United Brachial Plexus Network, Inc.

Another newbie here, so please bear with me. My 20 month old daughter, Ella, was in a serious car accident in July. The worst injury was a broken neck at the C1-C2 vertebrae. We were blessed that she not only lived, but there did not appear to be any spinal cord injury. She is currently in a HALO, but she can walk and move everything but her upper left arm. She was diganosed with a BPI, probably C5-C6. They have only done a needle test(?) to see which muscles were working. The deltoid seems to be most affected (but the biceps may be as well). We take her to OT and PT 3 times a week. Her HALO won't come off for another month.

Can anyone give us advice on what we should do next? We have just started looking at this injury and noticed there seems to be time limits when it comes to surgeries. Who is the BEST doctor for BPI in children? Does the choice of doctor matter if it is from trauma or birth?

Hi Ella's daddy,

Welcome to the boards, sorry you daughter is injured. As far as the "best" doctor is concerend that will be up to you to determine for yourself. One "best" doctor to one family may not be the "best" to another. I would recommend looking through the medical resources directory,

http://ubpn.org/medicalresources/us-bpi.html

where many of the top BPI docs (docs recognized as being experts in BPI) have filled out a questionairre to give you an idea of their background. After that, you should call and/or email the physicians to get an idea about how they interact with you and your child. Then I would recommend seeing two minimum and as many as you can afford to see after that. Your "best" doctor will eventually find their way to the top through your interview process, and questions. And of course gut instinct seems to play a role in these matters.

I wish you luck in your search!

Richinma

p.s. my OBPI daughter sees Dr. Waters in Boston, MA

Welcome Ella's Daddy.

I would have to agree with what Rich said about looking at the medical resource directory and interviewing/seeing at least 2 different BPI specialists and maybe more if you can/feel the need. Each doctor may mesh with your family a little bit differently, and some may have more experience with traumatic injuries versus obstetrical injuries.

There is also a traumatic injuries forum on this board that I would also suggest you visit, as then you might find some other useful information from other traumatically injured families. Feel free to post on any forum, including this one though.

I am so sorry that your daughter was injured, but it is wonderful that she didn't have spinal cord injury. What a blessing that is. It is still terrible that she has this brachial plexus injury. I'm praying for more healing for her, and your family.

Feel free to ask any questions you have, as you will find sometimes that one answer may lead to many questions. We've all been through a journey and want to be supportive for one another, no matter what our experiences.

Welcome again.

Tanya in NY
Amber's Mom, ROBPI, almost 5 years old

Ella's Daddy, I too am so sorry to hear of your daughters injuries. But so thankful that she doesn't seem to have any spinal cord injuries.

Rich gave you the best advice in finding BPI drs. And, yes there does seem to be a difference in OBPI and TBPI(traumatic) drs. So, I would be sure to ask.

Our son was 18 when injured and we have taken him to Mayo in MN. They have a wonderful team there for TBPI. I do know there are others out there though. This just seemed to be the best for us. I think shriners in Philly has a good BP dr. Don't know where you are located so that may make a difference to your choice but most of us travel to get the best care.

Nerve grafting seems to be the biggest one where "time is of the essence". This surgery is best preformed within a 6 mo post accident period. Not to say that your daughter will need it. With us they said that muscle transfers can be done at any time.

OT and PT are very good. When she is able water is a great therapy for this injury also. Sounds like you are doing the right things. Glad you found us early and hopefully we can make your path a little clearer with our experiences and knowledge. This is a wonderful place to vent, talk, receive support, ect. We have all been there.
Sue

Oh my goodness!! I am so sorry to hear about you daughters accident!..I too was in a car accident three years ago ,I fractured my C2...I also was spared any spinal cord injury which is amazing!...my daughter Cassidy has an obstetrical brachial plexus injury to her C5,C6 and C7....Your right the bicep and deltoid are the major muscles affected.As far as time sensitivity....I totally agree these injuries are. My daughter had the nerve graph surgery...to repair the torn and avulsed nerves (avulsed is pulled from the socket)I am in Canada so I can't offer advice on docotrs but the other parents here have great advice on that....I wish you and you daughter all the very besy with treatment and also her recovery from the fractures....
Dawn
mommy to Cassidy 17 months ROBPI

Thank you everyone for your kind words and helpful information! Our OT's recommended the Children's Hospital in St. Louis, a couple hours away from us. I was thinking Mayo would be a good choice too, but I wasn't sure how good they were with children.

We'll definitely be following the boards here to get as much info as we can.

Aaron, Jennifer, and Ella

I just wanted to post a recent article written about my daughter to hopefully provide inspiration to anyone suffering from BPI or families that are affected by BPI. We call her our miracle, as we believe she is only with us because of prayer and faith. We continue to pray that God will help heal her BPI and all of yours as well!

http://pantagraph.com/articles/2007/09/ ... 075875.txt

Welcome!
I noticed that you are in Central IL! So are we! I think you are farther West than we are but still close.

I would encourage you to consider getting several opinions for your daughter! I felt getting lots of opinions at first was very vital!

If you all would ever like to me in person feel free to contact me personally.

Blessings,
Kristie

Ella's story is truly inspirational, thanks for sharing it with us.

I pray she continues to heal and make great progress.
You are blessed, that after an accident like this, she is doing so well and was spared.

Kath robpi/adult

Ella's daddy,

That is am amazing article. She is a little miracle for sure! I also have an Ella...good choice on the name!
I hope that everything goes well for you guys and Ella recovers 100%! Good luck and God bless.
~Krista~