United Brachial Plexus Network, Inc.

Dom,

I think many of us here have had a similar experience to yours. Like you, I was told that my daughter would heal (in 3-6 weeks) and all I had to do to see this happen was move her arm back and forth gently across her body (chest area) and to keep the arm pinned to her chest. They also said, she had something called Erb's Palsy. This is the only good information I received from them b/c it let me search the correct name on the Internet. Heck, it was the only true info they gave to me! When I returned home from the hospital after her birth I was not worried b/c I knew she was only a few days old and I trusted what the hospital doctors had said to me. I thought I would be seeing a full recovery. They almost made it sound like a pulled muscle that you had to give it time to heal properly or something. Anyway, the Internet brought me here. I learned so much from other parents and from poking around on the site. I found more information on this injury at other Internet sites as well and when I put it all together I knew I was lied to! I knew that I had to find therapy for her ASAP. I knew that I had to find her a BPI spcecialist and neurologist. From that time on, I cried and cried pretty much everyday. I was so sad for Mariella. I wished I could just rewind time and do it all over again. I wanted to change everything, but I was powerless! I worried about not only what kind of recovery she would have, but also about her future already. It was like holding a 3 day old baby and trying to picture her at 3 years old, 6 years old, 10 years old 18 years old etc. And just wonder wonder wonder! I was heartbroken to say the least. I did what I could. I put her in therapy. I found a specialist. I did proper ROM exercises on her arm many times daily. I TOOK THAT STUPID PIN OFF OF HER ARM! I prayed.
Today, she is doing well thanks to a secondary surgery that she had at 2 years and 4 months old. She will be 4 years old at the end of this month. She is growing like a weed and doing very well with everything in life. She is happy, smart and outgoing. She doesn't let anything stop her or get in her way! She is back in formal PT once again for winging scapula issues and also for certain motions she cannot yet achieve. I still pray for her. That's all I can do besides get her the proper treatments. I pray instead of worry, but it took me a long time to get this far and feel this way. Years for sure!
Good luck.
~Krista~

I was told also that she would be all better in 4 to 6 weeks! Ha! B.S. You dont heal 100% with an avulsion. I can only tell ya keep up the therapy and see a BPI SPECIALIST Not your primary care doc. See someone who knows what bpi is. Its a hard road and I hope your child does return to 100% but learn as much as you can about the injury and dont trust all doctors or pt/ot's. Always get 2nd and 3rd opinions if it doesnt sound right to you. Good Luck and God Bless you and your little one.

P.S. Get your hospital records now all of them they might come in handy in the future.

First let me say I am SO SORRY this has happened to your family. I think the more time you spend here you'll find we all have a different story except the ending is the same. But just know you have lots & lots of people to lean on & get advice,knowledge, & wisdom from.

Michelle
mom to Ashlee
9 month LOBPI

Welcome to UBPN and congratulations on the birth of your daughter!
It pains me to hear yet another story like this. However, we are hear for this very reason.
I'm not sure where you are located, but have you started your baby girl in formal therapy yet, as the hospital suggested? Therapy is very important.
Have you had a pediatric neurologist evaluate her? Any tests been done?
Is there a Brachial Plexus Specialist in your area that can follow her?

Are the blue spots bruises? Or are they Hemangiomas? My son still has his Hemangiomas and he is 11 years old (Shoulder Dystocia birth with 'transient LOBPI') on his back.

I wish you and your family all the best!

Peggy
mother to Emma (9 years, ROBPI/ Joel- 11 years, LOBPI)

Dom:
where are you located...maybe someone is from your area and can help with drs and therapists. good luck and enjoy your new precious baby!

Welcome, but so sad that you have to join us to discuss this preventable injury. My son is 7 1/2 and the stories above are about the same....oh, it will get better, keep doing ROM exercises. We have heard it all. There are BPI specialists.....try the medical directory on this sight. There is a ton of informative literature on this sight. I will say that you need to see a BPI SPECIALIST ! It is so important to get things in order early. My son has had two surgeries and can do everything that everybody else in his class can.....it was alot of work but well worth it......again welcome.......Gayle mom of Brandon ROBPI!

Hi, thanks to everyone for replying
Our daughter has seen a bunch of specialists/pediatrician but no neurologist i believe.
They've given us exercices to do and our next appointment is in 1 month. That seemed very long to me, which led med to research my own information and brought me here

Peggy, the spots were bruises and disapeared after 2 days. Doctors didn't think they were anything serious.

Unfortunatly i live in canada, so the human ressources listed here aren't available. Althought i'll go anywhere in the world if i think it could help my daughter.

Dominique Gilbert

In the medical resources here there are a few listings under Canada. These are for specialists.

http://ubpn.org/medicalresources/canada-bpi.html

You can always send a video of your child to several different doctors here in the US for a free evaluation. Just a thought. Doctos that I know of who accept videos are Waters in Boston, Kozin in Philadelphia, Nath is Texas. You can do that for a second or third opinion.

~Krista~

Hi Dominique,

Where in Canada do you live? We live just outside of Toronto, and I'd be happy to share any info I have found. Feel free to email me.

Oh and before I forget....congratulations on the birth of your baby girl

Shellie