United Brachial Plexus Network, Inc.

Hi sema.
we battled this dilema about 2 years ago and then again 4 months ago. our story ... short version.
born... OBPI, 4 months went to Childrens Memorial Hospital (chicago), then to Childrens hospital of Wisconsin then to University of Wisconsin Childrens Hospital and then evaluations with TCH. 2 of the 3 mentioned previous told me that TCH will just cut into anyone b/c they like to "study". against the advice we went down there.
Jared was 5 months old. Dr laurent and about 5 other doctors studied and I do mean STUDIED him. They considered everything. They actually included us in on the decisions! WOW! that was a first! 2 hours and 45 minutes they decided to put it off and to watch what happened over the next 2 months. (and by 2 hrs 24 min... not waiting.. this was time spent with jared, playing and watching!) GOOD CALL on thier part. 1.5 months later jared did hand to mouth!!
we thought we were done...
this summer dr. nath did and eval. mod quad October 27th. all went well. got home... i was terrified that i made the biggest mistake ever!!! i cried everyday (not all day long)for about 1 month. 2 weeks after splint came off....
MIRACLES MIRACLE MIRACLES!! it was if dr. nath lifted off a 50 pound weight off of my sons shoulder and now... well now.. i thank God that I did what i did and i'd do it 50 times over!
i am now excited to see what is next... it looks like we may be in for another in april or may..

but as all this info is flown at you Sema, please PLEASE remember that each child is an individual and what might be right for us or timmy or sue, may not be right for evan.
meet with TCH.. decide for yourself. you can always choose not to go through with it.
BEST OF LUCK TO YOU!

We also declined the bicep tendon lengthening with Nath, which he wanted to do along with the mod quad. Our dd's contracture was only 5 or so percent as well. We talked to a lot of surgeons and therapists about the pros and cons to both surgeries and we went ahead with the Mod Quad only, after post-poning it 6 months from it's original surgery date. When we saw him a year post surgery at a picnic, he recommended no more surgery (including a "no" recommendation on the bicep tendon surgery). It is all so individual to the child, and the resources you have available. There is never a "right" solution with this injury, just the best solution for your situation.

Lisa D

Your post is very timely as we have just had our second consultation with Dr. Hentz at Stanford, and he is recomending Primary surgury for our now 3 month old for next month. We are going to fly to TCH later this month for a consult to get our second opinion. Like you, I live in Northern California and would, due to convenience, like to use Stanford. However, I will of course base my decision, solely on where I feel Ryan will get the best treatment. This is soooooo scarey as parents, and making these decisions are not easy. Everyone's responses have been quite helpful, and I as well, would appreciate any feedback reqarding both Hentz from Stanford and Laurent (who will most likely perform the primary at TCH). Thanks for your post and God bless you and your little Evan!!!
ps. If we do choose TCH, how many post surgery followup trips do we need to make? I'm concerned that may play a major factor in my decision.

It's been easier following up with TCH then it is to follow up with my pediatrican that is 15 minutes away. Sometimes it's even easier traveling there too with the traffic lately!! lol

They connect through email, phone calls, videos and gatherings around the country. Air fare is free to get there so going there is easy, too. Laurent is well worth the trip as you will see when you meet him and the team.