ahead for her but you can tremendously help her by teaching and showing this type of mindset. Never Give up! Keep working. The mind is a wonderful Tool. As for her appearance only time will tell but after 38 years my arm is only slightly smaller then the other and looks fairly normal. Hope this helps

Your daughter's situation sounds very similar to mine. Most people don't notice my injury unless I tell them about it - (or if they attend a yoga class with me!) I think one of my arm's is definitely a little bit shorter than the other, but I'm the only one who knows that. My own mother didn't even realize it until I told her that holding both hands on the steering wheel is mildly uncomfortable. (I have ridiculously long legs, so I like to move the seat back.. But then I can't reach the wheel very well with my injured arm.)
My injured arm is actually slightly larger, muscle wise. I think it's because the few muscles I can use get a lot of work!
Anyway... what I'm trying to get at is that the physical appearance of the arm isn't the main concern. Nobody else really notices. The main problem is its function and how it will look when she's using it. I highly recommend working with a BPI specialist and continuing physical therapy to continue to help her increase her functioning.
Her arm probably will improve some over time. I think my arm was completely paralyzed for the first six months of my life. I still can't supinate or raise my arm above my head... but I have never had surgery, done physical therapy, or seen a BPI specialist. Most doctors told my mother I would never be able to use my arm. I don't think it's possible to predict the exact outcomes. They also continue to find new surgeries and therapies that are very effective.


Message was edited by: MaureenK

Hello, my name is Valarie. I understand what you are going through. I have a brachial plexus injury, similar to your daughters. I have had this disability all my life and I understand the "challenges" that come up in everyday living. My advice to you is to go and see a BPI specialist, if you email me at vchampionsablatura@islander.tamucc.edu, I can give you the contact information of the person I see. I can also give you some tips for your child.

Hi, I am in the same situation as you. I a one year old (almost 2 years old) with a ROBPI. Anyone who doesn't know that she has this injury can tell a difference. Even therapists or doctors have to look twice to figure it out but it's been almost 2 years going to therapy, seeing a few doctors and I'm still concerned. I am finally being sent to a ped. bpi specialist and also recently was recommended to have the muscle surgery done on my daughter. I kept thinking what else can I do, kept researching to see what else I can do for her. She is now on an E-Stim regular schedule, bought her a brace for supination (she can't put her palm up). Don't ever give up but also live a normal life. I have spent a lot of time thinking about what else to do and just get stressed. Live one step at a time, Progress will come.

hello! i have the exact same injury since birth in my right arm. i also have shortening of the arm . i am 25 now. my family often forgets about it because i function totally normally. i can do anything anyone else can do just in a different way. your daughter will be fine but will have the occasional cry fit when she feels she is different. i still sometimes have these and i'm sure i'm not the only one. everything will work out and she will learn to live normally and accept her disability. warmest wishes to both of you1

sabrina