United Brachial Plexus Network, Inc.

I'm new here, so I would like to say hi to everyone. Coming across this site is a true blessing for I have been crying on and off since my son Makai's birth 6/05. I was so devastated by his injury because I predicted to my husband that Makai would be injurd due to him being a large baby. I begged the Dr.'s to induce me or c-section me to prevent any harm to my baby. They of course blew me off and were very condescending towards me. I guess I had mother's intuition even while Makai was in-utero.
I am angry and my husband and I just recenly started marriage counseling. This injury and the stress realted to it has put a strain on our marriage. My husband works about 25 hours of overtime to pay for all the co pays for PT. Makai is going on 3 months old and he has improved. Movement usually happens when lying down on his back or on his right side. Early this week, I woke up at 3 am a just cried until about 4 am for my baby Makai. Today I made an appointment with the Dr. that delivered Makai. I stated that IIIIII needed him to explain to me what happened during the delivery and how and why this wasn't prevented. Why didn't he re positioned Makai?

Thanks for letting me vent.

Oh yeah.. can someone fill me in on what ROBPI, LOBPI and MOD QUAD means...

thanks...

Welcome to these boards but I am so sorry that you have joined us due to a BP injury. Do you live in the USA? If so, every state has a free Early INtervention PT/OT program birth to 3 years old so you would not have copays. Is your baby being evaluated by a BP specialist? If not, many BP specialists will evaluate and give you their opinion via video tape.It is imperative that not just any Doc but a BP specialty Doc evaluate your baby because in severe cases, time is of the essence. We are all here for you so do not be shy in asking questions. Lou

ROBPI = Right Obstetrical Brachial Plexus Injury, LOBPI is Left..., MOD QUAD is a type of surgery done to improve function.
Good Luck to you and your family.
Marieke (LOBPI age 29)

Michele- I sent you an email.



Marlyn

marlyncma@hotmail.com

http://www.nichcy.org is the place you can go to look up what office to call in your state for Early Intervention. Some states do provide free therapy and some do not but provide other services. Every state is different. Find out what your state has to offer.
I'm truly sorry you are in so much emotional pain now. I know exactly how you feel. I hope your Makai makes a good recovery.

We contacted EI when Makai was about 4 days old. A case manager came over a said that he wouldn't qualify until he was 3 months. I caleed her early his week and she said he would not qualify unless his erbs palsy was severe, being that he has movement the chances are next to none that he will get EI's help. Sometime about a 33-25% delay.

Makai has LOBPI and we live in NY state.

Get your pediatrician to write a medical necessity note for your son. That will usually do the trick. My daughter's first visit with EI was at 2-3 weeks old. Just make sure you say Erb's Palsy and not brachial plexus.

Hope this helps

Nicole - Tayasmom (forgot to log in}

Congratulations on your new baby. I too am a new mother to a wonderful little girl (5 months ) with ROBPI. It is definately a roller coaster of emotions you feel after you are told the child you've been carrying for 9 months has just been injured due to a doctors mistake!! The first few months I cried every day, then my husband finally sat me down and told me my daughter needed me to be strong. I have learned to put my own guilt, anger, frustration and depression behind me and do everything in my power to learn more about this injury and help her in every way I can. I'm not going to say it gets easier (I still cry) but I've learned to put my emotions to work for the betterment of our daughter. We were also turned down by EI and there are no PT's/OT in our area. My daughter recieves OT only when we go to the brachial plexus clinic (4 hours away). Remember to take time for yourself, Makai needs you to be strong. No matter how tough times get, Makai is going to be great!
Love and Prayers...................Tara (mom to Ava ROBPI)