United Brachial Plexus Network, Inc.

Ryan's mom,
I am so sorry to hear about your baby's injury. Sadly, we ALL understand.
If I were you, I'd find a way to have the brachial-plexus center team at Texas Children's Hospital in Houston evaluate your child before going ahead with the surgery. They are greatly experienced and have been phenomenal for us ... and many others on this site, as you can tell.
Best to you and keep in touch,
Janet

Ryan's Mom,

I'm from CA and have seen Dr. Hentz. I've e-mailed you. I hope you get it.

Kari

Ryan's Mom,

I would recommend 2nd and even 3rd opinions. These are very big decisions.

Research all that you can and remember this board is only one resource.

Educate yourself and question each doctor in depth.

Best wishes to you. It is sure a difficult journey.

My granddaughter (lobpi) also could not move her shoulder or arm after birth, but she could hold our fingers if we put them in her hand. She had primary surgery at TCH when she was 5 months old and the mod quad surgery when she was a year old. Those surgeries combined with therapy, e-stim, and tes have done wonders for her, and now at the age of 21 months, she uses her left arm almost as much as she does her right arm. It seems amazing to us when we remember how her arm was at birth and for months afterward. She has come a long way, and we are so grateful for Dr. Nath and the bpi clinic at TCH. I would recommend getting a 2nd opinion at the bpi clinic at TCH since they have had such extensive experience with bpi injuries. Good luck!

Hi Ryan's mom,

A lot can happen in a month! I don't think you should feel pressured into any "quick" decisions, especially surgerical decisions. Have you found a good Pediatric Physical Therapist? I would get a second opinion and evaluation done first. If not, perhaps your pediatrician could recommend one.

To be encouraging, our son first just slightly lifted his arm just over 2 months of age. Before that he had no movement in his arm, it was limp. Now, at 18 mos. he has full and complete function without surgeries. Find a good PT for starters, if you haven't already! Our PT turned out to have better ideas than our neurologist : ) (And I just posted a message regarding summarizing what we went through with our child, in the last 18 mos.)

And, one other detail I noticed is that the surgeons and doctors we went to who were located within surgical facilities seemed to jump right to surgical procedures versus less invasive treatments like taping. Strangely, I found our PT the most valuable resource in this whole experience so far.

Monica

Monica,

Wow. I have to agree, many surgical centers jump right in to surgery (or surgeries should I say), however there are those that should jump into surgery and don't as well.

Sometimes I feel like as if we are all victims of the medical field again, or are at least very vulnerable depending on which specialist we happen to go to. We have turned down many surgeries and have chosen others. It has been an extremely difficult process, but we are very, very pleased that we took the road less traveled. Our child is having an amazing recovery.

Monica:
I also agree with your post b/c our daughter (2yrs old) had a wonderful recovery without surgery so far. It can happen, it just takes time. Ella could not move her arm until 2 months old (that was tiny movement). She did have finger and hand movement though. It took a while, but she progressed wonderfully with surgery. I cannot say how happy I am with my decision to agree with no nerve surgery for her. I think it also depends on the severity of the injury. Sometimes it is obvious if a child needs nerve surgery earlier than others. Since Ella was progressing non stop in her first several months of life we waited for more. I think some children have no progress or movement in the first few months and then of course surgery is highly likely and if that was Ella's case I probably would have wanted surgery. It's such a hard thing to decide. Forget the specialists and their opinions...it's all about what we feel is right. Of course we learn from them and get their opinions and I love Ella's specialist, but in the long run it really is the mom or the dad who know what's right for their child. Anyone was has to make this hard decision I wish you the best of luck. It takes a lot out of you for a long time. And yes, get more than one opinion...I am happy that we did!
~Krista~

oops..."She progressed wonderfully WITHOUT surgery."

sorry =)

Hi Ryan's Mom, I do feel that surgery is necessary in some cases, but I want to share my own experiences without surgery if that will help. My daughter is 11-1/2 years old, and has had no surgeries. Her arm and shoulder were completely limp at birth and for the first 3 months, but she had a strong grasp if you put something in her hand and had slight wrist movement. At about 4 months old she started to lift her arm by her shoulder and could get it about an inch off of the ground when she was laying on her back. Her bicep muscles started coming in slowly months later, but still today does not have 'normal' hand to mouth unless she sticks her elbow out to the side, and she has trouble supinating (turning her palm face up) without holding her arm against her side. I'm not sure if an early surgery could have helped her in those areas, but she is very functional and independant. Her progress came in slowly over the years and she can lift her arm past her shoulder by itself but not quite straight up. Her arms are both very, very strong now. She swims daily and I still see improvements in her function - almost 12 years later. I think that her finger function at birth gave us so much hope that her arm was "alive". She is doing great today - very athletic, very outgoing happy kid. It is so hard to know what the right decision is and no one knows for sure how much movement could come back on it's own. Please get as many opinions as you can - and go with what feels right in your heart for your son. I don't think that there is a 'wrong' decision because whatever you decide will be the right decision for your son.
I hope this helps,
Christy

What will work for one might not work for the next one.

Each and every child is different.

Every injury is different.

Each child recovers differently.

Each child heals differently.

Every result is different - whether surgery or not.

Each bpi specialist is different.

No matter how many people respond - and you may get 10 that say one thing and 10 that say the opposite - KNOW FOR SURE that you will NOT know how your child will heal and recover.

This is where faith comes in.

Do your research - ask the doctors lots of questions - read as much as you can. Follow logic and folow your heart.

Each parent makes the RIGHT decision for their own child.

ALWAYS.

No matter what it is.