United Brachial Plexus Network, Inc.

Hi I'm new to the board. I have a 3mo old daughter who's right arm was injured at birth. She has been going to PT since birth and to a neurologist. She has some movement but it has been suggested we take her to TCH for an evaluation. Our appointment is 1/9/02. Can anyone tell me what we can expect or have any advice?
Thanks

Hi Ellen and welcome to the message boards...

I have a whole bunch of info abou TCH on my website...
http://www.injurednewborn.com/maia/tch.html

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

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

and more.... the home page is http://www.injurednewborn.com/maia/homepage.html

My daughter has had three surgeries - her primary was with Drs.Laurent & Nath and the other two were with Dr. Nath. We believe in their work. We trust them with our daughter's life. And the results have been fabulous.

It's been a long time since we went to primary clinic but when we went we waited for a long time and saw Dr. Lee - neurologist, Dr. Laurent - neurosurgeon, and Dr. Nath - plastic surgeon. By the time they were done wiht us, we understood a lot more then when we walked in there and felt a comfort level strong enough to allow them to operate on her the next day.

The BEST thing that happened that day at clinic was that I met with two other families in the waiting room and we developed a friendship and relationship that has been unbelievable and now over 4 years later is still very intact and strong.

Come with questions - but honestly - how do you know what to ask at this point? It's so early in the game. I think it's really important for you to educate yourself as much as possible so that you can formulate your questions. Also, a year or so ago we got together on here and came up with a list of questions - maybe this will be helpful to you at this time?
http://www.injurednewborn.com/maia/drquestions.html

To learn more about bpi - we have quite a bit of information right here on this site
http://ubpn.org/awareness - go to the resources section
then from the home page click on the button on the right side for Information For New Parents
Also - email Nancy Birk at nancy@ubpn.org and send her your address so she can pop the latest Outreach in the mail for you.

My site is my journal of our experience from then to now... I hope that reading it will be helpful for you.
Please ask as many questions as you can of us - it seems that we really have a great rounded group of families in different stages that come to the message boards - of course, right now with the holidays, we are a bit slow - but don't give up on us ok?

Feel free to contact me anytime,
francine@injurednewborn.com

Happy Holidays and I do hope that you find as much comfort and compassion at TCH as I have and still do.

Good luck and safe travels,
francine

ps - where do you live?

PS - come to the General Board to post because most familiest post on that board

Thanks so much for the information and website. We live in Safety Harbor Florida. There is so much to learn. I had never heard of this injury before Vanessa's birth. And like many other people out there we were told it would be fine after a little PT. It is very upsetting that more information is not given to you concerning this injury, and the risk of it happening. Luckily our Neurologist is very proactive and is getting us out to TCH because he feels it would be best for the experts to take a look.
Thanks Again
Ellen Memmo

Ellen - I have no clue where Safety Harbor is but there is a big support group out of Melbourne run by Leslie Mckibben, PT who is so well versed in bpi (and she is tbpi herself)... even if you are not close to where she is, I'm sure that her group can be an excellent resource for you.

It's the Space Coast group - find the information at http://ubpn.org/awareness look in the worldwide support groups

Happy Holidays!
-francine

Don't worry - nothing scarry or painful. Our son had surgery there (TCH) at 5 months to correct Erbs palsy and we would do it all over again.

The kids like the big fish tank in the waiting room. Everybody is friendly.

We are from as far North from Texas as you can get without going to Canada and the people were nice enough to recommend places to stay and places to eat, ect. The Hampton Inn is very nice and clean and the Magnolia Grill has a very good brunch. It has been 4 years since we went there.

Our son got a little better before his surgery and we had him evaluated. We chose the surgery. No regrets. We did not want to wonder if we did the right thing or did not do enough. He as it turns out had scar tissue wrapped around the injured nurve that needed to be removed and a bypass was also done.

Today, people forget there was anything wrong even after they have been told. People like his preschool teachers. He has a very thin scar on his neck that most people do not notice.

He is now learning how to swim without a bubble. He also takes gymnastics class and loves it. He is learning how to write with his non-erbs arm. He likes basketball and baseball and fishing.

He does not raise his erbs arm up quite as high as his non-erbs arm and still does not bend his elbow without moving his arm away from his body. He does not know he is any different from any of his friends and they do not know he is any different from them. I am very grateful for this as kids are cruel without understanding that they are being cruel.

It is scarry the thought of having a child undergo surgery. Chances are your child will have to undergo surgery at some point in his or her life. What is even more frightening is not knowing if you are doing the right thing.

We are certain we did the right thing but we made our decision individually as you will have to do. I can only say as I have before, we have no regrets and we never say, "what if..." We know we did everything we could.

Everything will be explained to you while you are there. They will examine your child. As I recall, they offered a lolipop to him by placing it in his erbs arm and tried to see if he could put it in his mouth on his own after allowing him a taste with assistence so he would know what it was. They also did a test to see if the nerves were working. Not painful as they will use it on you first so you know it is not painful but it is a little box that sends electricity to the nurve. Wont even give static to the hair it is so gentle. Bottom line - nothing to be squeemish about. Believe me you will feel better for going no matter what you decide.

Oh yeah - we were told by the local neurologist that people with erbs palsy couldn't hold thier hand palm up ever again. You know the old, "give me five," and I will admitt that our son is off a few degrees from being completely flat but he does it so well that nobody would find his hand position worth a second glance or odd.

Surgery isn't enough alone. You are still looking at years of therepy. We saw a PT for the first three years and see an OT now. But and a big but - People don't notice the difference between our son and other children. He doesn't notice the difference between him and other children. I don't think he will ever have to. I know lots of children like him are not as lucky and I hope your child does just as well if not better.

Just don't let yourself get too overwhelmed by all the horror stories of children forever in pain. There are good stories out there too. Our son doesn't suffer from erbs palsy anymore, he doesn't suffer from anything as he doesn't have to sit on the sidelines and watch life pass him by. There isn't anything that he wouldn't try and there isn't anything that we wouldn't let him try. He is too busy keeping up with the other kids for us to worry about if he will be alright.

I have no reservations about the quality of care at TCH. Would not discourage anyone from going there. We went there because we believed they were the best of the best and we still believe that they are the best of the best. We could have gone anywhere and we chose TCH.

I will agree with everything that Burdz said. My son had surgery at TCH twice, They are great. Extensive therapy, now he doesnt' need any, he is four!!!! TCH is wonderful and they are truly not only BPI child friendly but family and sibling friendly.

A funny story about my son't last visit. We went there for one day to have Dr. Nath take a look at him. Dr. Nath walked in the room, my son said nothing. Dr. Nath asked my son to raise his arm above his head, my son said that he couldn't. This went on for 5-10 minutes when Dr. Nath looked at me with this silly look. All of a sudden my little guy says,"I can raise my hand for that lollipop in your pocket." Dr. Nath was busted. Yes, that is how they check for hand to mouth and my son remembered that from 18 months earlier. That is how impressionable they are. My son is 4 1/2 now and calls the doctors at TCH his surgery "friends"

That is a precious story!! Thanks for sharing!

Thank you all for the information and the wonderful stories. We just got back after our appointment at TCH and I feel very encouraged by what they said. Dr. Lee said she see's movement in all areas. Some better than others. We are going back on 3/24 and have a surgery scheduled, however Dr. Lee said if she sees more improvement she probably will not need the primary surgery. To us this was the best news we could have hoped for. Vanessa has been progressing with PT rapidly over the last month and I am praying it continues that way. If she does not progress I now feel allot more confident about surgery at TCH.

Glad the appointment went so well - I will keep your little one in my prayers that she'll get turned away from primary! But if she doesn't know that she will be in the best of hands.
-francine