United Brachial Plexus Network, Inc.

Hi there,

I'm a mum to a 13 wk old with a bpi, he was born 11lb 5oz and during borth got stuck, resulting in the injury .

I have been unable to find any support/awareness groups like this in Australia and there is only one Brachial Plexus clinic in the state that i live and we are still waiting for an appt....

Since birth we have been doing some stretches and he is seeing a chiropractor, he has gained some movement back in his hand, wrist and shoulder. However, our physio therapist has told us to "start thinking" about surgery.

I would love to hear if you have a child that has had surgery and how it went.

I would also love it if people have any web sites or ANY information, or the kind of stuff that the doc's don't tell you and that you find out by experience that might be useful, massage techniques, stretching, etc. please let me know - Thanks

Hi,

This is tuckers daddy we went through this with my son who is 16 months old now and when he was born we had no idea about bp
First off yahoo has a support group that is mostly based out of europe that might also help you out. My son has had the surgery the surgeon had to graft two nerves into his neck so he was in a body cast for about 6 month(if you decide to do the surgery I have some tips that might help you with keeping your child calm) we were very scared the doctor told us that there is a chance that with the surgery it could damage him more.but the surgery went well he can now bring his arm up about 90degrees has full function of his fingers wrist and elbow still working on the shoulder but it is much better then before . are you seeing a neuroligist? After about three months if your child hasn't made a full recovery you need to see a erbs palsy specialist. We were lucky to have a specialist about 4hours away in Miami. Very good very experienced doctor.
If you want to think about surgery you should speak to a specialist soon because they don't like to operate after one year old. If you have anymore questions you can email me at rawright22@yahoo.com
Thanks,
Roy

Hi,

I am in Australia as well and I tried to send you a email message but im not sure if it worked or not?

Please feel free to contact me.

Brett@directinject.com.au

Hey,
I'm also in Australia, my son is just about 18 months old now and had a ROBPI, he had the nerve graft surgery at 3 months old exactly. We were told that the surgery is best done between 3 and 6 months of age. He had no movement whatsoever in his arm, slight finger movement only.
We are in w.a so he had surgery at princess margaret hospital. It took 6 or 7 hours and he has a sling on, bandages, a drain going through the bandages to the cut in his neck/shoulder, a catheter and other cords and stuff attached. It was horrible to see but we just kept in mind that it was the best chance for him to get some use out of his arm. The surgeons said that 3 of his nerves were torn and had scar tissue on the ends so without this surgery he would not have gained any further movement.
He was in hospital for 3 nights, on morphine drip the first night or two, then jus strong painkillers. He was all bandaged up for 4 weeks, then in a sling for another 2 weeks. His scars on his neck and legs are hardly noticeable now, they have faded so well.
5 months after surgery, he was laying on the rug on his back and bent his arm at the elbow to bring his hang up. I cant even explain how happy and excited we were lol its now been a year and 2 months since his surgery and he holds things in his right hand, tucks things under his arm, can carry light things with his right arm and has just started to get his hand into his mouth whilst standing.
I hope this helps you come to a decision. All the injuries are different and my son had no improvement at all from birth until 5 months after surgery but even though it is hard to see such a little baby go through surgery, it was for the best in the end. If you want me to email you any photos of him whilst in hospital after surgery and his arm now and the movement he has gained i would be happy to, it might help you to deal with it better or come to a decision if u see what happens. My email is marshmello_007001@hotmail.com

Hi, I am also an aussie Mum, my son is 21 weeks and has LBPI. I have been told he needs surgery and will be getting it done within the month. It is truly a terrifying time. He started getting movement back at 12 weeks after visiting a chiro, but he has learnt to compensate very well and is not using his bicep at all. There is a real lack of support in Australia, even the doctors seem vague, but this website has been a huge blessing and is loaded with information. I hope all is going well for you guys. Please feel free to email me siobhanhall@hotmail.com

Hi there,

I am so sorry to hear about your little ones getting injured and wish for excellent recovery. I am wondering if anyone here is from Perth, where my son was born.

Sema