Anger Survey (about bpi)

[francine]

On top of everyone's list, I want to add these:

(1) I am angry at doctors who call themselves brachial plexus specialists that are clueless - are not informed on why a multidisciplinary team is important for the treatment of a child who has a brachial plexus injury.

(2) I am angry at doctors at our local #1 rated childrens hospital that tell mothers that these injuries happen in utero without even knowing what the child's injury is.

(3) I am angry at doctors that say that 'nothing can be done' - they are completely uninformed about the surgeries that are done around the nation or they choose to not educate the parents about it so that it can be further swept under the rug.

(4) I am angry at all doctors that sweep this under the rug.

(5) I am angry at how doctors are protected by their fellow doctors so that this injury happens over and over and over and over with no consequences to the doctors.

(6) I am angry at how there are no consequences (in terms of medical license) for doctors who injure children.

(7) I am angry at how therapists tell parents what to do as though they know better then the brachial plexus specialists /surgeons... even in terms of what they 'think' the extent of the injury is.

(8) I am angry at the four therapists who could not assess a dislocation in over a year of therapy! (what's THAT about??)

(9) I am angry at how the insurance companies work in terms of always needing positive progress - what about children who constantly step backwards? Are they not entited to therapy too?

(10) I am angry that insurance companies don't understand that these injuries are LIFETIME injuries.

(11) I am angry that "eye for an eye" is unacceptable.

There will be more coming....
-francine

[francine]

I am angry that I was not educated -by anyone- about the risk factors and therefore lost my chance to have a choice of how much risk I wanted to take on the birth of my baby.

I am angry that this is not written up in any of the childbirth education texts we read.

I am angry that it is not even taught in childbirth education classes or doula classes.

I am angry every single time a new parent comes to this message board - meaning that yet another child was injured.

I am angry every time I hear parents say that their doctor said to "wait and see" and that it should all be fine within a year and they are not educated as to the time frames for recovery or repair.

[carron]

I am angry at the world at this point in time.
I am angry that I have overlooked my older children in order to take care of HIM.
I am angry that it is a constant fight with insurance and as Francine stated it is a life long injury.
I am angry that I have to educate therapist and doctor's about Brachial plexus injuries.
I am angry that my son has to go through surgery and pain.
I am angry that he won't be able to do things with both hands and arm's all the things he will miss out on.

[admin]

Well...i am new to this..but im not angry.
I am greatful that my baby is healthy! She is alive and OBPI or NOT....she is wonderful!!!!! She is getting better more and more each day and i wouldnt change her or our begining for anything in the world!

Yes i believe that if the doc would have taken her out when i asked she wouldnt be injured...but i cant change the past. Her doc knows that it could have been prevented...and he apoligized. He calls just about every week to see how we are doing.

Her ped and the hospital staff were wonderful after her delivery! They got the therapist in there right away to work with us and she has the same therapist for every visit.

I honestly cant say that i am angry at all. I was more scared than anything...but everytime she sticks her little hand in her mouth while sitting it makes me love her more!!!!

Mandie

[njbirk]

Somehow I think that even the listing of our angers must be therapeutic.

As a person with the injury, my angers are a bit different and yet much the same.

I am angry that I will never know what it is like to have two arms and two hands that function alike.

I am angry that I had to listen to well-meaning doctors tell me that "I should be happy with what I had achieved in life and not seek more" for the first 4 decades of my life.

I am angry that I have to ask for assistance to do things that other people do without thinking.

I am angry that my mother and father had to focus so much of their time and money dealing with this injury.

I am angry for the resentment I felt towards my mother when she made me do therapy.

I am angry that my brothers grew up resenting the attention that I received from our parents.

I am angry that I never had the opportunity to confront the doctor who caused this injury to me.

I am angry that I will never know how my life might have been different.

I am angry that I have arthritis from this injury.

I am angry that my non bpi arm and hand are exhibiting overuse syndrome.

I am angry that I never was able to teach my son how to tie his shoes because I could not tie my own shoes.

I am angry that an organization like UBPN has to exist.

I am angry when people say to me 'it's only an arm' without understanding what that means.

Nancy

[m&mmom]

I am angry that I told this injury would not happen again and that it would be different this time.

I am angry that I keep getting a $95 bill from the high rish ob that told me it wouldn't happen again and that my daughter's injury happended in utero and my son will be born with no injury.

I am angry that my son also sustained phrenic nerve damage and required a month long stay in the hospital after birth due to oxygen requirements.

I am angry that I never got to nurse my son due to the phrenic nerve damage and spent the first year of his life attached to a breast pump.

I am angry that at 10 days old he was transferred to a children's hospital over 90 miles away.

I am angry that I could have taken better care of my son at home after he was transferred out of the nicu to the regular part of the hospital.

I am angry that I will be giving up my career because I can't juggle all of this anymore.

I am angry that most of my son goes to six treatments a week.

I am angry that doctors are crying about insurance rates when they don't know how to diagnose gestational diabetes.

I am angry that we will not be taking a family vacation but going to Texas again this year for surgery.

I am angry that I this injury struck my family twice.

I am angry when people ask me about the injury and roll their eyes like it won't happen to them.

I am angry that this injury effects the ENTIRE family.

I am angry that my son may not be able to follow in daddy's footsteps and be a State Trooper.

I am angry that I have had to find inner strength to deal with everyday life.

I am angry that I have to tell my 2 1/2 year old to hold on another minute because I have to do something for her brother.
Cindy

[francine]

By the way - yes - the goal is to write an article that will help us all deal with our anger. But it has to be identified completely first and what a great way - to get it directly from the source! Thank you all so much for responding. I hope more respond too.
-francine

[Savannahsmom]

I am angry that my OB refused to believe and ultrasound that said she was off the charts weight wise and this could have been prevented. I am made about her pain, inability to live a normal limb life, for her imitations, what would have been, at people who stare at her shorter arm, at the children who I am sure will tease her at some point, the insurance companies for what they do not cover, SSI for income restrictions, and for having to see her daily struggle for each little accomplishment.

[Allison]

I am angry that I was flat out lied to and was told it was just a praxis injury.
I am angry that my OB didn't even ask how the baby was during my follow up.
I am angry that my baby has been seen by 4 different doctors and no one noticed he had a dislocated shoulder, and then was told not to worry about it.
I am angry that all I can think about is this injury.
I am angry that I had to resign from my job.
I am angry that the hospital he was delivered at never told me about early intervention services.
I am angry that I am mentally exhausted.
I am angry that I will not be receiving a degree in the study of brachial plexus injuries.