*****
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was based on an outdated diagnostic definition of persistent vegetative state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-DowdBrenna’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
