United Brachial Plexus Network, Inc.

Thank God we live near Cincinnati Children's Hospital, who has one of the only brachial plexus centers in the U.S. My daughter was born in January and had a traumatic birth. She has shoulder dystocia, or Erb's Palsy, more specifically. We started going to the brachial plexus clinics when she was a month old, and the neurosurgeons explained that 64% of babies have spontaneous recovery. She is 14 weeks old now and is, unfortunately, in the 36%. She had the EMG yesterday. At her clinic they informed us that surgery is necessary and they would like to do it soon. So, here I am, a mother in complete shock and terror afraid for my little girl. They tell me that even with nerve surgery, she will not have 100% function/range of movement at the end of the road. Being a middle school teacher, this news is a tough pill to swallow. I see how mean kids are at this age and seeing how some kids prey on anyone who is different. The center here at Cinci has paired me with another mother traveling the same path as me, but it would be nice to hear from others that have also "been there, done that."

My son is 13 and has ROBPI. He has had 8 surgeries on his arm. We did as many of his surgeries as we could while he was still young, to try to avoid the troubles with other kids as he got older. His lastest surgery was 2 years ago and while he was out of school, his science teacher did a very nice power point presentation about his injury for the other children to try to help them understand before he came back. He has had some negative things said to him, but all in all, not too bad. Kids basically just don't understand. He catches and throws a baseball with his unaffected arm, so one boy used to yell at him(who was on his team) to quit throwing his mitt off. One girl made a nasty comment to him a couple of years ago. He has always gone to the same school, so everyone knows that his arm is different. He has a great attitude about it and doesn't let it get him down too bad. I just explain to him when he is down that God made us all different in our own way and his is more obvious than others, but other children have their own problems,too.

Hearing that your baby needs surgery is the hardest thing, I know...but now that I look back, I wonder what kind of life would he lead if we hadn't taken that chance. I am glad that we did....wishing you the best of luck with your decision and know that a lot of us on this board have been there and are here if you need to share and vent...

Crystal

Thank you so much for sharing your story. I am very excited to join this group of great parents. My new mentor/friend that I have been introduced to as my support person is amazing and so supportive. I can just imagine the magnitude of the rest of the BPI moms and dads! I am hoping some of your strength rubs off on me. Lord knows I need it.

Hi Savannah's Mom,
This is your fellow CCHMC mama. I sent you those emails we talked about (the video has pictures of post-surgery in it among other things) so check your inbox or junkmail (if my address wasn't recognized).

I listened to "Praise You In The Storm" and you were right... a box of tissues beside me and well used. Wow... that song is powerful and amazing. I'm so glad you shared that with me and what a song to keep in mind. It's not an easy journey our bp kiddos and the whole family are on... full of ups and downs, trials and triumphs, sadness and hope.
Just know you are not alone! The BP Community is pretty amazing at listening, sharing experiences, ideas, and hope for each one of it's children. Talk to you soon. ((hugs))

Hi Savannah's Mom

I can't imagine how hard it must be on you to be on this road with obpi. I am OBPI have a global injury and most of my life thought is was mild.. My Mom started therapy for me at 2 weeks and I'm her 8th child. She lost three children to " traumatic birth"... I thought it was just a bad birth but as I began my path with UBPN, I realize that it was SD.

Being OBPI is not easy on either the parents or the child. We get frustrated, annoyed, tired of PT and being nagged to use our arm. Yet, there is never a time when I don't thank God for my Mother and her nagging, pushing and determination to get me to move. I was around 5 when she got my fingers moving. It was her drive that pushed me into feeling that I was was normal and just had to do some things differently.

I am a wife of 45 years, the mother of three and grandmother of 5 children. I have had a full life and have been blessed with having the same great friends since I was a teenager. Right now it's hard, for you, to even imagine how her life is altered by this injury. I won't lie and say it's easy but it did make me strong, determined and persistent. Hang on to your hat because bpi children are strong, determined, creative and oh so stubborn. my mother said I was so stubborn and often complained about how determined and stubborn I was as a teenager. It was all her fault... She told me very early in life that I was not allowed to say " I can't." She always said "can't means you won't" she also said I could do anything I set my mind to. She was right, I don't have a back or give up button. Most things, in life, I viewed as a challenge. I looked at many new crafts, sports etc and wondered IF I COULD... never did I wonder if I would like to do them only could I. That has served me well because I was not afraid to try new things. I learned many crafts etc.I might never have tried if I were not OBPI.

My family treated me as a normal child and did not make me feel disabled in any way.
My Mom gave me wings to fly, she always enabled me and never disabled me...
That is the greatest gift you will give your baby.

Sometimes we will fail but not everyone is good at everything.
I always told my kids better to try and fail then to fail to try.
I think I learned that from my Mom ... especially this weekend I think of her and how amazingly strong she was.
Bless you and the baby and remember to enjoy her. We are so much more than our arm...

Hello and welcome,

My baby boy is 7 months old now, he had his primary nerve graft surgery approx 6 weeks ago and is doing wonderfully. You wouldn't know there was anything wrong as far as his little personality is concerned, he is such a happy little man. The surgery was truly terrifying, for me at least, he handled it a whole lot better than I did.

I have the same fears as you, knowing how cruel children can be. Be sure to send her to a school that has zero tolerance on bullying. And as parents we will do our best to raise strong, healthy, independent children.

Remember to take care of yourself also

Siobhan
(Jacob's Mum)

Okay, just to let you know.... it is all going to be okay. Our kids, eventually just become kids. They make friends, they play sports, they learn musical instruments, they have sleepovers, they do what other kids do. IF, and this is a big IF... you let them be kids. Right now, the focus is on the arm. Eventually, you will get to a place where the function is what it is. And, in some ways, that is a relief.

Juliana is 11+ years old. She is just about to finish the 6th grade. She is an honors student. Has a pack of girl friends, the best kids ever! She is a "beast" on the tennis court. She plays at least 3 times per week and is headed to tennis camp in Connecticut this summer for 4 weeks and then will resume playing with her coach and tennis friends here in South Carolina. No one makes fun of her arm (and she has a huge scar from her last surgery, 2 years ago). Her friends all know, but more important to them is her allergy to nuts and peanuts!! They are soooo careful for her!!!!

She has a 504 plan at school, but it is only in place to get an extra set of books and to make sure that things like keyboarding can be done "her way". She plays the trumpet in the band and is loving it! I think she will be changing instruments to a different brass, but who knows!

Yes, she is one of the kids who can be in pain. And she is, most of the time. But she rarely complains about it (she complained more about getting her braces on!!) unless it really hurts. She has been spending additional time serving at tennis and it has hurt more. She is using muscles that she doesn't ordinarily try to fire. But it is working, as her toss has improved so much in the last 2 weeks.

So, my advice is this: Go to playgrounds and play ALL the time (climbing is great therapy), go to a pool and swim (juliana was in a pool starting at 6 months old), try to find horseback riding therapy-it's great! Yes, traditional therapy is great, but there is so much more to life and the kids learn a lot from doing the "regular kid" stuff. Sign her up for sports, gymnastics, karate, t-ball, soccer...whatever! Figure out her passion and go there! Try everything. The more she is involved with and the more kids see her on their level, the less likely they are to bother her about her arm.

Also, cultivate a sense of humor. Someones son said, when asked about the scar on his arm, "i was bitten by a shark". Great answer! Kids don't want to hear the long story. Juliana now says that she abducted by aliens or was in a movie or tells some ridiculous long story that the kids lose interest in and they walk away. In the end, it's noone's business...and the people who need to know, do.

Enjoy her. Sing to her, read to her... they get big incredibly quickly. My oldest graduates from high school in 2 weeks. How did that happen??? I swear that just yesterday I was trying to figure out how to make it thru the day with 4 little kids...and in two very, very short years my twins will graduate. And then my Juliana... I don't worry about her any more. Not anymore than I worry about any of my kids. I know that she will go to college and study what ever she wants. And she will live her life. I know how hard it is at first... but I assure you, it all works out in the end.

claudia

Please be sure to come to the next UBPN Family CAMP in 2012; check out the pictures and all posts about Family UBPN Camp 2012. Together we stay strong and learn from one another...Parents,Adults with OBPI's and Professionals who attend. It is a Life-Changing experience for everyone who attends. I am Happy for you that you found us so early in your dear child's life!

Carolyn J
LOBPI/age 72+++++

My son is 6 and has had two surgeries. I just wanted to add a couple of things to the great things people have already said. As a they said, your child will end up being a "child." Right now you are in the trenches! Of course, this is all you can think about and it's hard to imagine a time that you won't look at your child and think about the arm. But, you will. Yes, you do sort of have to obsess about it now, the research and decisions are overwhelming at this point. My son's first year, I was on this website ALL THE TIME! It was such a great support and resource. But again, there will come a time that the injury isn't in every thought and you will be more focused on all the other kid stuff (ugh, homework!).

Next, as someone else said, let your kid be a kid and do all kinds of stuff, even beginning as an infant and on. It's hard if your child is injured, and especially if it's your first child, to not be overprotective. But, in retrospect, I wish I would have backed off a lot, and let my child explore more, try more things that seemed "dangerous" back then (uh, climbing a ladder at the park is pretty benign). I was under him, spotting him all the time. I think I made him too cautious. Now, my second child (no injury), I'm always thinking...oh, she'll be fine. Because now I'm more relaxed and know all kids need to just try stuff, fall, etc. I have a friend whose second child has a different type of injury, but we often comment that in this respect, it's better that it's her second child, because she is more relaxed and tolerates this child's falls easier and this child doesn't seem so cautious.

I've never been to camp, but have been to picnics with other BPI families. The first was when my son was 5 weeks old. This was so amazing for me, because I was able to see the bigger kids playing, running, being kids, so I knew we would get to that.

Well, I think I had something else to say too, but can't remember, but this is enough for now.