after surgery better or no change?

[bonniedrews]

Hi, My three month old daughter has Erb's Palsey in her left arm. We have been told, that if no more improvement with her arm is made in the next month. That she will be a candidate for surgery, the Doc said it was up to us to decide if surgery will be a option. He also told us that he cannot guarantee that her arm will get any better with surgery. That is not really reassuring when someone wants to cut your child open and operate on her. I would hate to have her go through this and then she doesn't get any better then what she is now. I really feel bad about her injury to her arm, I feel like it is all my fault that I caused this injury to her. I feel like I should have just told the Dr's that I wanted a c- section instead of having a natural birth. I should have know that something was wrong when my labor was lasting 26 hours. My husband says I blame myself for something that I couldn't control, but I can't help it.
Anyway enough about that, has anyone on this post had their child go through surgery for brachial plexus injury? did it improve the arm movement at all? or was it just the same as before? if there was a change how much of a change was it?
Thanks in advance and sorry for rattling on about my feelings,
Thanks again
Bonnie

[kksmommy]

Hi Bonnie. Welcome to the group. I am so glad you found us. I too have 4 month old daughter who was born with a right Brachial plexus injury (ROBPI) and have many of the same feelings you have described. We have just gotten to the point where a surgical consult was suggested. At first it was hard to grasp that surgery is a possibility. I was so confused about the doc I was referred to so I did some research (mainly on this site) and found a ton of great information. We are flying up to Philly next Wed. to see Dr. Kozin with the Shriner's hospital. This is just the initial consultation and I cannot wait to find out what he has to say. Thus far, our local docs have had no idea how bad her injury is and I am anxious to see someone who has seen hundreds of these cases. My advice to you is to really read the posts and ask lots of questions. If you are refered to a surgeon, make sure it is a BPI specialist (as I was not referred to such) that has experience. Most of the children in the posts I have read about have had surgery/surgeries and many have had improvement. This injury is frustrating because we have to be proactive about the care they receive. In the beginning I wanted someone to tell me exactly what to expect and what to do. That didn't happen and I had a delay in care and seeing a specialist. Please let me know if there are any questions I can answer about the process thus far and again Welcome to the group.
Ashley
Mom to Kayla 4 mos (ROBPI)

[cassidysmom]

Hi Bonnie,
Firstly if you ever need to share your feelings, here is the place to do it.....we all have been there and remember how scary it was at the beginning. In fact I was just reading my daughter Cassidy's baby book (she was a year yesterday)and I got all those feelings over again looking back at her newborn pictures, so don't worry about that. I know the thought of surgery is not a welcome one, however make sure you do all the research and as Ashley said speak with a doctor who specializes in these injuries....they are complicated and have varying degrees of severity. There are quite a few options, My daughter Cassidy just had the primary surgery (nerve graph) two months ago, and we were told the same thing by our doctor...there is no guarantee she will get better use, we were told that she has an 85 percent chance of getting better use than she had (she had no bicep or deltoid use) I'm sure the percentages are different with different doctors but to us we thought it was worth trying for. It's a personal choice and no parent should have to make it and no child should have to go through it, try not to blame yourself, I know it's hard sometimes I still do.....but time does heal things a bit. I am sorry this happened to your baby, If you ever want to talk or have other questions about the primary surgery and recovery don't hesitate to post here or email me at: vmichael_lees@hotmail.com
take care,
Dawn
mom to Cassidy 12 months
ROBPI

[Carolyn J]

Welcome Bonnie to the UBPN Family.
We give each other alot of love, support, information and shared Experiences. This definitely IS the place to VENT and RANT. We all do it here.WE understand.

You also a welcome to post and read ALL of the Forums Message Boards and there is No Such Thing As A Dumb Question

HUGS HEAL,
Carolyn J
Adult LOBPI/68 & Proud of it!

[clarissaf]

First of all Bonnie I want to tell you DO NOT blame yourself for this! I have a 7 year old son who has a LOBPI. He has had surgeries. He has made improvement with these surgeries, but I can only speak for our situation and not for others. If you'd like you can e-mail anytime. I wish you and your family many blessings!

Clarissa

[Amy Clark]

Hi, Bonnie,

I also welcome you and applaud your efforts to find information out on your own. I did the same thing 5 years ago when my daughter was born. To get right to your questions, my daughter had the primary nerve graft at six months of age. It was done by a well respected surgeon at Boston Children's Hospital. Her surgery did not improve her arm movement at all. In fact, she has had three surgeries - all with limited/no recovery. But I do not tell you that to say you shouldn't allow your daughter to have the same surgery, just to answer your question. I believe if faced with the same choice again, I would do things exactly the way I have done them. Some children recover - others do not. I hope and pray that your child recovers to the fullest possible extent.
To address your concerns of guilt in the matter, it may not have mattered if you asked your doctor for a c-section. I asked mine and he said no. At some point, you will most likely move beyond your feelings of guilt and begin to focus on the best possible care for your child. That's how it was for me.

Take care,
Amy Clark

[F-Litz]

Bonnie - my labor with my first child lasted 3 days! and she came out fine. My labor with my 2nd child lasted about 12 hours and she was injured. Don't blame yourself. Unless you sat up in the bed and yanked the baby out yourself which I doubt you did, you are NOT to blame! You hired a specialist to help you give birth and to know what had to be done. Some do the job well and some don't.

But no matter what, your child is an absolute blessing and thank God she is alive and well in every other way

big hugs,
francine

[BHorner]

Hi Bonnie! I had the exact same feelings that you are having after my daugher Madesyn was born. You do feel that it is your fault, I still feel that guilt and she is 7 now, when you see them struggle with every day things, it is really hard. The first surgery was SO hard for me, I thought I was going to loose my mind, my daughter was 7 months old when she had her first surgery. It was so hard, but I knew I had to had to do what I could to try to fix her situation. I really didn't see much after her first surgery, but of course I was expecting a complete recovery...didn't happen. But we worked on her range of motion and I know that that the surgery she had to repair the nerves(she had a complete brachial plexis injury)was a success due to the results of some testing we had done several months later. It is just such a slow process. So as hard as it is and as long as it seems to take to get results, I personally feel that it was worth it. I hope this helps you a bit and I hope everything goes well with you and your daughter.

[Salina]

I agree, My daughter is 3 years old and just had her first surgery and i agree to do anything you can to help your child it was hard for us to see our Daughter going through all this but i feel better now that i tried what i needed to do to help her.
Do whatever it taked and pray alot my daughter had surgery 3 weeks ago ill be praying.

[Mica]

Bonnie,

To echo the other posts, you never have to apologize for venting here, or asking personal questions. I've learned that no question is too probing or too personal on this board. No matter what I've asked, the people here have jumped to help me, and have responded with kindness and candor. I'm just so grateful for the UBPN community.

About the primary surgery, you can do a search for the word "primary" and tons of posts, old and new, will pop up. This way, you can learn about many families' experiences with the surgery.

Our daughter suffered a bilateral OBPI during her birth, and she had the primary surgery on her right side on January 25th. We were terrified. What if we made the wrong decision and her arm actually got worse?!!! It's a fear any loving parent is going to struggle with. After talking about it at length, my husband and I decided to go ahead with the surgery because the possibility of Aria's getting a more functional arm outweighed the risks of her getting worse. Whatever decision you make, feel secure that you are making it out of love, and with the information available to you right now.

Regarding the guilt - almost every parent here struggles with that, also. You are not alone. Sadly, I'm coming to believe the "guilt phase" is something we must all pass through. As many times as my husband, my family, and Aria's BPI specialists told me it wasn't my fault, I believed it was... until one day I started to realize it wasn't. I'm so sorry you are passing through this time - it truly is the most heartbreaking feeling... However, it does get better. And, you have found a community of people who have passed through it, also, and can really say (in truth) that it gets better.

Feel free to e-mail me personally anytime and with any question. Good luck in this decision, and congratulations on your baby girl.

mica