United Brachial Plexus Network

Hi everyone. It's been a while since I was here last.

I have a dd who was born 2 1/2 years ago and has a ROBPI. We haven't had any surgery to date (not my decision) but found out in the summer that she had a subluxed shoulder and had developed other issues in there because it had been "out" for quite a while (I guess 1 1/2 years).

Anyway, I just found out this morning that she'd benefit from the tendon transfer surgery. She's having it done in January!!! I'm also pregnant and due Feb. 5! Needless to say this is making me rather emotional!!!!!

I have been crying for about an hour now. I know that it's best and I trust the doctors in Edmonton but it's very scary!! I feel sorry for Avery - that she has to go through all this because it'll be uncomfortable but also that she has to go through it at all!!!

Any words of support or anything would be greatly appreciated at this moment! Apparently she will be in a "Statue of Liberty" splint for 3-6 months. I have no more knowledge than that.

Thank you.
I appreciate that we have this place to come. No one where I live knows anything.
Bonnie

Hi Bonnie. My name is Tanya, and I have a daughter named Amber (ROBPI) who just turned 2 years old. We are in a similar situation in that her shoulder is subluxed (confirmed with an MRI) and are in the process of having surgery (her first and only thus far) on December 6th at Shriner's Hopsital in Philadelphia. She will have the Anterior Capsule Release.

I have been firm in my decision to go ahead with this surgery for a while now (it took us from July to October to finally decide), but recently I've been having terrible days thinking about this upcoming surgery. I have found myself crying at the thought of her having surgery, the recovery, the cast and splint, and all the pain she must endure. It's overwhelming at times. I think it's the mother in all of us that worries about our children. If we didn't worry endlessly about all of this stuff, then I think THAT would be a little abnormal. It's our motherly instinct at work.

Keep this in mind, too. When you are pregnant, you can be very hormonal. It's not uncommon for me to talk with a patient on the phone (I'm a labor and delivery nurse and also triage phone calls) about things that they are crying over that are actually not a big deal to the average person, but it is a big deal to a pregnant woman. It's okay. It really is okay to be worried and cry. It's healthy to do this, otherwise you would drive yourself insane. Also, the baby growning inside you can feel your anxiety and fears, so it's good to express them so they are not bottled up inside.

I find myself looking at Amber and wishing this injury never occurred to her, but I cannot change that. I do know that I am working very diligently to make her life as easy as possible and healthy as possible to help her along with this injury. Know that you are doing the same since you are taking Avery to specialists, getting information, doing therapy, and making good decisions. Trust yourself. You know your child better than anyone else. Trust your instinct to help your child.

And remember, it's okay to cry because she was injured needlessly. Express yourself. Feel free to contact me if you'd like at my email.

It's tough, but know that you are supported by your family at UBPN.

Good luck. And by the way, congratulations on your pregnancy!

Tanya in NY

First off, you are not alone. Everyone here can help you.

Second, even when I thought I had it all together, another Juliana surgery would send me reeling back. She is five now, and I really think I can handle it now!! It is incredibly normal to feel this way. I know parents who freak over tube (in the ears) surgery and the recovery is "oh, johnny can hear now!!" and we have casts, splints, therapy...

Be confident in your decision. Know that you are doing the best for your child. And I always found that the time immobilized actually went faster than I thought it would.

And I agree with Tanya: congrats on the new baby!!! You will do just fine.

claudia