United Brachial Plexus Network, Inc.

Hi, everyone. First, I'd liketo to say how nice it is to come to a place where everyone knows what I am going through. It's so hard for others to really understand how difficult it can be to see my son not using his arm that he was able to use inutero. I have so many questions and so much that I would like to talk about. However, I'll try to keep it short. But, please forgive me if I get emotional. Like many mothers and fathers, my husband and I are not sure what we should do regarding suing my doctor. Like one of the other moms, I adore my doctor and have such a good relationship with him, but looking back at how my pregnancy went, there seem to have been red flags that should have resulted in a C-section, i.e., rapid weight gain towards end of pregnancy, high blood pressure, prolonged labor, head not coming down, fever, EXTREME thirst for last couple of months of pregnancy. We do have lawyers looking at the video (we were able to tape the delivery) and looking over the hospital records. I have my 6 week checkup in a couple of weeks and I don't know if I should cancel and find another doctor or continue seeing him or what. On one hand it seems so obvious but on the other I have no idea what to do. Please, can someone help. Also, my son's injury is to his right arm and it is his right eye that doesn't open up all the way. It's getting better but it still isn't where it should be. I've read the definition for Horner's syndrome but there doesn't seem to be much info on it. The doctors almost disregarded that there was even a problem to his eye and no one seemed to know about the syndrome. Has anyone else experienced this or have any other info? I apologize for this being so long but it's my first time here and I really need to talk to people who understand. Thank you advance for any and all help. I love my son so much and want the best for him. Your experience and support will help him get that.
Thanks, Sarah (Josiah's mom)

Hi Sarah,

First of all let me express how sorry I am that your sweet little Josiah was injured. I am truly sorry that I am here welcoming you to this site. But I am glad you found us here so early on. This is good.

There is a page on here that is important information for you - it is called Information for New Parents and if you just go to the home page you will see the link to it there on the right side. This is an important page to read because it explains the timeframes for recovery. http://ubpn.org/awareness/A2002newparents.html

It is important for you to know that if your son's hand has no movement whatsoever that you need to speak with a brachial plexus specialist immediately. Of course you should speak with one very soon anyway - but it is imperative to get immediate attention if his hand is without function.

There is a list of brachial plexus specialists here online - from the home page click on the Medical Resources list - middle left side. Or if you tell us where you live (state) there might be someone here from your state and we can let you know who is in the area.

It is important for you to be doing ROM - range of motion exercises on your son's arm as often as you can daily to keep his joints supple while it heals. If you are not already going to a PT or an OT, now is the time to get a referral to one - hopefully someone who understands BPI (or someone willing to learn about bpi). One of the things that is done early on is splinting of the wrist to get it into a neutral position is there is a waiter's tip posture (hand is cocked backward with the fist kind of closed).

By age four months what they look for is hand to mouth movement while the baby is sitting up (without the assistance of gravity). This is how they know that biceps are working. And usually this can avoid going to the O.R. but the hand movement or lack of is also another factor.

Horner's syndrome looks like the one eye droopy/closed and it does mean that there is involvement of the lower roots. In time this may look/get better as the child ages. My daughter Maia's eye looked really bad when she was an infant and as she aged it did look so much more open - it only gets droopy now when she is tired. It also means that there will be no sweating on that side of the face ... so there are precautions concerning this as the child gets older.

There's so much to learn and you can't do it overnight. One layer at a time - as much as your emotions will allow you to take it. http://ubpn.org/awareness - look in the resources section and there's a lot of stuff there for you to read about to last a little while. And you'll reread and reread it as the years go by....my daughter is almost five years old and there's still so much to learn.

About seeing your doctor at the 6 weeks checkup. This is such a personal decision to make and you are going to have to trust yourself on this. Since you are already planning in the legal sense of things, going back might not be a good thing to do....emotionally, physically or pertaining to your case. Talk it over with your husband and attorney.

Also - there are bpi picnics and gatherings all over the states.... there is one in NY coming up this weekend. Since I don't know where you live - here's the link to it in case you are nearby http://www.injurednewborn.com/tristatemuseum1.html. This is a good chance to see a brachial plexus specialist for an early evaluation.

Keep in touch and ask a lot of questions - we don't keep track of how many questions you ask!! LOL LOL

Kissies to your little guy,
francine
mom to Maia - age 4 1/2 years old - left obpi

http://www.injurednewborn.com
http://www.injurednewborn.com/maia/homepage.html

Thank you so much, Francine. It made me cry just knowing that someone was responding to me. To know that there are other people listening. Being a new mom and only having had him for about a couple of weeks (he was in the NICU for the first three weeks) it's been tough getting out and readjusting to a new schedule. But, I wouldn't trade it for anything, I love him so much. As for where I live, I'm in Wisconsin close to Milwaukee. If anyone is around here or knows of where I can go to meet more people with bpi, that would be great. He sees a PT once a week, will see the neurologist in about three weeks and the opthamologist in about three weeks. I never thought that having a newborn would entail so much. It's very disheartening to read so much about this injury and think about how little our doctors told/are telling us. No one sat down with us to describe the nerves and what might have happened, the possibilities of recovery, no one has told us anything. The only thing was that he has from 0-100% chance of recovery. We've had to ask the questions but most of the time we don't even know what to ask. When my mother asked the doctor and nurse about his eye, they looked at her like she was crazy. Like I said before, I brought up Horner's syndrome with some of the doctors and no one knew what I was talking about. I am so grateful for this site and the many others like it. I am so grateful that everyone is willing to share their stories and time. I never thought I would be involved in something like this (who did?) but if I have to be, I'm glad there are people like yourself to offer support. Thank you thank you thank you.

am I doing this reply stuff correctly?

Francine, I guess my last reply didn't go through. It was really long and I don't remember everything I said. Basically, I wanted to say thank you and how grateful I am for there being a site such as this one. And how grateful I am for there being others out there like yourself that are willing to give of their time and support so that I don't feel so alone in all of this. I also wrote how amazed I was at how none of our doctors had really sat down and talked with us about what was going on. We didn't even understand what nerves were affected and what effect different nerves had on parts of the arm. Basically we were just told what to do. My husband and I don't even know what questions we should be asking because we don't really know what's going on. But, I've been learning so much! Trust me, there will definitely be questions now. Oh, do you have any that we should be asking? As for his arm, he sees a pt once a week, will see a neurologist and opthathamologist in a few weeks. We live in Wisconsin, close to Milwaukee, so if you know of any specialists out here or if anyone is close to where we live we would love some contact! Thanks again and if this is a duplicate of what I wrote earlier, I'm sorry. Trying to get used to how this all works. Thank you thank you and thank you.

Sarah - I believe there are other moms on here from Wisconsin.... go to the General Message board and write up a post with a title something like this... "Anyone from Wisconsin?" and they will come forward.

In the resource documents found in the awareness section on here (http://ubpn.org/awareness) you will learn what nerves power what part of the arm. The reason you have to move fast if the hand is not working is because the hand is farthest away down the plexus... the nerves only grow back one inch a month - so the arm has the longest way for healing. Muscles atrophy (die) between 12 and 18 months and when you do surgery, it has to regrow from the source again. So let's say that Josiah's hand is not moving and his arm is 8" long. It will take 8 months for the nerves to get down to his fingertips. Which leaves you a very short time frame if you have to have surgery to help regenerate the hand.

A bpi specialist will be able to look at Josiah's arm and know, by the movement, what he thinks the injury is. But it's not the end all - it's just a general guess. Sometimes they will ask you to do an EMG test to see more specifically what is wrong.

Does your neurologist have experience with bpi's ? I am asking because there are still so many doctors who think that all bpi's get better in a year and that's just not true. Some do - some don't. If your child needs surgery it'll be done somewhere between two months and 7 months of age....and it is mostly determined by what movements come in and what movements don't (and possibly the results of EMG testing).

About the PT - does this PT know how to manufacture a splint if your son needs it? Does your son have a waiter's tip? If so - and the PT doesn't do splinting - you will have to find an OT who will be able to quickly manufacture a little hand splint and follow the progress. Maia had about six little hand splints - it was a slow progression to get her hand to a neutral position.

Whether or not you find someone in your area, you can send a video tape of Josiah down to Texas Childrens Hospital for another opinion - no charge. You can call Lisa Davis (nurse coordinator) at 1-80-364-5437 x 3290 and talk to her about what you are seeing with Josiah. And also - to send the video - the mailing instructions are found here: http://wwww.injurednewborn.com/maia/video.html You can read more about Texas Childrens Hospital on their site http://www.texaschildrenshospital.org (patient care on left - brachial plexus) - there is a lot of information on bpi's there too - with great diagrams, etc.

I think there are also other bpi specialists that accept videos for evaluation - I think one of them is Dr. Waters in Boston...and there may be more.

In the Medical Resources section (home page, link in middle left side) - it is important to check out the questionaires that these docs filled out - it will give you a lot of information about their bpi clinic.

Don't wait a few weeks for your neurologist appointment - in case Josiah doesn't have finger/hand movement. Call a bpi specialist asap.

Also - a bunch of moms on here came up with a list of questions to ask the doctors.... we did it for all ages so some will apply and some won't. But at least it may jog your mind with a question or two that you haven't thought of yet. http://www.injurednewborn.com/maia/drquestions.html

And one last thing to this rambling of mine.... if you have to travel to see a bpi specialist, there is free medical airfare available for this purpose. Most airlines are really nice in helping families whose keeds need medical care out of state. http://www.injurednewborn.com/maia/travel.html

keep in touch,
francine

here's some more links for you:

http://brachialplexus.wustl.edu/medical0.html

http://www.texaschildrenshospital.org/C ... /guide.htm

Again, I can't say enough how happy I am to have found this site. I think I'm able to breathe just a little bit better. Josiah can move his fingers a little, he can definitely grip onto my fingers at times. Sometimes you have to press into his hand, but there's definitely strength there. Also, he can move his wrist and his shoulder. He shrugs a lot. The OTs have said that they have seen a little bit of movement in his elbow. Just a little and only a couple of times. Thanks so much for the websites you gave. Thanks for all of the information. I had some other questions but, of course, between the time of waking, feeding, changing diapers and getting here, I've forgotten them. Better get out that notebook to jot down such questions and ideas. We'll be writing again soon.

hey Joshiahs mum!

I can see you and Francine have got off to a flyin start!

I would just like to say welcome to the boards and its good that you found support so early on.

I am Michelle and im 17 with ROBPI. I didnt see a doctor until i was 16 bcos my parents didnt realise anythin was available to help me. It was when i was searching for a doctor who deals with erbs i found this site! its been amazing! i thought i was the only person and now im now.

Another thing...i play the piano, i drive, i play the trumpet and do everythin other kids do. Erbs palsy is a disablitiy but disabilies dont hold you back!

Good luck with your baby!

Michelle x

I am from Wisconsin, too, except on the other side of the state, near Mpls-St. Paul. My heart goes out to you. My husband and I were devasted when we learned about brachial plexus injuries. Francine's site and this one provide a wealth of information.

I can relate so well to your ambivalence about legal action. The doctor who delivered my son had been our family doctor for several years, and he delivered my first two as well. I decided not to go back to him, even for my postpartum check. I have not seen him since our son was born.

I recommend you at least make some preliminary contacts with attorneys so you can begin documenting things if you decide to take action later. Our attorney asked us right away to write down every detail we could remember about the delivery. I'm glad we did that because I probably could not remember all of the names, etc that I documented within the first few weeks.

I also concur with the advice to have a brachial plexus specialist evaluate your baby right away. We have been to Texas and also to Gillette Children's in St. Paul, Minn. so those are the only places I talk about from personal experience. Both have been excellent, in my opinion; very up to date on current protocol for this injury.

Hang in there! You are not alone!

Julie