United Brachial Plexus Network

For those of us with babies it makes it very hard for us to know what to do, which way to fly. people that live in texas go to philly, people that live in philly go to texas, how do we know what is best for our child. i live so far away from either place, i just can't go interview doctors. so tell us new mothers, what questions do we ask, if you didn't like a doctor for a specific reason and it may help someone else, tell us why.
im sorry, our lives are just turned upside down by all of this, that i sometimes can't think a thought in a 24hr period without it involving my baby's injury.

It is an excellent question and I can well understand your confusion, as there are certainly loyalties to doctors out there who have done wonderful things in treating this injury. Those loyalties are often times very strong which is to be expected. We invite all to share their experiences as long as they do not attack other institutions or doctors.

UBPN has a medical resource directory, and while it is not comprehensive, it does include many, if not most, of the brachial plexus injury specialists out there. We have included not only the contact information for the specialists/clinics but also asked each of them to complete a questionnaire so parents like yourself could get a feel and an understanding of their philosophy and approach to treating this injury. You can find the directory at:

ubpn.org/medicalresources/

We are also expanding the directory to include therapists and that directory is growing on a weekly basis as the therapists are sending in their completed questionnaires.

I hope this helps.

Nancy Birk
UBPN President

I'd be happy to email you my personal viewpoint of why I live in Philly and chose Texas and will continue to choose Texas.

francine@injurednewborn.com

I know you want to stay anonymous so set up an anonymous hotmail account and email me that way if you wish.

-francine

My personal experience and advice....
GO WITH YOUR GUT!!!!
I have a 3 year old son with a Right OBPI. I live in Wisconsin. We have been to the Wisconsin Childrens Hospital in Milwaukee. University of Wisconsin Childrens Hospital in Madison. Childrens Memorial Hospital in Chicago. and Texas Childrens Hospital. My son was evaluated at each one, and I too did not know what questions to ask. So I chose a doctor based on my gut! Here it goes.
I met a lady who gave me great advice and I love to pass it on. Take it or leave it. It worked with us.

"There are 2 ways to approach treatment for BPI. Aggresive. and Passive. In a nut shell...passive involves therapy both physicla and occupational. Aggresive includes the same and possible reconstructive surgeries. She told me to pick one ans stick to it! We chose aggresive.
Now it was time to pick a doc! I still didnt know what to think and how to approach it. I put a call into Lisa Davis at TCH. She called me back. We talked for almost 3 hours. She told me everything I needed to know and more. what to expect. what to look for. what to do to help him. I cried, she listened. We laughed. She eased my mind. At that point I chose TCH. I followed my gut.
I've heard a ton of people (INCLDING DOCTORS) say that TCH just likes to cut kids up and expieremtn. This is not our experience with TCH! We were schedulued for the primary surgery. we went down there. An entire team of doctors evaluated my 5 month old son for 2.5 hours. NO SURGERY WAS NEEDED! I followed up with the video tapes and yearly picnics... and this passed summer it was decided that Jared needed the mod quad...(great info on injurednewborn.com and ubpn.org for the surgeries...etc.). I questioned it. Still I stood steady on our decision to be aggresive. Had the surgery. I questioned my decision a lot. 2 months out of surgery now. I'D DO IT 10 TIMES OVER!!!!!
My son can do things now I'd never dreamed he would ever do again!!!
We chose Texas. Dr Nath. I am very happy with that.

Now..as someone posted earlier.. there are many people with strong opinions on this board. take it all in and make your own decision! take time to observe, collect thoughts...ask questions...cry...vent.. but make your own desicions.

Another HUGE factor is insurances... do some research, whta will be covered and wont be. Shriners I beleive accepts all insurances and (I THINKKK!!!!!) takes care of all other bills that ins doesnt pay..(look inot that..i'm not sure) I have BCBS PPO. We are good at TCH and hopelfully soon be really good there as far as coverage goes.

Please feel free to call me or email... even if you just want to cry..or scream.
There were a lot of moms who listened to me. It does help.

Kara
608-758-9010
rutherford23@charter.net

were do you live?
how old is the baby?

What is best for your child is what feels right to you. We started out at Texas Children's and we live in PA. We had another surgery there and after the fact after more research came out I do not agree with what they did and continue to do. Then Matthew was up for another surgery which I didn't agree with before it was even an issue for us. When it became an issue I got other opinions. I found that better options were available elsewhere and Texas Children's does not perform the type of surgery Matthew needed. You could contact doctors via email and send video tapes to get their thoughts on treatment. The best thing we did was keep a spreadsheet of recommendations and treatments/surgeries. I also look at clinics like restaurants - your best friend may love Olive Garden and you may think it's the worst Italian food you've ever had. Hope this all makes some sense it's been a long day.

Cindy

I'm sorry about what you are going through. I know how hard it is. My son has had two surgeries, both at TCH. I live in South Jersey and won't go anywhere else. I chose Texas because of the experience there and also because I didn't know much at the time about my son's injury. Don't get me wrong I had all the information in front of me but I was so overwhelmed by it all. I didn't even know that Shriners existed, and I grew up in Philly. I feel that my son is doing so well because of the care he recieved at TCH. Like another mother said, what is good for one child may not be for another. I have heard good things about Shriners and I have heard bad, but I have heard both about TCH. We have to go where we feel most comfortable with. I won't let anyone but Dr. Nath perform surgery on my son, but that is how I feel. I feel comfortable with his work. My son has been turned down about 4 times for surgery. He just recently had his second surgery at 3 years old. Before this surgery he wasn't able to supinate, or even get to neutral, he is now able to hold his hand at neutral and is supinating. His progress is amazing. We all face these decisions about surgery, whether to have them done, where to go? The best advice I can give you, is ignore all the bad things that people are going to tell you about one doctor, that is not a reason to not go to a doctor, but research that doctor. There are quite a few BPI specialist in this country, though I would say my son's is the best, others will not agree, so I won't say that. I will say that I have heard good things about all of them. You will in the end make the right decision, you will do what is best for your child. It will also get easier. You have many resources in fron tof you, use them, they will help you answer many questions. I will keep your family in my prayers, and remember there are people you can turn to for help. We are all here for you.
Kelly

hi, I agree with you that it is very confusing to be making all of these decisions - we have all been there!! As a new mom, your first obstacle is the primary surgery and whether or not it is needed. This is a very long and delicate surgery and you only want the best team to do this. Do your research, send your videos, listen to the drs assessments and know that your final decision is the right decision for you and your family. As for the secondary surgery, there seems to be a lot of great surgeons (more than primary) out there who people on this message board speak about highly.
I believe there are two ways to look at the injury also - the 'wait and see' and 'aggressive' approach. But a lot depends on the severity of your child's injury and whether or not significant amount of movement comes back in the first 3-5 months. Good luck with your decisions and feel free to email me with any specific questions.
Our daughter is having secondary surgery at TCH next month (we live in New YOrk City), she is 9 months old and didn't need primary.

In reference to Shriner's they do not bill for their services (insurance or privately) This is not the reason why we went with them. )
Dr. Kozin in my mind is a miracle worker. Before going to him we were told our son would need therapy for the rest of his life. 5 months post op with Kozin and he no longer needs formal therapy.

Cindy

Cindy..
i didnt mean by offend you if i did so about the Shriners and how they bill.
the only reason i mentioned it is because for some of us (myself included) cost is a factor.

again.. sorry if i offfended anyone.
Kara

I know what you are feeling and how hard it is to make a decision that can affect the rest of your babies life. My advice to you is to get a feel for several different specialists and ask lots of questions to each one.
My experience:
After seeing a neurologist who was very familiar with BPIs we decided he was not the doctor for us. He was very pessimistic and that was NOT MY THING when my daughter was only 1 1/2 months old. Next we spoke to TCH since everything I read on the internet about Erb's Palsy also had the word Texas Children's Hospital in it. I thought right away that we would have to fly down there and they were the only ones who could fix my little baby. Boy was that misleading. Now, it makes it a little easier having the medical resources here on the site with different doctors and their answers to certain questions. To make a long story short,I am glad that I finally found Dr Waters in Boston. He is God to me and he has made so many wonderful decisions for Mariella. Ella just had secondary surgery with Dr Waters in Boston at the children's hospital. I look forward to seeing her results and I look forward to knowing Dr Waters for a long time. He will be our guy until the end! =)
If you want some info on him please feel free to email me. Ldybug4134@aol.com
Good luck making such a hard decision. You will do it!
~Krista~