United Brachial Plexus Network, Inc.

My son is 15 months old and was diagnosed with erbs palsey when he was born. I had NO idea until today how serious it actually is. I have placed way too much trust in local medical professionals and am afraid I have ruined my child's chances of ever having a normal life. I was told today that his arm would never fully recover. After reading a few posts here I am concerned that I was given a "snow job" about his condition....I was told "prognosis good" " he probably just needs PT". I am thankful to have found this site. I have already contacted an attorney specializing in birth injuries. Thank you for listening,
Dena

Hello Dena,
My name is Dana and I am sorry to hear about your situation. Where do you live? I live in Florida and have a 23month old with left bpi. We went to Miami to see a great surgeon there. Feel free to email me if you have any questions. danarumbaugh@hotmail.com.
Good luck,Dana

Welcome to the board....I'm so sorry your baby was injured. My son is 12 almost 13 and has robpi. I'm in AZ. Good luck on your quest for more information....if you hang around here you will get lots of support. I haven't looked at the "share your story" page lately....You might want to consult someone who knows about what you write here being used in court....It seems in the past I read something about that.
Well again welcome!
T.

Dena,
Hi I'm Cindy mom to Melanie (2 1/2) and Matthew (1) both right bpi. Melanie recovered from her injury however Matthew's is more severe. He had surgery in October and currently received physical therapy, occupational therapy, acupuncture, and chiropractic with reiki energy.

Hi Dena,
I am sorry to read of your situation. My daughter is now 6.5 months old and was also diagnosed with Erbs Palsy at birth. Our local medical professionals also said she would recover and they never told me how serious this thing called Erbs Palsy was at that time. If I didnt find this website and these people to help me who knows where we would be today. I am thankful that I have found the right direction to head in. It isnt your fault for what decisions you made for your son. Obviously you are going to listen to the professionals if that is all you know of doing.
We are also very lucky to live in CT and have Dr Waters only 3 hours away in Boston at the Childrens Hospital. He has helped us greatly!
Where are you from? Has your son been in PT since birth/infant?
If you have any questions or need someone to talk to feel free to email me:
LDYBUG4134@AOL.COM
In the meantime, I wish you the best of luck and dont be discouraged.
Take care,
Krista

Hi Dena
I am Nicki and my daughter Hannah just turned 2 yrs. She has Lobp. I too was told by our local doctors that she would get better and not to worry. When she was about 4 months I went to a different doctor different in a different town. He refered us to a specialist. Everything is going ok. She doesn't have full range of motion. We are still doing OT 1x wk.

You might want to try a chiropractor. Hannah seen one for a couple of months after she was born. I know your son is 15 mo. But I don't think it could hurt.

Nicki if you need to talk nicki@g2a.net

Hi Dena,

My almost 4 year old Maia has a left obpi- just had her 3rd surgery and is recovering well. We actually hit a huge landmark two days ago - Maia was able to ride her tricycle for about half a block - first time ever. Maia loves Bob the Builder and Dragontales and Clifford the Big Red Dog. She goes to school daily and loves to play on every kind of playground imaginable - we go on playground tours on weekends. She is in gymnastics once a week, swims with a floatie on and takes music classes. She can paint and even do some funny magic tricks. We are very proud of how far she has come...and you will be just as proud of your little one too! It's not an easy road and there are many ups and downs, that's for sure - but the one thing that this injury has done is brought us to close to her!

There's a lot of really great information on here - check out http://ubpn.org/awareness - birth injury button. Also check out the new medical resources area (from the home page).

I have a 'prevention' site http://www.injurednewborn.com and feel welcome to send me a picture... and Maia has her own site http://www.injurednewborn.com/maia/homepage.html.

I'm so glad you found us! Educate yourself as much as you can. The one thing we all learn is that you must be your child's advocate. We will help you in any way we can.

take care,
francine

ps - my eldest daughter's name is Adena!

Hi Dean

Welcome. So sorry your precious little one was injured, but so glad you are now finding some support and good information. I have a 14 mth. old son with a RBPI. I too was told that my baby would be fine. They told me 24-48 hrs. and he would be fine. All the doctors down played the injury and no one ever referred us to therapy or to a BPI specialist. Thank God for BPI websites and this board, or we would still probably be in the dark. Please feel free to email me anytime if you have any questions or just need to vent. Take Care.

Hi Dena. Welcome to our family. Sorry your baby was injured but you found our really kewl site! There is lots of info in Francine's site and any questions you have just ask away. Keep educating yourself in ref. to this injury there is so much to learn. My son will be 8 mos next week (sob) 4 mos away from his 1st b-day (sob). His name is Aaron and he has been such a blessing! Feel free to e-mail me anytime.
Paula

Welcome to the board. I'm so sorry your baby son was injured. Am I correct in assuming he is your 3rd child? My 3rd baby--who is almost 4 yrs. old now--was injured at birth. She suffered a severe and permanent injury. Thanks to this website I found support and information about the brachial plexus facilities in the U.S. that have current knowledge of surgical and therapeutic intervention. We chose Texas Children's Hospital in Houston; my daughter has had 2 surgeries with remarkable recovery.

There are support groups across the country where families like ours can gather to meet, exchange info., and give our kids the opportunity to meet other children who are a lot like them. We even have picnics in the warm weather months and you're welcome to join us at one! Our Ohio BPI support group is having their 4th annual picnic June 1st in Columbus, OH. If you live within driving distance (you don't have to be from Ohio to attend), we'd love to meet you and your family. You can visit:
http://members.aol.com/kritz74433
for more info.

Francine Litz's website also lists the upcoming picnics and gatherings:
http://www.injurednewborn.com

Karen
ohioerbspalsy@aol.com