United Brachial Plexus Network, Inc.

Does anyone else have the problem of having a different opinion than the father? My husband and I have had so many disagreements over this. I take the baby who is 16 mos old with a right bpi since birth to the pt. I have done this since she was 3 mos old. He has only been able to go twice. I hear alot of incouraging things and discouraging things, but it seems that he doesnt want to believe it cannot be completely corrected. We have been on this board a few times since she was about 6 mos. old and it helps me feel better sometimes. I am feeling like surgery isnt right for her since the therapist said she is the best erbs case she has ever seen, even when they have had surgery. My husbands parrents feel she needs surgery and had us go to ucla which we did and they had five surgeons look at her all saying surgery wasnt an option. Now they found this web site and want her to go see dr. Nath. We live in So. Cal it is so far if not necessary. so now we are going to see a ped. neurosurgeon at Loma Linda on the 23rd. I feel if they say they will do surgery I dont want it. My husband will, though. So will his parrents. I think the five doctors at ucla should be some kind of way to judge our options on surgery. And I also feel if they say no surgery, my husband will want me to see dr Nath for another opinion. I may sound bad, but I dont trust doctors right now anyway. thats how she got hurt in the first place. What to do is the question? How do you decide which parrent is right? we both heve opinions on surgery, I am against it because it could injure her more, and leave a scar to deal with besides the erbs, He thinks we should have open options on surgery because she couls live with the scar, if the erbs was better. The erbs will never be all the way better though, and I dont think he feels that way. Of course I want her to be normal, I feel guilty every day that she was too big and got injured. But surgery seems too drastic when we have already been told she is quite well compared to others. Has anyone else had this problem? And do you ever worry about your child being teased at school? How do you get past your hang ups so the child feels as normal as possible? I feel so helpless and alone no one understands how this makes me feel every day when I see her struggle to use that arm. Jennifer

Hi Jennifer,

You may want to venture over to the general message board, that is where you will find most of the parents, most of us have been in your exact same position, struggling with many issues.

I took my son to Loma Linda years ago, I will email you privately about our experience. My mother-in-law was head ob/gyn nurse there for years, and she agreed with me that other options should be looked into. Thank God for her wisdom. I encourage you to get as many opinions on your child's injury as you need to feel absolutely comfortable. TCH obviously has a huge program and a good reputation, what do you have to lose by getting their opinion?

I know you are afraid of what the experts might tell you, but you cannot rely upon your therapist's viewpoint alone in this matter. You must see the specialists. I encourage you to put your own fear aside and find out everything you can for the sake of your child...gathering information is not the same thing as making decisions!

I hear the fear in your message, and I sympathize with you. But now is the time to be strong. Listen closely to what the EXPERTS say, and ask lots of questions.

Bridget

Jennifer,

I tried to email you but my email was returned. Please email me with a working email address and I will be happy to share our experience at Loma Linda with you.

Bridget

Jennifer - I'm sorry that you are so upset about all of this. Like Bridget told you - it's really important to gather as much information as possible. It would be good to get more opinions. And many of the doctors now accept video evaluations - including TCH and i believe, Dr. Waters in Boston.

Here is the information for sending a video to TCH
http://www.injurednewborn.com/maia/video.html. They will review and give you a call with their opinion.

Good luck and by the way - we have a wednesday night chat at 10 pm est...maybe you can make it and gather some support from us?

http://www.injurednewborn.com/chatroom.html

-francine