United Brachial Plexus Network, Inc.

Surgery is such a hard decision. One of the most important reasons why is b/c our children cannot make their own choices about this. Did we make the right decision? Would the child want us to say yes to a surgery? Would the child want us to decline a surgery? I thought about all of these things when we were on the whole surgery thing. My daughter did have one surgery at the age of 2 yrs and 4 mos old. I am happy with the decision we made. It wasn't too hard to agree with the recommendation b/c she had a dislocated shoulder and needed that fixed. Would I consider another surgery at this time? Probably not. Why not? Well, she is 5 years old now and the surgeries that may be recommended for her can be done later on. It isn't like there is a time line where the surgery can no longer help her problems. I think at this point her first surgery gave her a lot and she is doing okay today. From here on out, unless it is something medically necessary, it will be her decision. Does that sound bad? Who knows...maybe I will even change my mind about that in a few days! This is just how I feel at the moment! Surgery is a hard step to take. Anyone who is in the process of making that decision now, good luck!
~Krista~

We are in nearly the exact same position. My daughter is eight and had surgeries at 7 months and 2 years. We don't regret those surgeries in the slightest. She now has a very slight bicep contracture and she is beginning to tighten up again in the shoulder area and the surgeon recommends a bicep release and revisit of the mod quad.

My husband and I decided that we would leave any surgical decisions up to her at this point. She was and continues to be adamantly opposed to surgery. Whenever she brings up her bicep issues (her arm hangs slightly shorter than the other arm) we remind her that surgery is an option. We also provide her with other options, include bracing, etc. She always chooses the alternative to surgery.

Someday she may change her mind and if and when that happens we will support her wholeheartedly. If I truly felt the surgery would make a big difference I might pressure her more but the surgeon says it is not a permanent solution. And as we've learned her mod quad doesn't seem to be a permanent solution either, which frustrates me -- particularly since we have been diligent with our therapy and stretching. (However, we DO NOT regret the mod quad -- the results were astounding for her at the time and I wonder where she would be now without it.)

One thing I've really had to fight against is jumping in immediately with whatever "new" thing comes along. In those first months, it is imperative that you act quickly and receive some type of treatment and thus my mindset was trained to quickly act. Now, I try to discern what will truly help my daughter and what is only a band-aid that will provide a quick fix and may not provide long-term benefits and worse case, may injure my daughter's emotional well being.

Please know that deciding to have surgery for your child is not wrong and this is merely our family plan. We may regret it someday when she turns 13 and attacks us for not making her have surgery Only time will tell...

KWest,
I certainly concur/agree with your statement about making your daughter's emotional well-being a priority. Don't stress-out about later, because the very fact you are giving your daughter the power to decide, she will never blame or second guess your choices that you made in the past. Our Emotional Well-Being as adults with OBPI, is of vital importance...it is one of the "Invisible Secondary Medical Issues" as an Adult with OBPI, if it has been neglected or pushed aside in a continual manner.
FYI,this has been stated in the Medical Resources Link "Medical Issues of Adults with OBPI".

HUGS all around,
Carolyn J
LOBPI,68

I know this is actually an old message.

But, I find it interesting to see the different opinions. My son, 7 lobpi, has had 3 sx's so far. Last summer he was recommended to have forearm osteotomy, tendon transfer on wrist and clean up of mod quad. He immediately started crying when the word surgery came up again.

We agonized over it and every time it was brought up, he cried or ran into another room. One day when I was trying to talk about the things he could do vs what he couldnt do and how surgery might help,I told him that I understood what the 7 y/o Corey was saying but wondered what the 16, 17 18 y/o Corey would say? Would he be mad or upset with Mommy and Daddy because we didnt get surgery for him? He looked at me with the sweetest face and said, "Mommy, I PROMISE I wont be mad at you."

That right there made me pause and truly 'want' to give the control to him. We are still considering the options but have put them on the backburner, for now. Hearing these other opinions has helped me even more. I just wanted to say 'thanks'

I don't know how to say this other than to just say it, but it sounds like you are just not happy with the plan of care of your son. If that's the case, then maybe you need to seek another avenue of care would be my suggestion.

I don't feel like there is always another surgery for children with BPI. Our daughter has only had one surgery, and it was only because her shoulder was subluxed, so we were sort of between a rock and a hard place. Even with that situation presented to us, we consulted 3 doctors, and took a number or months to research the possible plans of care and feel we made the best decision for her. Sometimes you just need to get another perspective.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

I think a lot of psychological harm (to the family - the child AND the parents) can come from the continued quest to "fix" the child's arm. Nothing is going to give back what your child had in utero. No one is going to be able to restore completely what was taken away. And especially nothing is going to erase the memory of that delivery - the pain, the betrayal, the lies. The most important thing to do is grieve that loss and that pain. Only then you can move on to making rational decisions based on what is NOW.

I've been very very lucky to have some great conversations with parents who have adopted children with this injury (and other disabilities, as well). Their approach and attitude is just so completely different on so many levels, mainly because of the lack of guilt, anger and sense of loss. For most of these parents I know, the only reason their child was even available for them to adopt was this injury. That puts it in a different light completely, doesn't it? And when there is no guilt, no grief, no blame over what was "lost", no feelings of what "should have been" decisions are easier. Will this surgery be worth the risk (to health and function)? What will we gain? Those simple questions and and their answers lose much of their heartwrending power.

When our son was about 4 months old (he is turning three next month) I met my first BPI adoptive parent. I immediately realized I needed to separate his injury from what happened at his birth. Our conversation made me realize my grief over the delivery didn't benefit him. I had to deal with my feelings of being traumatized and betrayed, but that was my burden, not his. This is HIS life, he knows nothing else, he mourns nothing. It makes no difference to him if this should have happened or not. It just did. My feelings and self-flaggelation over not protecting "my baby" were paralyzing me and not letting me move on with the business of dealing with his injury.

One day I asked myself if my decisions and my thoughts about his arm would be different if we had gotten into a car accident (with no one at fault) on the way home from the hospital (well, he was born at home but we could have gone to the hospital and gotten into a car accident...) Would my attitude and my feelings about his arm be different?

I realized that a GREAT MANY things would be completely different. But primarily, I realized I wouldn't feel so frantic to get him "fixed". Yes, I would want what was best for him but I think the guilt and grief I felt lent much greater value to having a perfect arm and my fears if it wasn't, and less value to how he thought about his arm, what the risks of surgery were, etc. Making surgical decisions is always a gamble, and my feelings about his traumatic birth gave made a perfect arm the ultimate "jackpot". Once I accepted that his arm would never be perfect and the past would never be rewritten, it was easier to move forward and ask myself "is this good enough? what are the chances x/y/z could make things better? is it worth it? what are the risks and drawbacks? is it worth it to wait?" with a clear conscience and a peaceful mind.

What if you were an adoptive parent, who only had the privilege of your child because they had this injury? Imagine what it would be like to be thankful to this injury, in a way, for giving you this amazing blessed child you have. Wouldn't that be incredible?

But in the end, isn't that actually true for all of us? This injury, for better and for worse, is a part of each and every one of them.

None of this means don't do the best for your child, whether that be therapy, surgery, estim, botox... the list is long. And if anything I said is interpreted as "this is how it should be done" I don't mean it that way. This is a way of thinking about Joshua's injury which has brought me great peace, and I feel blessed by it. I was a wreck when he was born, and anything I can do to share this feeling... I want to try. Because I truly believe that making peace with this injury WILL make it easier to make those terrible and difficult decisions for your child, and will make it easier to be at peace with your decisions. It will help you recognize and accept when it is time say "it is enough".

Kate

Excellent post Kate. You brought me to tears...

Dear Kwest
Your child will not hate you or attack you for doing what you felt was the best for her. She will know that you loved her the best way you knew how. I've been where you are now spending years wondering and crying about whether I made the right choices for Frankie after 3 sugeries by the age of 5 he wanted no more and would cry at the mention of seeing another doctor or therapist so we stopped. He always told me he was happy the way god made him. At 13 he asked to see if there was anything that could be done to improve his function he has a LBPI no real use at all. so we saw Dr Nath and Frankie made the choice to have the mod quad 3 months later he goes to therapy willingly and works hard at home doing OT/PT but it was his choice. I always told him he couldn't hate me for letting him choose to wait and he promised he wouldn't and he always tells me he was happy to have the right to make decisions about his body since he was the one going through it all. i hope this helps you find peace with what ever you decide to do. Mare

Kind of going off of what Mare said...

From the "childs" (I am not really a child any more, rather I am almost 20 years old) point of view, I do noth think that we would ever hate our parents for not forcing us to have surgery. We know that as parents you do that best you can with what you have. I personally have been able to say yes or no to all of my surgeries since nerve grafting wasnt an option almost 20 years ago. My first surgery was at age 6 (well almost 7, it was a little over a week before I turned 7) But I had chosen at age 5 to have that surgery. I got sick the first time and had to have it rescheduled. Back then we were on waiting lists as long as a year.
Anyway the point is that I have gotten to choose every one of my surgeries and always had the right to say no. I never regret my parents not pushing me. I actually love that they respected my opinion enough to give me the choice! If my parents had puushed me as a child would I have any better function, who know! What I do know is that they loved me and still do! Never ever would I consider blameing my parents for the function I done have. My injury is a part of me and I wouldn't have it any other way! It is part of what makes me special.
If you want a comparison maybe think about if your child had bad eyes, would you ever force them to have lasik eye surgery if they refused it? Its something to think about. The results could go either way just as any other surgery out there. We may never know the individual results but some things we do and some we dont. Ultimately, I think the surgeries should be put into the childs hands. THey will thank you for respecting them enough to let them choose!

I hope that helps,
Amy 19 years old ROBPI

ps, Kate thanks for sharing your perspective! I hope that helps many parents. After 20 years to know that my parents are still in pain over my injury really bothers me! I want them to be happy! I am and they should be to, its not their fault!

Hope, as always, you give a very enlightening perspective. You were definitely appropriately named. Thanks