Playing Dress Up

Playing Dress Up
Brenna wearing Mama's hat.

Saturday, September 27, 2014

Letter to Idaho Congressional Delegation. Please feel free to use and personalize as an example to send to your own senators and representatives. Post any communications to their online web sites as that creates an automatic legal record. Thanks. Pam

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As a mother who understands the pain a parent feels when something critical happens to a child and as someone who cares about protecting the life of the innocent, I urge you to please join me in my fight for equality of treatment for those who suffer a hypoxic-anoxic injury (HAI) to the brain.
For the past two years, I have been working with Senator Crapo’s staff regarding the lack of research for patients suffering from HAI. My twenty-seven year old daughter suffered a medically unexplained HAI in May 2010. She fought hard to recover for 16 months in a health care system that has increasingly over the past 30 years become cold toward her type of diagnosis. What happened to her could happen in any family.
Her treatment, or lack thereof, was based on an outdated diagnostic definition of persistent vegetative state (PVS), dating back to 1972. What I learned in the process is that few, if any, of the medical professionals who worked with her over the next 16 months were knowledgeable about the recovery of the brain following HAI. Yet, they make daily decisions on the critical decision of who lives and who dies.  None of those who worked with Brenna knew any more about rehabilitation of the brain than I did at the time of her injury. By the time I had spent a month by her side, researching every possible avenue, I believe my knowledge of what the brain could do to heal far exceeded theirs. This is not arrogance on my part. This is the truth I faced.
Daily I am in contact with hundreds of families around the world who are working through recovery of HAI. They are my inspiration to move forward after the loss of my daughter October 1, 2011.
Recently, I began researching the ugly term “persistent vegetative state”.  The term is long overdue for retirement from our vocabulary. I have seen miracles of healing after a family heard this diagnosis.  
Please read the attached letter I sent to Senator Crapo regarding PVS and help me make changes in how our society views and rehabilitates those who suffer a DX of PVS or HAI.
The families I reach daily would like to see the term” persistent vegetative state” permanently retired. As we no longer use “retarded” in DX of human beings, so must we end this usage of PVS.
And, please help me in my fight to include HAI into the CDC requirements for data collection. As things stand, HAI patients are being denied care, therapy, and durable medical equipment, based on lack of data collection.  I am including a list of known causes of HAI.
Lack of data = lack of funding = lack of research = reduced therapeutic opportunities.

I plan to be in Washington, D.C. when the new session begins, ready to work on these issues with any staff members you can assign.
We are all a breath away from being in the health crisis that faced my daughter.
Sincerely yours: 
Pamela G. Blaxton-Dowd
Brenna’s Mom , Founder, Director
Brenna’s Hope Foundation
PO Box 5002
Twin Falls, ID 83303-5002



Enclosure: Known causes of hypoxic-anoxic injuries to the brain

Brenna’s Hope Foundation supports legislation to include, at a minimum, these causes of hypoxic-anoxic injuries (HAI) to the brain to new legislation that requires the Center for Disease Control and the National Institute of Health to begin collecting data that may lead to research for the rehabilitation and recovery of patients suffering HAI. This data collection to be included in current criteria as used for collecting information on TBI at point of admission to emergency rooms and hospitals.

Known causes of hypoxic-anoxic injuries to the brain

Accidental prescription overdose

Asthma attacks

Heat exposure

Heart attacks

Low air pressure

Near drowning

Pressure to chest that cuts off oxygen

Sudden cardiac arrests

Toxic exposures

            Carbon monoxide

Chemical

            Smoke

Seizures

Suicide attempts

Surgical complications
 

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