United Brachial Plexus Network, Inc.

Hello to all:

My name is Alicia and my daughter Mackenzie was born on 6/20 of this year with BPI to her left arm. When she was born the cord was around her throat and she was not breathing. The drs had to yank her out to save her. At the hospital they told me she had erb's palsy and basically led me to believe that it wasn't that big of a deal. Since then we have seen doctors and she has been to physical therapy, her therapist recommended this site. I have read through the numerous message board posts and now I am throughly confused and upset. I appreciate the good information and all but feel so lost. All these surgeries, terms and abreviations just send my head spinning. I geuss I didn't realize how bad this injury really was. I don't even know how her injury compares to other children' injuries (severe, moderate etc.) She can move her sholder, wrist and fingers. She cannot mover her elbow and we just had to order a brace for her wrist. Has anyone ever just needed physical therapy or has everyone had surgeries of some sort? Has anyone ever felt so lost as I do? I keep telling my self that things could be worse, but, she is my little girl and I just want her life to be a good one.

Sorry for the rambling and the slight self pitty, but, I just don't know where to start with this injury especially if she is going to need surgery.

Thanks for listening.

Hi,

My son was born on 8/14/03 with a ROBPI.

He is going to be one in a week.

He's doing well now, but will probably need some type of muscle surgery in the near future.
He was able to avoid primary surgery, which is done on the more severly injured babies.

Sounds as if your daughter is right where my son was at that age. He had wrist, hand and some shoulder movement.

I know all of this seems VERY OVERWHELMING right now, but I want you to know it is going to be OK. I know it probably does not seem that way right now, but it will be.

Have you seen any of the top specialists yet?

We have seen Dr. Kozin, Dr. Waters and Dr. Nath from Texas Children's Hospital.

I'm in Connecticut.

Please feel free to email me directly if you want to talk further at danielle.bacco@pharma.com.

Good Luck!

First of all, don't feel guilty that you're feeling sorry for yourself (and your daughter). Everyone's injury could be worse - and everyone's injury could be better!

Read, read, read. Learn all you can. The more knowledge you have, the better. Francine (another mom) has told me many times that we are our children's best advocates.

Search around here, look around at injurednewborn.com and read from Maia's site (linked from injured newborn). Look up words and get to know the terminology.

Not everyone here has experienced surgery. I haven't. My daughter could have benefitted - perhaps, but I've been turning in circles for 2 1/2 years too! We have been going to therapy but it's not done much for Avery because the therapists here aren't familiar with BPI.

Best of luck, all the strength to you for this long-haul. We're here for you!

Bonnie
(in Canada)

Hi!

I'm really sorry about what's happened to you. Unfortunately I have to say my case is very similar with the exception it's a boy. He was born in January and the same thing happened, the cord around his neck followed by a robpi. He also moved his hand, wrist and shoulder. I was told it was a very complicated thing by the pediatritian at the hospital and later was told by the ob and my pediatritian that it wasn't that bad and he would recuperate within a few months. Needless to say I found their opinion better and thought the ped at the hospital must have been crazy to have scared me like that.

Well I won't bore you with my story - it's too long and complicated, but YES I have definetely felt confused and lost at some times, sometimes my husband and I get upset because we don't share the same opinions (he is more optimistic and doesn't care about beeing too informed), so...

One thing I've learned is each case is different so don't rely on other people's experiences - get yourself the very best medical assistance, a specialist in the field of OBPI.

Another thing is doctors can only tell the extent of the injury once they operate. That's why there is a difference of opinion as to when to operate.

On the one hand, the sooner, the better, on the other, there is a chance to operate and do nothing because it would heal by itself with only therapy. We did surgery at the age of 3 months and 3 weeks and it needed repair. Sebastião had a nerve transfer from his leg and it would never heal by itself, no matter how much PT we would have done.

I have felt lost, I have felt very bad about it at times. Some of the things I read just scare me more, that's why my husband says I shouldn't come here.

Hi Alicia,

I'm so sorry to hear about your daughter. I can understand how overwhelmed you must be feeling. My daughter is 11 months old. She has a right obstetrical brachial plexus injury (ROBPI).

My advice would be to have your daughter seen by a BPI specialist. There are several throughout the country. I would be happy to share our experience with you privately. Feel free to email me at jmcash6896@msn.com

All the best,
Marcy

Welcome to the boards! You've come to the right place for information and support. I have been a member of the boards for....well, my son just turned 6, so I guess I've been a member for 6 years now. WOW!! Where did it all go? But anyway, I have found so much information from this site. I was able to get my son the right therapist by knowing what to ask. I was able to fight the insurance companies by knowing what to do. I was able to get my son the surgery he needed by knowing where to go and who to see....all of it was because of this site. I have met some truly wonderful people on this site and just don't know what I would have done without them. Feel free to ask anything. You'll usually get a wide variety of responses, but most of them all helpful. I just love this site! I even gave it too all of my son's teacher's so that they can be informed. Your right though, it can be overwhelming at times. If you can find someone you can correspond with on a regular basis, it definitley helps.

Good Luck.
Laura

Hi Mack's Mom,

I'm so sorry to hear about your child's injury.

It IS possible that your child's injury WILL be no big deal. Statistics vary widely, and no really good studies have been done, but many children do fully recover from this injury.

There are really only two ways to tell how exactly how bad the injury is... wait and see how much recovery the child gets on their own, or operate and take a look. Most doctors can make well-educated guesses, based on a particular child's pattern of recovery, how bad their injury is. http://brachialplexus.wustl.edu/ provides a good overview of the injury and the different surgical procedures.

Typically, the kids who make a full recovery without future problems have no remaining signs of the injury by 2 months old. Most doctors agree that if a child has full function by three months old, nerve surgery will not provide a better outcome. After that, it gets a little blurry, and there is research ongoing right now to try to answer these questions.

The next few weeks are probably going to be the most difficult time for you, as you get oriented to all the terms, etc, and as you watch and wait for your child to recover or not. Make sure you take care of yourself, and give yourself breaks from your investigations as they can be very stressful. Information overload is a real danger, and doesn't necessarily help.

I would make sure that you find out if the doctor your child is seeing knows about the full range of surgical techniques, just in case. It took us 2 months to discover that the specialist our child was seeing was incredibly and unforgiveably uninformed about surgical options, especially nerve surgery, if our child didn't recover.

How your child moves her shoulder, fingers and wrist, and how these movements progress with time, will help a doctor determine if she is likely to recover all or most function by herself, or if she will need surgical interference. From the movement you are describing, I think most doctors would watch and wait for awhile yet (she is less than 2 months old still) but it is important that it is an educated doctor doing the watching!

Nerve surgery is available in the event that your child will make a recovery by herself. It can take a very severe injury, with no hope of recovery, and give hope. The results of surgery depend on how much involvement and damage there was to start with - all the research shows that more severely injured kids don't get as much function back as less injured kids. Since your child has shoulder, wrist and finger movement, she is going to be better off, with or without nerve ("primary") surgery.

Keep in mind that nerve surgery can give hope where there wasn't any, and it can definitely improve the expected outcome for many kids, but it won't restore "normal". The nerves just don't grow back the way they were originally. If the nerves are minimally injured and mainly intact, natural regrowth is probably going to be best. The only way to tell is to for your doctor to watch the pattern of recovery.

Oops... I have to run - our physical therapist is here! More later

Kate

Hi, welcome, glad you found us...but sorry you had to. As with any trauma, it is a road of ups and downs.

It's easy to feel overwhelmed with all the information and opinions that fly around on these posts. One thing to keep in mind, yes everyone's situation is different...but, the people that tend to need the support of this board, and the information from this board, tended to need more "intervention" in terms of aggressive therapy, splints, even surgery.

Those who's children have had this injury resolve relatively quickly probably don't have the need to come here as frequently for information or emotional support, and probably don't tend to voice their experiences as frequently. Therefore, the boards at least might appear to be a little slanted towards discussions of more moderate to severe injuries. Not all injuries need the stuff that tends to get discussed here.

One of the great things about these posts though...is that few people, including Dr's. and therapists, know about the nuances and complexity of these injuries...not just with arm and shoulder movements, but with total body integration. And while, nothing may need to be done besides PT I think it is imperative that we all learn as much as we can from each other. Many adults who have lived with this injury are just realizing now, because of these posts, that some things they thought were just "quirky" are things that could be BPI related, such as feeling colder on their BPI arm, getting sunburns quicker on their BPI side, etc.

Sadly for most of us that post...we've learned the hard way that the "it's not that bad, it will resolve by itself line" applies to someone else's child and not ours. If it had resolved, we probably wouldn't be posting here.

Another thing...this website does have a glossary of terms, which is pretty comprehensive. My child is 4 and I STILL have to refer back to it when all the terms start flying. It's confusing to all of us at times!!!

Hi, Alicia:

I am so sorry to hear about your precious daughter. Erb's is a difficult thing to deal with, especially since we're virtually all ignorant of it until it happens to our child. We all understand how you feel, and my heart really goes out to you.

No, surgery is not needed for every child, but it's VERY important to have a BPI specialist look at your child as soon as possible for an evaluation. I don't know where you live, but I'd highly recommend taking a look at www.drnathbrachialplexus.com. Dr. Rahul Nath is an outstanding BPI specialist in Houston, and many on these boards go to him. You might want to take a look at his site, as it has a lot of helpful information on brachial plexus injuries. There are also some other BPI specialists on the East Coast, if that's closer to where you live.

My son is 3 and had some movement like yours as a baby, but he ended up very desperately needing surgery in the long run, so you never can tell. If your son doesn't need surgery, it will give you great peace of mind to rule out the need for it!

Please feel free to e-mail me if you just want to talk or ask question at all. I'd be more than happy to talk to you.

Take care,
Janet

Hi Alicia
I am sorry you had to find us because your son is injured. I am an adult/OBPI and we do make it.
Here at UBPN website we have a Medical Resource Directory http://ubpn.org/medicalresources/
We have a large directory and the doctors have filled out questionaire and it will give you some idea about their practice and location.

We have Awareness Material on the website that will help you to begin to understand all the terms.

Please send your name and address to Nancy@ubpn.org and she will send you our publication Outreach.
Ask for some back issues they are very informative.

I am sorry my e-mail is not on my log in.
If you have any questions please contact me at
KathM@ubpn.org

Kath

Kathleen M Mallozzi
Member UBPN Board of Directors