United Brachial Plexus Network, Inc.

I have noticed that an awful lot of you have either had surgery or your children have had surgery. I am wondering if is anyone out there who has not? The reason I ask is because since our daughter's injury seems to be mild, we are not really going to consider surgery for her. We are going to see the specialist at Akron Children's Hospital this coming up Friday, but we are basically just going because I want to get a better understanding of the extent of her injury. I guess I just want to hear from someone out there that they had a mild injury and got great results from PT alone.

Thanks so much, I'm a basketcase about all of this!!

my injury happened as an adult. but i have decided that i have enough of a recovery that i could manage with what i have. even though my hand is still considered non-functional because i have no strength or grip i can manage. if i have surgery, i might lose what i have. it is not worth the risk to me.

jmar wrote:my injury happened as an adult. but i have decided that i have enough of a recovery that i could manage with what i have. even though my hand is still considered non-functional because i have no strength or grip i can manage. if i have surgery, i might lose what i have. it is not worth the risk to me.

I agree about it not being worth the risk. For me it is terrifying to think of putting my 3 month old precious baby girl through surgery. What if something horrible happened and she didn't make it? How would I feel for risking her life when it really isn't necessary? Or what if she lost the use of that arm completely? Like I said, we think her injury is pretty mild, so we are not talking about a case where if we don't do surgery she will not be able to use her arm at all. I guess we will know more about the extent after our appt this Friday.

I am really sorry to hear about your injury, I can't even imagine what that must be like. Good luck to you!

If you don't mind me asking ....
What is your daughter able to do????
My doctor told me only like 10% of babies born with brachial plexus injuries DONT make a full recovery
It sounds to me your one of the very very very blessed parents....yay

Tuckersmommy wrote:If you don't mind me asking ....
What is your daughter able to do????
My doctor told me only like 10% of babies born with brachial plexus injuries DONT make a full recovery
It sounds to me your one of the very very very blessed parents....yay

I sure hope your doctor is right Did he mean that 90% heal, but need surgery to do so?

She is able to do a lot with her arm, but she has internal rotation issues. She can bring it up over her head, she can bend it, she can grasp with her hand, she can wave it around. But she does keep her hand pronated a lot, and that tends to limit how high she brings her arm up because you can't really raise your arm above 90 degrees with a pronated hand. So I know she is capable of pretty much every movement, but the question I guess is if she will be able to get her arm into a neutral position. She doesn't move the left arm as much as she does her "good" arm, and that also worries me a little. It just makes me so angry to think of everything she has had to go through already and she is just 3 months old today. Babies are supposed to spend the first 3 months being cuddled and snuggled and fed and loved. And we have done all of those things, but she has also been dragged to therapy twice a week since she was 13 days old. And we are constantly trying to work on her at home, so I feel like she can never just "be herself." She has had to work so hard already, and I fear that she maybe isn't as bonded to us as she should be because we are always demanding something of her. Does that sound crazy?

i have 6 people in my family (extended) that have severe birth defects (not bpi injuries) they were all taught to be who they are and to be themselves. they are fine. if you teach her the same life lessons as any other child she (and you) will be fine. if you look under the obstetrical bpi board there is a poem there called heavens very special child. i think it will make you think how wonderful your child (and you) really are. good luck to you

From what you state about the extent of her injuries I would not think she would be a candidate for surgery now. Once she is a little older they may opt for something to help with some of her limits. My daughter is 10 months and Dr. Kozin does/did not feel she was a candidate for the nerve transfer or any of the typical surgeries that the do at 12 months. My Daughter does not have any external rotation and can get her arm up to about 100 degrees and to her mouth. So from the sounds of things it sounds like your daughter is well on her way to a full recovery.

The statistic is 10% of children will not make a full recovery on there own (without surgery). Of those 10% who do not recover on there own, 10% of those who have surgery will not gain addition movement from the surgery. Don't quote me though.

Let me know if I can be of further assistance.

Marlene

My daughter is 7 now and didn't have surgery, because she wasn't a candidate. (If she was a candidate I would not have hesitated) I guess her injury was mild/moderate, I never asked Dr. Waters that question because there was always a steady improvement.

I remember when she was 3 months old and I would read these boards, I would wonder the same thing as you about recovery. I'm a really visual person, and not being able to see what other injuries looked like made things really confusing for me. These are some of my DD's benchmarks that I wrote down:
She first brought her hand to her mouth at 3 1/3 months, triceps started at 7 months, she could raise her hands up over her head at 10 months, supination started at 11 months.
At 3 years old Dr Waters felt she had 98% recovery.

I hear your concerns about bonding. I felt that I was more bonded beacuse of all the therapy/play that we did together, and I remember how joyful it would be for each little milestone to come, I hope you find that same joy.

best of luck to you,
Julie

There is a wonderful posting by a family whose daughter did not need surgery. I think if you search Femke you wll find the movie they made. Good Luck!!

Most people who stick around on these boards after their children are older, do so because their children were injured severely enough that the injury is still a big component of life years and decades later. That's not a choice, it is an unfortunate fact of life for some.

For quite a long time, it seemed that only the parents or more severely injured children ever even FOUND this site. In the past, many parents of children with very mild injuries never even learned the name of their children's temporary condition! We have had several parents whose 2nd or 3rd child was severely injured, and it was only THEN that they found out the name of that transient condition their first or second child had!! Now we have more educated parents and more parents coming here when their kids are still in the very early stages of a full recovery. I'm glad to see that the statistics seem to not be completely made up - that most kids really DO make a full recovery early on. I am very glad for those parents whose children were injured mildly enough that they can "graduate" from worrying about BPI and it's continued effects.

However... I would like to ask those of you whose children have such mild injuries to please try to be sensitive. Yes, surgery is a choice, but the need for surgery is something about which you have no choice... and certainly something NO ONE would ever choose willingly for their child, for no good reason. LydiasMommy, I hope you don't feel picked on by this. It's wonderful that you are not "considering" surgery for your child. Truly! But the reason you are not considering it is because obviously it would be a silly decision if your child is expected to make a full recovery without surgery. There is not a parent reading here who would not rather be in your shoes than struggling with the deciding on a surgery that MIGHT MAYBE give their child a chance at better movement and function. Chances are that if your child continues with her excellent recovery, your attention will eventually turn to other, more pressing matters, and you won't come around much anymore. You won't have the need. And that is completely normal. But that is why parents of children with mild, fully recoverable injuries don't tend to populate these boards. Why would they?

My child has "only" needed one surgery. Truthfully, he still "needs" another one... but so far the options to help with what he still lacks would risk too much of what he already has, or are still too new for us to consider for his level of limitations. Please count yourself lucky that your child had a mild enough injury that she expects full or nearly full recovery without any help. Any of us whose children have had surgery would have gladly chosen that scenario for our kids.

Kate