Hello, I'm new here

[Missy]

Hi Dena.

You've found an amazing place! Our son Mitchell is 7 years old and has a ROBPI.

You'll find a lot of information here and on Francine's website.

Good luck to you!
Missy

[sharlon]

hello i am sorry to hear that you were given bad information. we were told that our baby would recover naturally and to give it a year, blah blah blah... the reason for this information (i believe) is that if you do not have primary surgery which is the nerve graft withen 12 months of the injury the muscles will not accept the new nerve supply. hence no primary surgery. primary surgery is the only way to determine the cause and the extent of the injury. thereby putting the dr and hospital who injured the baby to be in better standing should there be a legal case. all i can say is it is sick and makes my flesh crawl. they will throw our children under the bus to cover themselves. in my personal experience find someone that you think has your child's best intrest at heart and ask questions. they may be willing to tell you the truth if you ask the right questions. good luck and don't blame yourself i for one had never heard of this injury before my child was born and didn't have a clue.

[Glenis]

Hi, my daughter is 8 years old now and was diagnosed with Erbs palsy at birth. A pt came to see me on the ward and showed me some exercises to do and arranged to visit us at home a few weeks later, the paediatrician told me it occured in 1 in 100 babies and would recover in "about 6 weeks", and a midwife told me the arm had gone to sleep because the baby was squashed inside me. I left the hospital feeling as guilty as sin and none the wiser. I asked the community midwife about it and she assured me she would bring loads of information about Erbs at her next visit. I never saw her again. For the next 3 years we had regular physio at the hospital and 6 monthly visits to the consultant paediatrician. When Shannah was 3 years old I discovered there was an Erbs palsy support group whose headquarters were less than 10 miles away. I told all the professionals involved with Shannah about the group but they didn't seem interested, and a few weeks later she was discharged. Shannah's rom to me was pretty good and she was able to do anything she set her mind to. Rode a bike (without stabilisers) at 5 years, danced, did gymnastics and was able to tackle any playground equipment, so all in all things were good. My friends at the support group encouraged me to get Shannah referred to a surgeon, but I didn't see the need, however following my divorce and move nearer to my parents (and one of these surgeons) I got her referred. I honestly thought he would say I was wasting his time, so was quite surprised when he ordered x-rays and asked to see her again 6 weeks later. The x-rays showed a degree of dislocation and an abnormally large coracoid bone. She was put on the waiting list as a priority case for a coracoidectomy and botox injection. Unfortunately, over here, priority means nothing, and it was 18 months before she had the surgery. By this time she was in alot of pain at the shoulder. Anyway the surgery took place last September, she's not in pain anymore but her rom hasn't improved as much as the surgeon or pt's hoped, we visit the surgeon again next week to discuss a muscle transfer. As I said before, Shannah is 8 years old now. I wish I'd gone for the referral when she was younger and less aware of what was happening to her.

[Tracey]

Hello and sorry to hear about your unfortunate situation. My daughter is 8 months old with right bpi; at birth. The doctors told me the same thing and I am lucky that my daughter was transferred to NICU or I wouldn't have known what to do. I live in Texas, but am not going through Texas Childrens Hospital. I don't know if your name suggests this, but I have 3 kids also. If you would like to chat sometime email me at littleones26@yahoo.com. There is hope for your son. Faith does the trick around here. Take care and hope to hear from you soon!