United Brachial Plexus Network, Inc.

THIS PAIN FROM THE PAST LIKE ME! THE PREASANT LIKE YOU! AND The NEW BORN WITH ERBS! WHERE DO WE GO WITH THIS!!! TOM

I will TEll you this I just wish Peolple Out here would get it. That If you have a qestion about ERBs FRom people would ask Qestions from people had ERBS FROM birth ware Doctors told parents and Kids that ERBS was a BIRTH DEFORMITE in the last 50 years and now ERBS is still happening Ill never get over that But I do now I can Help!! and will get help no doom and gloom just truth that will help you or your Child! If I cant Someone WILL!! Tom

Angela Butterfly, I am glad that you daughter has recovered so well, and I am really glad that she chose to do a college paper on the subject. It help to spread the awareness.
I have never been mad at my mom I understand that is what she had to do, now days it is all up to me to get it done, I set up a time in school that I can do my therapy cause there is never anybody home to help me, so I do therapy 5 times a week during school. I am on my own during the summer and have slacked a lot. Just get tired of doing therapy every day for 16 years.
If you ever hear back from Oprah on the subject let me know I would love to help make people aware, email me at hope16_05@yahoo.com.

Well let me know and I hope that every thing goes well.
Amy

I think it would be awesome if Oprah did a show on Erb's. When I was born (31 years ago), there was not medical help like there is today. You know my mom was over 36, I was her 5th child, was 3 weeks late, something should of went off in that doctors head. I weighed 10 pounds & was 21 1/2 inches. My mom is only 5'2".

She said they tied sheets around her stomach & would push on it trying to get me in the birth canal.

After everyone left the day I was born, they came in & told her something was wrong with my arm/shoulder. She had no one with her (back then the men couldn't stay in the rooms).

I don't feel sorry for myself, but my mom has always felt a since of guilt. I am now a mother & can relate to her feelings, but there was nothing she could of done. When your having a baby, your in the mercy of the hospital staff.

You know it is hard to describe how I feel. I would love to have given that doctor a piece of my mind, but he past away some time back. I would of loved to of known the feeling of holding my babies up in the air, putting up curtains, hanging pictures, being able to do my hair with out propping my leg on the bathroom counter, feeling like I was not being stared out, and many other things. I could go on forever.

I was scared that my babies where going to be born with Erb's too. I was 2 weeks late & they wanted me to go another week. I pitched a major fit. I said I am taking no chances on my baby boy having to deal with the same problems I have. Well, they admitted me to the hospital and after several hours of labor they finally did a c-section. My daughter they took 9 days early so she woudn't be so big.

Well, I didn't mean to babble. I just had a few things I wanted to say!

Take care,

Deanna

My younger brother was born by c section a month early, and he was 9 lbs 8 oz, 22 and 1/2 inches
My older sister was vaginal and 9lbs 4 oz they had problems with her you would think that they would have wanted to take me early or by c section, I was a day late and 9 lbs 6 oz.

My dr was not to bright I guess.

Amy

Hi Amy -- hope 16
I think I had the same not too bright doctor. Of course now my 3 are ages 22,20 & 19. All vaginal deliveries. My first was 3 days early 7# 11oz. My second 3 days late, 9# 2 oz and I was injured and hemoraged, received 2 units of blood. My third was 2 1/2 weeks overdue and 10# 8oz. He told me no problem. Of course there was and she had a severe LOBPI, effecting her entire torso, shoulder, arm, hand & fingers. The first doctor, Peoria at 7 days told me to take her home and do nothing. People told me to talk to a mom with a 10 year old spina bifada son. When I did she directed me to CMH, Chicago. The doctor there told me her nerves were avulsed and nothing could be done. I demanded Therapy and did it for years & years. She did respond and does well.

Amy, I told my 19 year old about you yesterday. She is in the process of moving and getting her computer hooked up. Busy with college and now will have a 60 mile drive (one way) too, don't know if she will write to you later or not. All 3 of mine are in college and I use my oldest's computer when she comes home for the summer. Won't be able to keep in touch much longer as she moves back out in mid August. What do you hope to do after high school?

EDUCATION Is WHAT Its all about! I belive no Doctor wants ERBS for a Baby but some way some how this has to go away . When I first just look up ERBS on the computer I prayed that I would find NOTHING!! When I did at 51 I Cryed this SOULD NOT BE HAPPENING STILL> but it is and I know how a parent and a child must fell because like so many like around when I was born there was no help at all! but the truth is WE want to help ITS just not me any more its ALL ABOUT HELP FOR THE INOCENT AND FOR THE PARENTS THAT HAVE TO DEAL WITH THE ERBS WE HAVE TO MAKE THIS GO AWAY!!! TOM

Dear Robbi
I am so sorry that this has happened to your neice, I think that many people who don't have a brachial plexus injury in their family just don't realise that the WHOLE family is affected by the baby's injury, not just the baby and it's parents. I am pleased that you are here learning more about Haleigh's injury - I am sure you will be a great comfort and help to her parents at this difficult time.
I did want to comment on the ultrasound issue.
I live in the UK and over here it is not routine to scan for the size of the baby after 36 weeks gestation for just this reason - it is almost imposssible to accurately gauge the size of the baby after this time, and in many cases can lead to just the sort of event you describe.

Tom, over here in the UK our group has worked for the past 5 years on educating Midwives ( who are the primary care giver in the delivery room) in methods of avoiding injuring these babies during delivery.
It is a long slow process and we are seeing some results, already in the past 5 years, more hospitals have introduced a protocol for dealing with shoulder dystocia in the delivery room - this is a major breakthrough, and we are also working with a pioneering Doctor on a more realistic training mannequin for use in hospitals.

I think that there is a great deal of work going on towards reducing the incidence rate of brachial plexus injuries, but it will be a long time before we see the benefits, and sadly, I honestly believe that we will never truly eradicate the condition completely.
The awareness work that the UBPN and other groups are constantly undertaking will bring about changes, but it will be a slow process - after all, all these hospitals and practitioners are hardly likely to leap up and say " hang on, you're absolutely right, we've been doing things wrong all these years"
It's much more likely to be a quiet acceptance of the information that we give them over a long period of time.
For people like me, a bit of a "bull in a china shop" type person, change can't come quickly enough, but as I get older I realise that as long as the change is for the better, then maybe the time scale is not quite as important.

I gave birth 9 weeks ago to a 10lb. 1oz. baby girl with ROBPI "Erbs Palsy". Its very frustrating when an ultrasound is performed and explain we can't be accurate give or take a pound or two. Its upsetting to know these injuries continue after so many years. We have the best hospitals in the Boston area and we haven't perfected the use of ultrasound technology to accurately detect the weight of our infants. I just don't understand. Imagine their first experience out of the womb should be tender and loving and our babies experience trauma and pain first hand. Had I heard of BPI going into labor and delivery I would have been more cautious and diligent about what I expected from child birth. Low and behold the expectant weight of my newborn was 8 lbs. 9 oz. My doctor knew this and the risk factor was never explained. We definitely need to speak out so we can lower the statistics 1 out of every 1000 births. That is 1 too many. Also, my doctor explained to me afterwards that 5% of gestational diabetes goes undetected. Nice! My tests all came back negative. I still don't know to this day if I had gestational diabetes. I suppose I'll never really know the true answer. I know for sure I'll never have another baby again. The trauma is too great. In closing, thank goodness for therapy.
Trish

Robbi -- thank you for caring so much about our family. It means a great deal and your support has been tremendous. We love you and hope this message board has been a great help in understanding Haleigh's injury. I'm so glad you were there to help us when we needed it most. We love you dearly! I can't say enough and thanking you can't explain or express the gratitude.
Hugs and kisses,
Trish