New to the board

[suzann4]

Hi Everyone, I am new to the board. My daughter who is now 17 1/2 months old was injured during delivery. She was diagnosed with brachialplexus. She now has 90% usage of her arm. The doctor said that her nerves were stretched. They tried to play it off in the delivery room that it was just a stretched nerve like a rubber band that would go back into place. The pediatrician did not mention anything about therapy or specialist. Thank God for my friend who knew of another child with a brachialplexus injury. She suggested that we see a orthepedic doctor. I would have never known what to do. I had to do the therapy excercises with her for over a year. At our last visit the doctor said she was doing well and had regained 90% of her right arm. It was a very scary ordeal. Her right arm was injured, but she eats with her left. So down the road I am not sure what kind of problems she will encounter. It is still early to tell how much this injury will affect her down the road. I still remember when she was born her right arm was completely dead no movement. Now she seems to have recovered very well but I still worry. Is there anyone out there that has a similar story and their child is older? How has your child recovered? Thanks for listening.

[francine]

Hi Suzanne and welcome to the message board. I think the best thing you can do for your daughter is to have an appointment with a brachial plexus specialist. They will be able to give you advise on your daughter's future needs and what you should be doing currently...if anything. Tell us where you live and maybe we know one in your area? Also - even if you are not local to one I know that a couple of the specialist will accept a video tape of your child to review.

BTW - if you'd like to learn more about brachial plexus injuries, there's a lot of good information found in our awareness section here... http://ubpn.org/awareness - look under Birth Injuries.

I hope that if you do see a specialist that all they give you is great news!

-francine

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

[suzann4]

Hi Francine, I will look into a Brachialplexius specialist. Right now my daughter sees a Orthopedic specialist. She seems to be doing well, but I would like someone who sees these types of injuries to look at her just to be on the safe side. I will look up the sites that you gave me. Thank you for your support and help. Suzann

[suzann4]

Hi Francine, It's me again, I forgot to ask you where do you find a Brachialplexus specialist? I thought the Orthopedic Doctors handled it. I live in New Jersey. We take our daughter to Dupont Hospital in Wilmington, Delaware which is only 15 minutes away. Can you tell me where to find one? Im sorry I didnt ask that in my first message but I misunderstood you. My lawyer seemed to know more about this injury than my pediatrician. He keeps telling me that my daughter will be just fine. Sometimes it makes you wonder.Well let me know. Thanks again

[crystal]

Hi my daughter is 19 months old. Jade had surgery at TCh when she was 6 months and the mod quad at 15 months. she has about 40% of her arm back. im so sorry that your daughter was injuered. I too wonder about the futureof her and our family. It affects everyone. I think you should do what fancine suggested. Dr. Nath is a great BPI specilist. He is in Huston TX. We went down from St. Louis 3 times to see him. By fate CHris was transfired to Austin TX later. so we are closer. good luck and welcome.

[crystal]

sorry i meant to say she had primary surgery at 6 months and mod quad at 15 months.

[francine]

HI Suzanne...

well there are 3 (so-called) bpi specialists now in this area. I have dealt with one of them and won't ever return there - they were rude and lied to me. The other two are very new. One came last year and he has done 3 surgeries to date. I don't know the experience level of the other one. We heard from our insurance case manager that Dupont didn't specialize in BPI but she said that they are very good for other things (they wanted us to go there for Maia's other issues). We went to a clinic in NY and won't ever return there either. I guess that's why we go down to TX. If you do a video showing all that your little one can do - they will let you know what they think. Costs nothing - easy to do. http://www.injurednewborn.com/maia/video.html
(just change the MC to 1610.10).

There's also a good clinic in Boston, Mass - Dr. Waters is there. He is an orthopedic surgeon but specializes in bpi's. Either way it's 4 hours of traveling, it's just a matter of whether or not you want to drive or fly! And getting 2nd opinions is always a good thing anyway. There is free medical airfare http://www.injurednewborn.com/maia/travel.html and there are medical discounts for hotels as well - so it's accessible.

My website discusses TCH in depth. And on my site I have a link to a page about Sarah who went to Boston (it's in the link for other family experiences).

Also - you want to contact brachial@aol.com Tom & Trish Cirino to get yourself put on the mailing list for the PA support group - they run the Brachial Plexus Palsy Foundation and there's a picnic once a year where the docs from TCH come up and meet with families and check on the kids.

And if you email me your address I will get you a copy of the last Outreach - it's a wonderful publication that UBPN's Bridget McGinn creates.

Also - come to chat on Wednesday night at 10pm. There are a few families from NJ that login to chat. Chat is found at http://www.injurednewborn.com/chatroom.html.

So there ya go.... hehehe I gave you a lot of stuff to do right?

hope to see you wednesday in chat,
francine

[suzann4]

Hi Francine, You are very knowledgeable about brachialplexus. I feel so stupid compared to the people on this chatroom. The Orthopedic Surgeon that we are dealing with did not give me any of this information. You are probably right about DuPont. Our Occupational therapist did not have alot of children who had this injury. I recently purchased a computer so I am new with the internet. I wish I had access to the internet when Jaime was injured. I was shocked at all the information that is out there. I am going to talk to my husband about the doctors and possibly sending a video. Boston is only a 1 1/2 by plane. I am going to look into it. Did your daughter get her injury when you were delivering her? I believe Jaime ran into problems durning delivery, the doctor was yanking her out while the nurses were pushing down on my stomach like they were kneading bread. I dont know. All I know is that this should not have happened to her or to any of the children out there. I will give you my email address. Email me a note and I will give you my home address. I would be very interested in reading Outreach info. I will also try to get involved in the chatroom on Wed. THANK YOU VERY MUCH for all of your insight and information. I wish I would have a opportunity to chat earlier on. I was a real mess when it came to my daughter, everytime I had to explain what happened to her I would burst out in tears. This chat room is a lifesaver. My email address is smcmar24@snip.net I look forward to hearing from you.

[suzann4]

Hi Crystal, Dr. Nath seems like he is the best I see his name all over this message board. How did your daughter get injured. Delivery? I was just wondering what reason your doctor gave you. My lawyer had to explain it to me. My doctor told me that she could have done it to herself in the womb? Does that make sense? I am learning so much from this message board. I feel like I have been in the dark. Jaime is doing better now, you wouldnt know she had a injury. She is a little tomboy, but I still do not know how the injury has effected her it is too early to tell. How is your daughter doing now? Does she have any pain? Francine gave me alot of information I am going to look into it. It was nice meeting you hope to talk to you again. Suzann

[Jamie MA]

Welcome to the boards Suzann, I hope for the best for your little one-- everything Francine has offered you is what I'd repeat anyway
Our family experience is with Dr Waters of Boston, he's great and they have a fantastic program too- if you want anymore information on them, feel free to contact me.