United Brachial Plexus Network, Inc.

I have a daughter who was born with this shoulder issue and she is now 3ks old she moves her fingers and wrist a bit but that is about it and it worries me to see her arm so limp. I find myself spending most of the time touching and stroking and just watching that arm for fear it wont ever move right. Any information or timeline of this injury would be appreciated.

Thanks
l_ibar@yahoo.com

I am so sorry to hear of your daughter's injury. UPBN has been a great source of information for us. I think one of the most important "tools" for us in helping our daughter return some of her function was performing daily ROM (range of motion) exercises with her unjured arm. It's great that you are touching her arm (for sensory stimulation). As for a timeline-enjoy your newborn. Start getting some information on who to see and where. It seems that most bpi specialists wait until the 3 month mark to consider surgicial intervention since she is already showing signs of moving her fingers and wrist. But, do get intouch with an occupational therapist as soon as possible. Preferably someone who has experience with Erb's palsy/brachial plexus injuries. Best wishes!
Shannon

Hi, I'm Cindy mom to Melanie and Matthew. I have a family website you can feel free to visit that will show you the differences in my kids injuries.

www.franklinfamilybpi.com

Hello. Let me first say that I am very sorry to hear of your child's tragic injury and for your own personal loss of a happy delivery. It's always so heartbreaking to hear of these preventable injuries.

My suggestion to you is to learn ROM (Range Of Motion) exercises taught to you by a trained PT (physical therapist) or OT (occupational therapist) to be doing at home with your child throughout the day. This is of utmost importance to keep the joints and muscles limber so contractures do not set in.

Secondly, get in touch with a BPI (Brachial Plexus Injury) doctor. You will find that there are favorites among this forum and let's just say, not so favorites. You must decide for yourself who you wish to bring your child to. Many factors will influence this, from location, experience, knowledge, first impressions, cost, and suggestions from other parents. Here are a name of a few doctors that I am aware of. My daughter, Amber, has not seen all of these doctors, but I feel it is important to offer you all the names that I have come across.

1. Dr. Scott Kozin, Shriner's Hospital, Philadelhia, PA (Main Hospital: 1-800-281-4050, Nurse for Dr. Kozin is Linda Filipone, Dr. Kozin (215)430-4034 E-mail: skozin@shrinenet.org

2. Dr. Peter Waters, Children's Hospital, Boston, MA, (617)355-6021 (Nurse is Paula Donahue), E-mail: Peter.Waters@Childrens.harvard.edu

3. Dr. Shenaq, Texas Children's Hospital, www.texaschildrenshospital.org

4. Dr. Nath, www.drnathbrachialplexus.com

Thirdly, come to this forum often and ask as many questions as you'd like. We, as parents and also as patients (yes, some of us suffer from this injury as well), have numerous experiences to share with you if you'd like.

Fourthly, get educated. The more you learn, the more you may help your child with recovery. I know that if I had not pushed and educated myself more and more, my daughter's injury would be much more severe now that it is. She's made leaps and bounds with ROM, PT, OT, aquatics, and Dr. Scott Kozin who we see at Shriner's in Philadelphia.

My daughter, Amber, was born with ROBPI (right obstetrical brachial plexus injury) due to delivering on my back and my midwife panicking during shoulder dystocia instead of attempting an alternate birthing position. I wish I could play that day back over and over and do something different so this could have been prevented, but I can't. I didn't do anything wrong except put my trust in a provider who panicked at the wrong time and pulled on my daughter's head and injured her brachial plexus. Amber will be 2 in November. Feel free to contact me if you'd like, as I talk with many people about BPI, not only for their benefit, but for my own.

Good luck.

Tanya in NY

Where do you live? There may be a support group near you that can also send you some information. I am the director of the Southern California group. If you can not find one near you I would be happy to send you a packet. Feel free to email me.

Dear New Mommy:
Welcome to the boards. We all know how you feel. Here you will find people who are going thru the emotions you now feel and people who have been there, but will never forget the feeling. We won't just tell you "it will be alright", we will tell you why it will be alright and more importantly, what you can do to play an active roll in making things better.

Tanya has given you excellent advice. All of the doctors mentioned will take a video if you are far away and all will help you learn more about this injury.

You didn't say where you are, but there is also a center in Cincinnati.

There are some things that you can do now. If you haven't contacted your local Early Intervention Services (or Birth to Three Program), you should do so. They will give you occupational therapy or physical therapy at no cost. They will evaluate your child and give you the services.

If you go to the information part of this site, it will give you basic information about brachial plexus injuries.

Keep touching the arm, range a couple times a day, keep the arm from flopping and enjoy the baby.

Ask any and all questions.

claudia
claudia@ubpn

I am so sorry and I know the feelings you are going thru. My daugher is now 12 years old, but I remember watching her sleep and hoping I'd see some movement in her arm. I put those little arm rattles on her wrist - hoping that would help - I tickeled her arm non stop - put toys in her fingers - watched her sleep for hours thinking that maybe during her sleep she'd move that arm and then I'd have hope. I tried tummy time, back time, bouncer time, - doggie and kitty time... (lots of pets in our family) and finally the movements did gradually come back. Very gradually.... You are at a very scary spot right now - but hope is there. I think my daughter was about 11 wks old when she first moved her arm alittle - my husband was holding her in his chair... we were so excited- I have pictures of that day. Today she is a 7th grader, and very active in all sorts of stuff - - but I wanted you to know that I understand your fears and also tell you that things will be OK - people will help you to do what is best for daughter. Your pediatrician should give you a referral to who you need to see next to help your baby. Please snuggle that little one right now - before you know it your daughter will be 12 years old like mine is - life keeps getting busiier - but of course I still snuggle the kid. Everyting will be OK. It really will.
Christy

hello there,

I know how you feel (my daughter is 5 months old now). She only had fingers/wrist after her birth injury also.
To give you some hope, my daughter started flexing her shoulder (bringing her arm straight up while laying on her back) around 2 months... and it was out of the blue. Prior to that we had no idea if she'd ever move it. It was amazing. She also started abducting (bringing it out to the side). She has triceps now, and her wrist is much better but no biceps. We may need primary surgery but because of the biceps, but I've heard many tell stories here how their baby's got it all back. So keep your head up!

Also, I highly recommend asking for a referal for a neurologist, orthopaedic specialist for BPI and rehab. The sooner your start the better. You want to do range of motion often to prevent contractures (tightness in the muscles that are not moving). If no one has shown you this yet, there may be info on this website on how to do it. If not, email me and I'll send you directions (I'm a Licensed Physical Therapy Assistant). Good luck and God Bless.

This is my first day on this site and already I've learned so much and feel better - well, I get mixed emotions because it's good to learn more, but it all makes me so sad too.

Our baby is 3 months old and I felt (and still feel) exactly the same as you. I think it is important to know the timeline of movement, and we were lucky that someone had told us we probably wouldn't see any big movement until about 2 and a half months. (our baby was able to move fingers and wrist at birth or soon after). Those weeks (up until 2 months) sort of felt like a relief, because I didn't worry then. And, amazingly, at 11 weeks, he suddenly was able to hold up his shoulder a bit. I noticed that it wasn't "flopping" any more...it's really amazing to see that and have some hope.

So, relax and enjoy your baby right now (I know there are enough other things to worry about and figure out with a newborn!), but do try to educate yourself as much as possible. We do ROM twice daily, and were able to meet Dr. Nath when he was in California (when the baby was 5 weeks). We've sent him a video and I've emailed questions and he is absolutely amazing about replying within a day or so! He has a very helpful website at http://www.drnathbrachialplexus.com/

I still have so much to learn and figure out, and still need to deal with all the emotions. I'm sure we all wish we could live that delivery over. But again, I'm excited to go through all the message boards and even post my own question. Let's keep in touch...

Thanks to all who replied it has been a very hard time for me to process all this information along with the worries and then just the joy of having her as well. I work for the med school in Davis, Calif. so kindly enough a good friend and collegue of mine is a Resident Physician at the Department of Neurological Surgery and has provided tons of information and hope and I will be signing her to see specialist @ shriners hospital in Sacramento. Although I have not found nearby support groups so this site was a dream to find!! SO many have replied to me by email with stories and advice that was very comforting. THANKS AND BLESSINGS TO ALL.

I will probably have mor and more questions as we go throught this journey together!

Lina, & Victoria Gracie!!!