United Brachial Plexus Network, Inc.

hello. Sorry you had to find this site but glad you did. If you are in California there is a service called California Childrens Services (ccs) that will cover physical therapy and all other medical expenses. If you are not from ca you should see if your state has any simular programs.
Joseph's mama. 21 months lobpi

Mamaoftwo, are you by any chance from Kansas City? I am, and I work at Children's Mercy. I have a granddaughter with a left brachial plexus injury also. I would talk to you - Camille B.

Alanna,

I am in St. Louis. Sorry to hear about your granddaughter. How old is she?

Hello Mamooftwo:

I am reading your story and it brings back the pain of what my husband and I went through almost nine years ago when this happened to our daughter.

Like you, we did not want to sue the physician but felt we had no choice when we realized how costly the surgeries/therapy sessions are.

My daughter's head had delivered, however, her shoulders were stuck under my pelvic bone. Instead of doing an emergency C-section, the doctor told us that she was stuck and that he was going to have to "force her out." He proceeded by pulling forcefully on her head causing an avulsion of the nerve from her spinal cord. In addition, there were several other nerves that were damaged by his actions. She suffered global paralysis and we were told by many of the top Pediatric Neurosurgeons in NYC that she would never be able to use her arm and would have "crude animal like movements". We did not expect to hear this but were fortunate enough to be referred to an excellent surgeon, Dr. John Grossman.

Dr. Grossman has done wonders for my daughter and if you saw her now, you would not be able to tell that she was so severely injured. Prior to being treated by Dr. Grossman, my daughter had no feeling in the arm and could not move/use it. She has undegone four surgeries so far, all performed by Dr. Grossman and now makes a conscious effort to use the arm and she now has feeling in the arm . Patients come from all over the country to see Dr. Grossman and he recently launched his brachial plexus program at Hospital for Joint Diseases in NYC. We initially used to travel to Miami for the surgeries. You can visit Dr. Grossman's website at www.handandnervespecialist.com to learn more about his program. I highly recommend him.

We sued the doctor that injured our daughter in NJ and lost the case. Of course, he lied about what happened in the delivery room and the nurse covered up for him. Our case was tried in a wealthy county in NJ where people believe that insurance is high because frivolous law suits are brought against doctors. They really were biased and statistics show that most of the cases that go to trial in that county are won by the doctors. Even though we lost, however, the doctor's attorney arranged for my daughter to receive some money, which we have put in a trust fund. In my opinion, that was hush money. If it did not take so much time and energy, we would have appealed. However, we did not want to risk losing the money that was given to her.

Each time that my daughter undergoes surgery, it brings back the pain of what this doctor did to her. We are stuck with all the expenses of caring for her, while he goes on with his practice. It should be against the law for doctors to injure people and lie about it.

I wish you all the best and if you would like to email me, you can do so. My email address is desireeashby@yahoo.com.

Good luck to you and your family. I hope your baby boy can have the same successful recovery as my daughter.

Dear Mamaoftwo:
I am the parent of four kids, Juliana, who is LOBPI, is my fourth. She has a severe injury and had surgery at 4.5 months old. Although it was quite frightening at the time, I am glad we did nerve grafting so early. I think her recovery has much to do with the early time frame. She had no movement from her shoulder to her fingers. She was stretched at c-4, ruptured at c-5, c-6, avulsed at c-7. c-8 was so "deep" that they chose not to touch it. She had "modquad" at 14.5 months old and biceps lengthening at 39 months old.
Juliana is now 8 1/2 years old (we had half a cake for her half birthday!) and a happy, well-adjusted, great kid. She suffers from major sensory issues, but we are dealing with that well. She didn't really speak until kindergarten and even then she had to be goated into speaking. By second grade she was on par with her classmates.
We did tons of therapy. OT, PT, aquatherapy, horseback riding therapy, play therapy. I did not, however, range her at every diaper change. THAT would have made me nuttier than I was!!!!
She has hand function (we never thought she would), poor elbow function (we hoped for better), and usable shoulder function. All in all, she is quite functional. There is a lot of compensation, but she gets the job done.
She swims, does gymnastics and is turning into quite the tennis player. She went away to sleepaway camp last summer and is off again this summer.

Get more than one opinion...
if you want to email me, you can.
good luck,
claudia
claudia@ubpn.org

my son had surgery at 5 1/2 months! he also had quite a few nerves damaged. He had C6-C8 and T1 totally avulsed, the others were not able to be seen, in other words, they imagined that those were also avulsed. He had absolutely NO MOVEMENT IN HIS LEFT ARM.

Now it is a completely different kid after surgery!
check out a few videos i took of him before and after the surgery
Before (5 1/2) months old
http://www.youtube.com/watch?v=wN1D--opzWY
After (11 1/2 months old)
http://www.youtube.com/watch?v=KB44HqyAGE4

We also did as much therapy as we could EVERY DIAPER CHANGE FOR A LONG TIME!!! Now we do it after bath time while putting on lotion, we make it a game! this is your arm, you can lift it over your head and mommy tickles your armpit, or lift it up and touch your hair, see how soft that is!

We also had many many many resources, We have several family friends who were PTs or OTs, who helped us for free on a lot of occasions. I am so blessed to have had their input so early.
The main thing that they said to do was, WHATEVER THE NON AFFECTED HAND IS DOING, HELP THE AFFECTED HAND TO DO AT THE SAME TIME. GET LOTS OF DIFFERENT TEXTURED ITEMS AND HAVE THE CHILD FEEL IT WITH BOTH HANDS. (TEXTURED ITEMS CAN BE FURRY, SOFT, ROUGH LIKE SANDPAPER, SMOOTH, COLD, WARM, WET, DRY, RUBBERY, BUMPY, ETC...)
Hope that helps with therapy

I'm not new to the boards, but had to change my username because of my lawsuit (defense attorney wants copies of all my postings...so much for privacy!) Anyway, I'm surprised no one has mentioned an MRI or an EMG before doing surgery. My daughter had no movement in her shoulder or bicep, just some slight movement in her fingers. She had the typical "waiter's tip" position going on too. She finally had some movement in her arm at 4 months. She started to make better progress when she turned about 1, but still had residual effects. She did not have surgery until she was 2 years 2 months. We went to Shriners to have the surgery done for many reasons (one of which was cost). As I mentioned, we do have a lawsuit against the doctor, which I filed when my daughter was almost 1. I decided to wait because I wanted to focus solely on her therapy and well being...I knew thinking about a lawsuit would be too stressful for me at that time. Also, I wanted to see what her recovery would be.
Good luck...there is a wealth of information on this site from parents who have been through everything that you are going through now.

My2girls,

Are you currently still going through the lawsuit or was it settled?

We are scheduled for a MRI and CAT scan on Thursday. Our specialist is still waiting until he turns 3 months to make the final determination. We have another appointment in 2 weeks. My son is making slight progress, which is great to see.

dear momof2

I hope this finds u well and in high spirit

My son had same symptoms like your at 9weeks.

He will be 3month old on 21st this month and his wrist starting to turn towards his body, he just started gaining function in his arm and seem to be progressing well. Not bending his elbow yet but he moves his shoulder now

Unfortunately am not in US, am in Africa and there are no good specialist here, I just use my two sense n what i learn online about his injury, i just do infant range motions and wish i did more than I do but I have 3other little ones under 6years. |Am looking to move to US in July then i will look for specialist, both my son n father are US citizens.

MOMof2...i read somewhere they say movement of shoulder is a good sign., she might recover. Sometimes the doctors can be wrong. They are just guessing from what they see.

I hope she recovers on her own. My son for some reason i have noticed , is recovering from up to down...he started with his shoulder and seems to get stronger going down from shoulder. His wrist is getting so much better too.

Love, P.

Ayoubs mom,

Thank you for your encouragement. I wish that I could take some of the testimonies here and just know for sure that my son will recover without the surgery. Brachial Plexus injuries are so complex! I wish we could just say by looking at our babies that "oh, that nerve is just stretched and not pulled and the other ones will just need a little more time too!" Unfortunately that is not the case. This has definitely built my faith. This can be overlwhelming if I let it be. I look for new movements all day..hoping to see just a flicker here or there. We did have our appointment yesterday and our specialist wants to do the surgery in 2 weeks if no improvement is made. I have talked to some of the wonderful moms through email that have been through it and they have been a tremendous comfort. My son is strong in some parts of his arm, but no movement in others, which makes the doctor believe those nerves are torn. I want to get the word out about Brachial Plexus Injuries. There was a mom there at the center that had a 1 month old and was told from the beginning that he would be fine, that he would improve on his own. I didn't have a chance to talk with her, but I hope she finds this board.