United Brachial Plexus Network, Inc.

Can anyone out there please give us your feedback if your child was treated at one of these fine places. We are narrowing it down to these three. THANKS!!!

Matt,
I think they are all great places when I did my research. We chose TCH for both of Matthew's surgeries and have been happy so far. The best advise I can give you a make a list and write pros and cons of each, it kept my mind straight when deciding. There's so much info to sort through.
Cindy

Everybody has different criteria for how they choose a doctor and why. The very thing that I like about a group may be the very thing that turns off someone else. You will figure out what's important to you and then it will be an easy decision to make. Your will know it deep in your gut.

I'll tell you about our choice - but like I said above, we made our choices for our own reasons which may be different then yours.

We had met/contacted a few bpi specialists before we made up our mind. The one that we chose, (Texas) was too far away to visit but we spoke with them over the phone many times. Dr. Nath spent a lot of time explaining things to us and made us feel VERY comfortable with the team.

We did research on the team and especially on Dr. Laurent and found much that led us to believe that he was a gifted neurosurgeon.

But here's the thing that sold my husband - he was the main research person early on - it was the fact that they were the biggest clinic in the nation and that they did so many surgeries. He said to me - how can 50 even compare to 500? The experience level is completely different. A doctor who has done 500 has a wisdom about it - an intuitive aspect that the guy who has done 50 just doesn't have yet. Even our family doctor researched them and called them "the dream team". And once I spoke with Dr. Nath, intuitively, my gut said that this was it. We're very pleased with the results of their work, very pleased with the communication we have with Dr. Nath and the team and we trust their work.

You can read all about those early stages here:
http://www.injurednewborn.com/maia/homepage.html

The Shriners is local to us in Philly, but back then, a different doctor was doing the work. I was seeing this doctor personally for my own pregnancy carpal tunnel issues and he didn't impress me as someone who really breathed and lived bpi surgery so that's why we didn't choose them. Now they actually have someone that seems very committed to these issues.

We did not go to Boston nor have we contacted them because back then I didn't know about them. (almost 5 years ago)

Good luck in making your decisions. I don't envy you. Sending your child into the O.R. for this type of surgery is one of the hardest things you will have to do.

-francine

Hi Matt. How old is your child and where do you live?

Our son Mitchell is 7.5 years old and is treated at Shriners Hospital in Minneapolis. He had his first surgery there when he was 4.5 years old and just had his second one there last week.

We couldn't be happier with the hospital and doctor there...we're so blessed to have them. Mitchell feels very comfortable there and has had great success, so I think that counts for A LOT too.

If you have specific questions about Shriners, please email me missykosel@hotmail.com . I'll try to help you out as best I can.

My biggest suggestion about the Shriners is to make sure they have a good BPI clinic and an experienced BPI specialist at the Shriners Hospital you are considering.

Good luck with you search and in your decision!

Missy Kosel

Matt - I just want to make a small comment -sorry rich- but it's important for you to know that things like scars and movement coming back and all are VERY personal to each child. If a child has a scar that doesn't show or get keloided, is not about what surgeon you used, but about how the child's system heals. Same thing goes for movement - function - the whole thing. You can't even say that a partial rupture is better than a full rupture or an avulsion - it's SO personal.

Of course - a great surgeon, great therapist and great home life and home care are paramount but even if you have all of that put together, you won't be guaranteed success. Each child is different - each child heals different - each injury is different. It's quite amazing actually to meet the kids and talk with the families and see the differences.

I'm sorry - but I just felt I needed to share that
-francine

Matt,
I am not one to give advice about where to go for surgery b/c my daughter has never had any surgeries yet. Although I will tell you my experience of going to Boston to see Dr Waters. She will be 14 months this month and since she was only 2 months old we choose the Children's Hospital Boston to see Dr Waters. I was in contact with TCH at that time over the phone also. They were always so much of a help. Anyway, I did much research to find the right doctor for me and my search narrowed down to Boston. I was happy because we only have to travel 3 hours to see Dr Waters. Ever since our first appointment I have been very pleased with the staff, hospital and most importantly Dr Waters. The thing I liked best was that he will sit down with you for as long as it takes until the child is comfortable with him. He will talk to you about everything from how your son was born to what he thinks will happen within the next month or two. He will tell you what kind of research and studies he is currently involved in and make this a part of what he sees in your child. I am sure other hospitals are great in these ways also, but this is my experience at Boston. I usually get to meet other children with Erb's Palsy at my appointments and Dr Waters is the one who introduces me. He once brought me into a room where a little boy with Erb's Palsy was being treated. He showed me the movements that this little boy can and cannot do and he explained where my daugther was alike and different from this boy. It was something that I will never forget. Oh, and another thing...even though we only see him once a month or every other month...he alwyas remembers who my little Ella is. If you have any other questions about Boston, feel free to email me. Best of Luck finding where is right for you.
Krista (mom to Ella 13.5 months LOBPI)

Mat,

We also go to Boston. We live in New Jersey and travel 5 hours to see him. The most important thing that sticks out in my mind is the fact that Dr. Waters was more concerned with Michael's cancer than his arm. He said no arm is more important than his life. Surgery on the arm will have to wait. Other Dr.s who are BPI specialists wanted the oncology staff to change his chemotherapy protocol to "..save the bracial plexus..." that comment made a profound impact on my feelings. To me, that told me they didn't look at my child as an individual, but as an arm.

Patty

Matt,
Although we too are in the process of making this decision, one thing that we have been trying to factor in is the follow-up care. I've heard that the post-surgery therapy is very important to recovery. So one more thing to consider (as if there isn't already enough), is how you will coordinate post-surgery therapy. I believe most hospitals will mail the surgical reports to whomever you specify, but you should check first. (I'm sure those who have gone through the process would be able to tell you.)

Another thing to consider is getting the opinions of all three places before deciding. It's a huge decision whether to HAVE the surgery, a separate decision is WHERE. Francine brought up the issue of "experience" -- which is very important -- and it might be different for different TYPES of surgery. Some clinics may have more experience with secondary but no experience with primary, etc.

Good luck. Tina

our daughter is almost 4 months, and we live in nj