Questions about Erb's palsy

[chicagomom]

My daughter was born in June after a very traumatic delivery. I was on bed rest for over a month, was told I'd have to have a C-section because of her size, and then was admitted three weeks before her due date because of preeclampsia. I was induced, and they went ahead with a "normal" delivery. My delivery resulted in a shoulder dystocia, and finally Erb's palsy in my daughter's right arm.

We were told by the doctors in the hospital that she would most likely make a complete recovery by 2, and that she should have OT through early intervention. I had her evaluated at 6 days old, and she's been receiving OT ever since (she's 4 months old now). Her OT had some concerns about her development, so I pushed for a PT eval. Now, they are telling us she has apraxia too.

We are very lucky that she has regained some movement in her arm so early-she came home only moving her fingers, and now can lift her arm from her shoulder!

It's frustrating to me as a mother that the doctors in the hospital didn't tell me about the other complications that occur with Erb's palsy. I feel like I am having to teach myself to be a specialist since none of the doctors or therapists are educating me.

Any suggestions? What else should I be looking for?

[mamaofsix]

Chicago Mom,

You have found a great site to share your concerns. My son is almost 8 months old and it has definitely been a journey with brachial plexus palsy. Are you currently seeing a a doc that specializes in brachial plexus palsy? I hear that there are some great ones in the chicago area. You can email me directly if you would like at stlbpi@yahoo.com. My son had shoulder movement and finger movement, but had severe limitions and we had nerve graft surgery at 3 months old. I am glad we did because we found out that 2 of the nerves were avulsed and 2 ruptured. The people here could probably tell you lots about what to look for. Every injury is different and BPIs are so complex. Many of the parents here have seen several specialists for the care of their children.

[marieke]

Take a look at the Medical Resource page
http://ubpn.org/medicalresources/us-bpi.html

Marieke 33, LOBPI (Erb's Palsy)
RN

[jill's mom]

Hi,

Sorry to hear you have been through so much and your daughter was injured . I too am from Chicago. My daughter is 20 mo now. There is so much to learn and it can be overwhelming. Make sure your therapist is experienced with brachial plexus. I'd be happy to share some of the resources I have found here. Feel free to e-mail me jeanettes_1999@yahoo.com.

[F-Litz]

Hi Chicago mom.

Your first sentence says it all: "My daughter was born in June after a very traumatic delivery." And because of the traumatic delivery there may be multiple consequences. BPI is just one of the diagnoses but there may be others that may not even be related to the BPI but are specifically due to the traumatic delivery.

For example, my daughter Maia (now 10) has a left severe bpi.

She also has a mild CP, apraxia, dyspraxia, diagragm involvement, sensory integration dysfunction, balance issues, gait issues, speech issues and much more and she has always been developmentally delayed.

These are the issues we navigate through every single day. It was shocking to piece it all together because there is not one bpi specialist who has a true multidiscipliinary team who looks at the WHOLE picture. You notice things -your therapists will notice things and you will piece them together. I even took Maia for this huge neuro-psych evaluation with multiple specialists and nobody pieced together the things the way I've been able to in these 10 years. And they can't really because a lot of this stuff comes by staying in tune and watching and keeping track of the difficulties that a child may have growing up.

And there are no two children that are alike - because no two children have the same birth trauma and they're not the same in any way at all. So the BP specialists basically just focus on their primary specialty - THE ARM.

As frustrating as it was for many years - I feel extremely empowered by growing up with Maia and Maia does, too and she's very successful in her old age (of 10) and is having a great and fun life! She does everything any other kid can do (just a bit differently). And since every person on earth is different - we're basically no different than anybody else!

I celebrate the positive and navigate the hard stuff with much more ease now than when Maia was little and everything I learned was a SHOCK to my system. I spent many years in depression. I hope you don't. There's so much information out there now and if you can't find it we can all help you.

The community started just a couple of years before Maia was born and I've watched it grow (and grow up). There are a lot of moms now with older children - maia's age and older who have paved the way for more and more information. The things we fought for back then - thank God - they are mainstay now.

So you are absolutely normal to be going through an incredible emotional process. Hey- I still do a daily cry. But rejoice, too and don't get too stuck - because your sweet little baby needs you for lots of good sweet lovin. And a friend of mine said recently so I will take the liberty to repeat what she said.... all kids need is love - and if they are loved - they can make it through anything

-francine

www.injurednewborn.com/maia8

and ps - Audrey Yasukawa, PT is at Laribida and she is quite knowledgable and experienced with the bpi community. She works with many non-surgical inteventions and can be a great resource for you.

[Kath]

Dear Chicago Mom
Welcome to UBPN Message Boards. Congratulations on the birth of you sweet little one. Remember to enjoy your baby as you go through these first difficult months.

Check out the Chicago Support Group, they use to be very active and I hope they still are. They would be a great support place for you and your daughter.

I am not an obpi parent... I am an adult obpi and can assure, you we do survive and make it in this world.
I am a wife, mother and grandmother and have had a life time with obpi.

As far as doctors go... you must be your child's first expert. Educate your self and it can be overwhelming for a new mother but you can better help yourself and your child. I've rarely met a doctor who fully understands all of the many complication regarding obpi.

There are no long range studies and no papers that I know about that cover the many different area of our body that this injury impacts.

I'm sorry your baby was injured and wish her the best for healing and function.

Kath robpi/adult/68

[chicagomom]

Thank you everyone for your support and advice. It's wonderful to hear about the experiences of others.

We were able to get an appointment at Children's Memorial Hospital here in Chicago to see their BPI team in December. We feel hopeful that we can learn more about our daughter's particular needs and more forward from there.

Thank you again!

[DianaLB1999]

I am so glad that you are following up. Stay on top of everything. The earlier the better.

[andream]

Hello there!

We are also in Chicago and have seen many of the Children's Memorial doctors. If you have any questions, please feel free to email me directly at andrea@twolittlemonkeys.org

Also, I would be happy to get together sometime. You could meet Ally and get a sense of her recovery/limitations thus far...just a thought! Good luck with your journey and keep asking questions!

Andrea