Presentation: ID State House of Representatives 3/26/2012

            March 26, 2012 at 08:30,
Idaho State House of Representatives State Affairs Committee on behalf of Brenna.

Ladies and Gentleman of the Committee,

Thank you for this opportunity to speak on behalf of Senate Bill 1348.

My name is Pamela Dowd, Boise, Idaho. I want to talk about two hospitals with two different attitudes.

I speak today on behalf of my only child, my daughter, Brenna Dowd. She was 27 years old when she suffered a medically unexplained hypoxic brain injury following a retina repair surgery.

On May 26, 2010 at 3 AM, my daughter and I held our last normal conversation. Six hours later, she was breathing but unresponsive.

She was transported to a regional hospital. Over an hour passed before the ER doctor came to give me an update. I wanted Brenna to know her mother was present. He said it would do no good. I wanted to be at her side. The request was denied.

When she was transferred from ER to CCU, I saw abject terror on her face. The negative talk scared her. While physicians felt she “couldn’t understand”, she did. During the following days, I was repeatedly approached to end her life, starve her to death. She was not brain dead. Her EEG was “pretty good” and her brain stem was healthy. One neurologist said it was too early to differentiate between damage and swelling.

I researched treatment and rehabilitation. The response of the CCU doctor in charge was: “No matter what you suggest, I will not change my way of treating her." The CCU doctor refused to contact Brenna’s own physicians. She refused to do anything to reduce swelling in the brain because, in her opinion, Brenna did not have the right kind of injury to cause swelling in the brain. This statement was in direct contradiction to the second neurologist. Pressure to end my daughter’s life continued.

Then, without my permission and against my direct request not to do so, my daughter was suddenly dumped into a Medicare rated one star nursing home, miles from home.

After rescuing Brenna from this nursing home, she spent time in another hospital. There I discovered she had teeth broken at the gum line. I begged for a dentist for her. I was totally ignored and Brenna was allowed to suffer. 4 ½ months before she had to have all her teeth removed, 5 teeth broken, the rest were splintered.

For 15 ½ months I begged to take my daughter home and was denied at every turn. Then, at last it was possible. Eight precious days.

On September 26, 2011, Brenna suffered a sudden cardiac arrest.

This time, Brenna was transferred to the hospital of my choice. This time the experience was different. A hospital chaplain came to be with me. When she began to talk to me in what I called “hospice jargon”, I asked her not to use that terminology. She respected my request and stayed by my side most of the next few days.

I was allowed total access to my daughter in ER. No one suggested that I leave.

In ICU, Brenna was placed in a medically induced coma with Theurapeutic Hypothermia. This therapy reduces swelling in the brain and protects the brain from secondary injury. When she began having seizures, the doctor ordered more testing.

At all times, my daughter was treated with respect and dignity and my concerns addressed. I requested that any discussion of the results of her tests be kept out of her room. That request was honored.

When all tests results were in, I knew that this time, my daughter was not going to recover. There would be no rehabilitation.

I asked to take her home. The staff worked to make it possible.

On October 1, 2011, my daughter came home. We settled her comfortably in her bed and removed her life support. I cuddled my daughter in my arms one last time and this time, I let her go.

The difference in the two hospitals is simple: In the first hospital, they treated a living patient as if she should die. In the second hospital, they treated a dying patient with hope as if she would live.

Today is the 26^th, six months since Brenna’s SCA.

On Brenna’s behalf, I urge you to give this bill serious consideration and pass it from Committee.

Thank you.

National Day of Prayer of all with brain injuries

March is Brain Injury Awareness month. Let us start the month right with a day of prayer.

Brenna's Hope Foundation calls for a national day of prayer for all faiths on March 2, 2014 for all people who suffer a brain injury.

Please mark your calendars and spread the word to all your social media outlets.

Brenna's Blankets-January Event

Brenna's Hope Foundation--Brenna's Blankets

 

January focus in Brenna's honor

Brenna had a big heart for the local rescue mission and women's shelter.

In Brenna's honor, please blanket your local missions and shelters during the month of January.

The after Christmas sales are a good time to look for bargains on blankets. Microfiber is a good choice as they wash up well, wear well, and most important, keep the body heat in better than other choices.

After Brenna's last Christmas before her brain injury, she began shopping for blankets. She said, "Mom, the giving focus is always at Christmas time and people forget that the homeless get cold after Christmas too."

Last year, in Brenna's honor, the Boise Rescue Mission and the women's shelter received 29 blankets.

Brenna taught me more about caring for others than I ever taught her.

Approved-501 (C) (3) status

Brenna's Hope Foundation

Not long ago I called upon Senator Crapo to help get this approval finalized and his staff has been very diligent. Thank you.
I just had the call from Senator Crapo's office this morning. IRS has approved BHF for 501 (C) (3) status. Another reason to be thankful this year.

Now I can move forward to the vision of One Mom-One Voice-One Mission---Positive Action Toward the Rehabilitation and Recovery opportunities for those suffering brain injuries, especially those with an HAI.

If I could turn cartwheels, I would. Thanks to everyone for their prayers and encouragement.

Pam

Brenna's 2008 Paper-Past, Present, Future

This paper is the work of the late Brenna Deshawn Dowd as part of her assessment of her life and education after completion of her first four years of education through the University of Phoenix. Copyright 2008

Past, Present, Future

Personal Growth

Part One-Past

    Life has been a learning experience. I grew up as an only child in a two parent home. My mother taught me a love of reading from the time I was a baby. By the time I was in fourth grade, I was reading sixth grade level books.

During my early years, I attended city council meetings with my mother. Many times when meetings ran long, I spent time in the police dispatch where I learned how dispatchers responded to calls. This foundation gave me a maturity and knowledge of community rules and regulations. My mother’s volunteer work as the executive director of a nonprofit for children with life-threatening medical conditions gave me a connection to children who could not help themselves.

During my junior and senior high schools, I was home-schooled. My mother insisted that I correct every missed problem so I could understand the mistake. Many times, I had to write a paper more than once to show I could communicate well with others. For civics class, I observed criminal trials.

My father had given me my first computer when I was four after Santa Claus promised one under the tree. By the age of 12, I could take the computer apart and make minor repairs. My parents provided me with up-to-date software so I could keep my skills honed for the workplace and college.

After receiving my high school diploma at the age of 17, I attended class at the local community college, majoring in theatrical arts and speech. While holding jobs in call centers and customer relations and one summer as a gravel inspector, I realized I wanted something more. I enrolled in a local private technical college with the intentions of working as a medical assistant. I obtained my certification in phlebotomy and was almost ready for my certification in EKG.

My father died and family dynamics changed. For a few months, my diabetes took a bad turn and I had to put my college on hold. By summer, I realized I still was not satisfied in my career and educational choice and began seeking other opportunities. I knew I would never be satisfied with a life of drawing blood and performing EKGs.

Part Two-Present

Within a few weeks I was enrolled in the UOP sister school, Western International University (WIU). My advisor strongly encouraged me to purchase the APA manual. As I progressed through my studies, that manual became my educational bible. While some instructors allowed the junior college level students to slide by on proper referencing, I had one instructor who was very tough. Through many tears and frustration on “getting it right,” I learned referencing. A personal goal is to contact Sarah Coker and thank her for being so tough.

ETH123 Cultural Diversity opened my eyes to the differences in people.  The class helped me to understand why other ethnic backgrounds respond as they do to situations. I learned that diversity includes gender, race and ethnic background, age, sexual orientation, class and disability.  The instructor became personally involved in the class and gave us insight into personal diversity from his own experience. I this class, I learned that society must be more respectful of the rights and needs of others.

Communications 101 was a refresher course in writing skills. In this class, I learned better ways to communicate effectively. In the workplace, I know I cannot succeed if I am unable to communicate with superiors and coworkers. Poorly written messages with improper punctuation and misspelled words create a negative impression and can cause misunderstandings. I learned the importance of writing clear and concise messages.

BSHS 441Advocacy and Mediation taught me about different types of mediation and advocacy. I learned I am an advocate day-to-day in some way. The class made me realize that when I talk to people about my diabetes and insulin pump that I am being an advocate by teaching people about the disease. My willingness to discuss a new therapy can teach other diabetics that life can be simpler. Sharing ideas with the instructor taught me that a person can use illusions or magic tricks to help ease frightened children into speaking of experiences that have caused them to behave inappropriately. This class should be required for all criminal justice students.

CJA433 Research Methods in Criminal Justice is a research methodology class. The subject matter is so varied the class could be extended. The class taught how to collect data, design a research project and analyze the results. I understood the need for research professionals to abide by a code of ethics and respect the rights of others according to the Nuremberg Code.

Part Three-Future

    Education is a life’s journey. Learning keeps the mind active. As I grow and mature, I will always learn something new and useful in my educational study or my career path. Learning everything I can will help me grow and transition from a mature student into a professional career person.

For my educational goal, I am looking to complete a master's degree in general counseling so I am not limited to one area. My personal goal is to move to a new state that can be called home and closer to my family who are important to me. I want to grow more in my faith walk with God. In my professional life, I plan to work with children who have no voice in the criminal justice system.  Eventually, I would like to open a private counseling service for children. To obtain that goal, I will seek a master’s degree in counseling.

I hope to join the Chamber of Commerce Ambassadors in my new location. This would give me an opportunity to network with other professionals in the community.  After four years of school with few breaks, I would like to attend a Women of Faith Conference to relax and enjoy spiritual growth with other women from all walks of life. Meanwhile I will continue this journey called education.

 

 

 

 

 

 

Mama's Dream

Mama’s Dream

Be careful for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God.         Philippians 4:6 (KJV)

During my sixteen months by Brenna’s side, I had time to think of ways rehabilitation and recovery for a patient with anoxic/hypoxic brain injury could be so much easier for a patient and the family. Before Brenna became ill, she had found a corporate retreat that was ideal. She wanted it to give Type I diabetics and their families a place to come for respite. She was just $3.5 million short.

     I frequently checked the listing on her property. I described the property to her: seventeen bathrooms, eleven bedrooms, an indoor pool, a small, private lake, and a runway. We were still short on the millions needed, but it was all right to dream.

     I talked to her about the fresh air that would benefit patients with anoxic/hypoxic brain injury. I talked about the fish in the lake, the deer on the property, and how Tippy would love to chase the wild turkeys. I talked to her how good it would be for her and others with anoxic brain injury to have such a positive place to recover. She understood.

I dream of positive doctors who have a vision of possibilities, not a group of negatives ninnies wearing blindfolds. I know the possibilities. All families with a patient with a brain injury know. If no one works with the part of the brain that is healthy, trying to reconnect and re-pattern the brain, there cannot be progress. There is no excuse in today’s society for wasting a brain.

I dream of a facility where the patients can go outside and enjoy the fresh air and nature. I dream of a place where the rooms are happy, not depressing shades of brown. I dream of a place where the patients’ pets can stay and be a part of the recovery.

I envision a place where family members can participate with recovery, a place where an interactive computer would keep the patient in touch with family members who cannot be present. To me, these are important to recovery of an anoxic brain injury.

     I dream of software where a patient’s face can be programmed onto an image so the image appears like the patient. I dream of software that shows patients how to move their hands, feet, and heads. I dream of software that shows patients how to walk and how to talk.

I dream of lightweight sinks that simulate a real sink, a sink where patients can learn again to wash their hands.

I dream of a place where all patients have access to a LiteGait to learn to sit, stand, and move their feet again. I dream of every brain injury patient having access to the Quadriciser that re-patterns the brain by use of repetitive motion.

I dream of a place where everyone has a power-lift chair and has the opportunity to sit comfortably as they did at home.

I sat by Brenna’s bed and dreamed all these things. I shared the dream with her. She understood. She smiled.

     If I had a facility, family members would not only be encouraged to learn how to take care of the patient, but they also would be required to participate for acceptance into the program. Patients with family member involvement have a better chance at recovery.

     The medical system tosses obstacles in the way to keep patients on the health care assembly line. Family members are intimidated into keeping their loved ones in a failed system that offers no hope and too many chances to die.

When I begged to bring Brenna home, the doctor insisted that I would need five nurses and five RTs around the clock to care for her. He snidely asked if I had that kind of money. I was spending ten to twelve hours a day with Brenna and knew I could take care of her. I just needed someone to show me how to care for her trach and PEG.

Case managers were no help in finding resources to bring her home. Their role was to slide Brenna into the next level of care on the health care assembly line. I want a facility where the optimum is what is best for the patient’s recovery and return home.

     I fought for sixteen months to bring Brenna home. I knew how to care for her. At NH2, I learned to clean her trach and change the inner cannula. I tightened the trach collar when someone left it too loose. A loose trach collar could cause serious damage to Brenna’s throat.

I cleaned her PEG and changed her formula bottles. I gave her meds through the PEG tube, cleaned her when she was wet, and sometimes changed her clothing alone, just to show myself that I could do it.

I monitored her BG levels. I checked her temperature when nurses did not understand that her hot body indicated a rising temperature or a problem with her diabetes. Any family member can learn these skills.   

I found a facility in Galveston, Texas, that sounded positive. It had an interactive computer system where families and patients could keep in touch on a constant basis. I liked that. The problem for us was that the patient had to be ambulatory.

Anoxic brain injury patients need some place to go in the early days, a place with consistency that is focused on re-patterning the brain. That is Mama’s dream.

Brain Injury Hospital Proposal Support

September 10, 2013

To whom it may concern:

Four years ago, my only child, Brenna Deshawn Dowd, lived a normal life, pursuing her goal as a criminal justice major. On May 25, 2010, she was four classes away from her Masters in Criminal Justice Administration, with all the hopes and dreams of being a voice for young people and children who had no voice in the justice system.

She suffered a concussion as the result of an automobile accident in April 2009. Little did we know how critical a concussion could be. She began to lose her depth perception and proudly held that knowledge to herself. When I discovered her declining vision, I insisted on her seeing a vision specialist. Twenty-four hours after the fourth eye repair surgery, my daughter was comatose, unresponsive.

Thus began our journey through a health care system that is, at best, inadequately responsive to the medical and rehabilitation needs of a person who suffers a hypoxic-anoxic (HAI) brain injury. We were given no hope, yet Brenna knew me from the very beginning. She was not brain dead. Her brain stem was healthy. She still had at least 50% of her brain functioning and the neurologist said it was too early to assess damage until at least 8 weeks. I learned through this journey that few in the medical profession are knowledgeable about brain injury rehabilitation and recovery.

As a mother who approached numerous rehabilitation centers on Brenna’s behalf, I learned the discriminatory practices against those who suffer HAI. I have learned that while the Federal government’s intent is that HAI patients are to be included in the same therapeutic opportunities as TBI, that intent has not trickled down to rehabilitation centers.

For your benefit, I am attaching a recent letter from Linda C. Degutis, DrPH, MSN. Director, National Center for Injury Prevention and Control Centers for Disease Control and Prevention. Her paragraph four affirms the government’s intent to include HAI and TBI on the same levels.

“For the purposes of this section, the term “traumatic brain injury” means an acquired injury to the brain. Such term does not include brain dysfunction caused by congenital or degenerative disorders, nor birth trauma, but may include brain injuries caused by anoxia due to trauma.”

Brain injury rehabilitation is perhaps the last medical frontier, one we cannot afford to ignore. We know so little about this magnificent organ and thousands of patients have so much to gain from a hospital whose sole focus is on brain injury rehabilitation.

The latest figures of the CDC and NIH reports 3.5 million new TBIs every year. This is a critical increase over the previously reported 1.7 million new TBIs per year. HAI patients continue to be uncounted. With this ever increasing number of brain injuries, the numbers of facilities available in the United States are critically limited. In this great country of ours, there is room for more. For the sake of future generations, we must move forward in establishing more brain injury rehabilitation hospitals.

Please give Dr. Senno’s proposal serious consideration for the future of all patients with a brain injury.

Sincerely: 

Pamela G. Blaxton
Founder-Director, Brenna’s Hope Foundation

Brenna and the ACA

I am not an illegal. I am an American born and bred citizen of this country. My husband and I paid our dues to the SS system and to our country. I have the ACA on my computer. When I have questions, I don't go to news sources for answers. I search and find the answers for myself. I have found that news sources, many of them, present their own biases and too many people buy into them.

I wish the Affordable Care Act had been in existence for Brenna. Perhaps she would be alive today. As a diabetic she could not get ANY health insurance, and as a single person, living a clean life, getting her education, with no children, not pregnant, and not a felon, she did not qualify for Medicaid. It took me 37 months to get her on Medicare because of her diabetes...and she was a brittle diabetic. Had she gone to a shrink and been DX with a mental disorder, she would have been accepted for SSD a lot sooner. Before she suffered her brain injury after a surgery, we were packing to move to another state where there was supplemental insurance for the disabled. It did not exist in Idaho and 22 other states. The ACA provides for that now. Too bad Idaho was one of the states that had to be forced into providing health care opportunities for the vulnerable.

When Carrol died in 2004, I was one of the uninsurables. I was 57 and too young to draw widows' benefits through his SS---and had to wait until I turned 65 for Medicare. I put my health on the shelf, not taking needed meds because I qualified for nothing---insurance companies turned me down, naming every time I had been in the doctor's office for 10 years as a reason to deny me.

The ACA gets rid of the pre-existing conditions clauses, life-time caps, and provides for supplemental insurance for the disabled. Had we been able to get health insurance for Brenna, you can be dang sure that she would have had the coverage through an insurance plan. For us and people like us, the ACA is a blessing. Too late for Brenna and I sincerely hope none of my friends ever have to experience the horrors Brenna did for 16 months in a system that would not allow a promising young lady to get the care she needed to recover.

Incidentally, Nixon's health care proposal has the same basic ideas as the ACA.

At what point does our society suggest euthanasia or in reality, murder of a patient, because they have "outlived" their affordability? Not easy to decide when it hits your own family. If we truly believe that people deserve to die because they have lived beyond their affordability, then shut down the hospitals and never send out another ambulance. Just let them die if they have no insurance. Is that what you want? If it were your uninsured child or grandchild, is that what you want?

Brenna was 28 when she died and four classes away from her Masters in CJA. She deserved better. I offered to give up ANY possibility for new knees if the money could only go to her rehabilitation. (Rehab limits are the same for new knees as it is for a brain injury.)

Walk in the shoes I walked in for 16 months and your outlook on health care will drastically change. I sincerely hope you don't ever have to. I have no regrets for being at Brenna's side for 16 months. She was never a burden. I sacrificed nothing. I was not a hero. I was just her mom, doing what mother's do, loving her daughter and giving her the chance to continue being the wonderful person with dreams that she was the day before her brain injury.

Brenna's Paper on Ethics

While going through Brenna's external hard drive, I discovered her paper on ethics. I had never seen this before and am so proud of her. This paper is copyrighted and may not be used without permission. 

Ethics Awareness Inventory:   Results and Analysis

Brenna Dowd

July 28, 2008  

 Introduction

            Self-assessment is a journey into who I am, what I believe and how I reached this point in life. Answering questions about ethics and reviewing the results has made me more aware of my personal ethics and how those correspond with personal beliefs. Growing up I learned from my parents to have high standards when working with people. While my viewpoints on issues may have changed through the years, my fundamental ethical system has been strengthened, not changed.

Ethical Perspective

            My ethical perspective closely follows the deontological theory of Immanuel Kant and John Rawls. Duty and obligation are comingled in my individual assessment. I consider the intent of people’s actions and believe that the end does not justify the means, especially if people are harmed in the process. Through the years, I have grown skeptical of decisions made where the bottom line is the dollar without consideration of the impact on the humans involved.

Ethical Style

            Everyone has the right to individual respect with equal opportunity for advancement for all segments of society. Dehumanizing other people for the sake of society or personal gain is not a positive in life and I do not believe society benefits from such actions. When I read about the treatment of prisoners at GITMO, one side of me says, “They are terrorists.  Who cares?”  The other side of me says, “This is not how humanity should treat another human being. We should be better than this.” 

Personal Frustrations with Ethics

            At times, my sense of obligation to others puts me in a bind. I do not like telling someone I cannot follow through with a project once I have committed. This may lead to a health problem with my diabetes, but I work to complete what I started, no matter the personal consequences to myself.

When dealing with others, I expect them to act responsibly and to use good judgment and sound ethical basis for their decisions. I am open to listen to other viewpoints and work out a compromise to complete a job. However, I have little tolerance for those who shirk their responsibility to the project, who lie about their input yet are willing to accept the same reward as those who gave the project 100% of their time and energy.

Educational Experience

            While at times it seems like yesterday when I began classes at University of Phoenix, the reality has been a personal growth and awareness. My first academic advisor insisted that I purchase the manual on APA formatting and learn referencing. His insistence has been a blessing in disguise for my educational experience.

            I have learned skills to avoid plagiarism, not only in my own work, but I have learned how to detect plagiarism in the works of teammates. My first team experience taught me that standing alone on a critical issue is all right when standing alone is the right thing to do. I can compromise on content and method of accomplishing a project.  However, I will never accept plagiarism on any project to which my name is attached. 

Conclusion

            Ethics and values are part of everyday life. Whether making decisions on personal relationships or on behalf of a billion dollar corporation, the bottom line is, “Can I look in the mirror and like the person who looks back at me?”

 

 

Letter to Kathleen Sebelius and the response

Brenna’s Hope Foundation A Voice of Brain Injury Education and Awareness

July 14, 2013

Secretary Kathleen Sebelius
United States Secretary of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Honorable Kathleen Sebelius:

My concern for hypoxic-anoxic brain injuries is three-fold:  1) The definition of “traumatic brain injury” as it appears in the Traumatic Brain Injury Act of 2008, 2) the lack of data for hypoxic-anoxic brain (HAI) injuries with the Center for Disease Control, and 3) the lack of clear definition in the ICD code for HAI .

Three years ago, my only child suffered a hypoxic brain injury after her fourth eye repair surgery to correct damage she obtained in an auto accident the year before. We were thrust into a world of unfamiliar medical terminology, the “let her die” attitude, and given no hope of recovery. Her brain stem was healthy. Most of her brain was not damaged and the second neurologist said it was too early in those first days to assess damage.  As I worked with Brenna for over 6000 hours in the next 16 months, I realized that our medical system was fraught with too many with obstacles to allow the optimal recovery of a hypoxic-anoxic brain injury.  While looking for answers, I discovered the Traumatic Brain Injury Act of 2008.

First:  I am particularly concerned about page 7, lines 4-9 and page 10, lines 22-25:

Page 7, lines 4-9:
(c) Definition- For purposes of this section, the term `traumatic brain injury' means an acquired injury to the brain. Such term does not include brain dysfunction caused by congenital or degenerative disorders, nor birth trauma, but may include brain injuries caused by anoxia due to trauma including near drowning. The Secretary may revise the definition of such term as the Secretary determines necessary.'."

Page 10, lines 22-25

The Secretary may revise the definition of such term as the Secretary determines necessary, after consultation with States and other appropriate public or nonprofit private entities.’’;

This bill gives you the authority to revise the definition as you feel necessary. Anoxic injuries are caused by many other conditions, most of which are not near drowning. In my daily contacts with families who have a loved one with an HAI, other conditions that cause an HAI are more common. These include asthma attacks, sudden cardiac arrests (SCA), complications following surgery, and toxic exposures.

The language of the TBI Act of 2008 as it affects acquired brain injuries appears ambiguous at best. I respectfully request that you consider a change to clarify the status of all those with an acquired brain injury. I am including a definition as given by the Kentucky General Assembly.

In 1998, the Kentucky General Assembly identified a Traumatic Brain Injury as:

Traumatic brain injury (TBI), as defined in statutes KRS 211.470 to 211.478, is a partial or total disability caused by injury to the central nervous system from physical trauma, damage to the central nervous system from anoxia, hypoxic episodes, allergic conditions, toxic substances, or other acute medical clinical incidents resulting in impaired cognitive abilities or impaired physical functioning. TBI does not include strokes treatable in nursing facilities; spinal cord injuries; depression and psychiatric disorders; progressive dementias and other mentally impaired conditions; mental retardation and birth defect-related disorders of a long standing nature; or neurological degenerative, metabolic, and other medical conditions of a chronic, degenerative nature.

My second concern is the apparent lack of reporting criteria for HAI with the CDC. A search of their site does not give adequate information on the numbers of HAI in the United States.  The causes of an HAI are as identifiable as those who suffer the more commonly known TBI, caused by blunt force trauma or penetration of a foreign object.

Third:  The ICD for hypoxic-anoxic injuries needs to be expanded. While TBIs are easily identifiable based on cause of falls, auto accidents, domestic violence, and other known causes, HAIs may also have a clear cause besides near drowning.  For example, asthma attacks, SCA, surgical complications, and toxic exposures.

I respectfully ask for your consideration of these three concerns for people who suffer an HAI, that they may gain access to the same levels of care as those with the more commonly known TBI.

Sincerely:

Pamela G. Blaxton-Dowd
Founder: Brenna’s Hope Foundation

 

RESPONSE FROM US DEPARTMENT OF HEALTH AND HUMAN SERVICES

August 9, 2013

Dear Ms. Blaxton-Dowd:

I am writing in response to your letter to Secretary Sebelius expressing your concerns about the definition of traumatic brain injury (TBI). She asked that I respond to you because the section of the TBI Act of 2008 you inquired about relates to the Center for Disease Control and Prevention’s TBI prevention work, performed here at the National Center for Injury Prevention and Control (NCIPC).

First, I want to thank you for reaching out. Your account of Brenna’s injury and the aftermath is moving, and your efforts to advance brain injury education and awareness through Brenna’s Foundation are an inspiration. I am sorry for your loss and commend your hard work on this important issue.

In your letter, you asked that HHS consider revising the definition of TBI found in the TBI Act of 2008. You expressed concern that this definition (which includes “brain injuries caused by anoxia due to trauma including near drowning”) would exclude causes of anoxic brain injuries other than those caused by near drowning. However, the language “including near drowning” does not exclude other causes. Rather, it specifies that near drowning should be specifically included. In support of this point, I would direct you to 42 U.S.C . § 280b-1—the main Federal law authorizing CDC’s TBI work—which uses nearly identical definition for TBI but does not use the “including near drowning” language:

For the purposes of this section, the term “traumatic brain injury” means an acquired injury to the brain. Such term does not include brain dysfunction caused by congenital or degenerative disorders, nor birth trauma, but may include brain injuries caused by anoxia due to trauma.

More importantly, you are correct that both the TBI Act and the CDC’s NCIPC do tend to emphasize the prevention of brain injuries caused by traumatic events like care crashes and falls. But this does not mean that hypoxic and anoxic brain injuries (HAI) that are caused by events like cardiac arrest and toxic exposures are not studied elsewhere at CDC and the Federal government. As you know, HAI can be caused by any medical condition or incident that deprives oxygen to the brain. Scientists at other Centers within CDC are working to advance prevention of these other potential causes of HAI, like our Division of Heart Disease and Stroke Prevention or CDC’s National Center on Birth Defects and Developmental Disabilities.

This focus on preventing the underlying causes of HAI helps explain the reporting issues you mention in your letter. You are right that public health surveillance is not routinely conducted for HAI as a medical outcome. Public health surveillance generally examines the underlying conditions or circumstances that can lead to HAI, like stroke and cardiovascular disease, which will better inform prevention efforts than surveillance solely of specific outcomes. This may explain some of the difficulty you had finding conclusive statistics on the incidence of HAI.

Finally, you also asked that the ICD codes of HAI. While there are ICD-9 codes for HAI, they are not included in CDC’s ICD-9 definition for TBI. This is for reasons explained above—our TBI definition tends to focus on those injuries caused by traumatic events like car crashes or falls, given our expertise in injury prevention. The expansion of ICD codes, which you mentioned in the letter, falls outside of CDC’s control. The World Health Organization is responsible for ICD code definitions.

Thank you again for your letter and your efforts to advance TBI awareness and education.

Sincerely,

Linda C. Degutis, DrPH, MSN
Director
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention

 

 

Idaho TBI Summit-May 28, 2013

Panelist: Pamela Blaxton-Dowd

Author and Mother

Boise, ID

Introduction:

 
Pamela Blaxton-Dowd is an author and mother whose daughter, Brenna, died after a series of complications that began after receiving a mild TBI in a car accident.

Remarks:

Senator Crapo, thank you for listening to this mother’s heart and hearing my concerns about people with a brain injury who have limited access to recovery opportunities because they have a pre-existing condition and inadequate health care. I am grateful to all who made this summit possible. I come today to give a mother’s viewpoint.

In April 2009, my only 26 year old daughter suffered a concussion. We were unaware of how critical that diagnosis was. Her vision began to change. Her depth perception was impaired. She screamed when I touched her. On May 26, 2010, after her fourth corrective eye surgery, she suffered an anoxic brain injury.

We were suddenly thrust into a world of unfamiliar medical terminology, the “let her die” attitude, and given no hope of recovery. Brenna was a Type I diabetic and dependent upon Medicare for her health care.

I soon learned that Brenna’s recovery depended on my 100% involvement. She struggled hard to recover. She always recognized her mother and responded to me. She expressed a wide range of emotions. She learned to walk up to 1000 feet in the LiteGait, a walking assist machine.

 

Her recovery was not fast enough in our existing system. Therapies were shut down and rehabilitation hospitals refused to accept her. She was effectively warehoused.

Brenna was one of the unfortunates. I did not have the money to buy the care she needed.

In the 16 months of her valiant fight to recover, I spent over 6000 hours by her side, doing what I had been told could not be done—recover from her brain injury. At 15 months post injury, I heard “Ma-um.”

I came to understand that few of the medical staff who treated my daughter were any more familiar with brain recovery than I was. Too many decisions were based on Brenna’s lack of private insurance or cash.

Brenna died on October 1, 2011, not as the result of her brain injury, but what I view as a breakdown of health decisions that led to a sudden cardiac arrest. She was 28 years old, four classes away from her Masters In Criminal Justice Administration.

 

With 3.5 million new TBIs each year, TBIs are 15 times more prevalent than breast or prostate cancer. Anoxics are uncounted.  We know what happens when we continue down the old paths that lead to rehabilitation failure and warehousing. As a mother I believe that HBOT should be available to all brain injuries in the earliest stages. There is nothing wrong with failure but there is something seriously wrong when we fail to try.

When you have seen one brain injury, you have seen one brain injury. We must find positive answers toward recovery for all brain injuries.

I can do no more for Brenna. I can lead the way to change for others.

3 Years-Missing my little girl today

Three years ago today, I found my daughter Brenna unresponsive, 24 hours after a simple eye repair surgery. This thrust us into the middle of a world of unfamiliar medical terminology, the "let her die" attitude of professionals, and being given no hope of recovery.

Brenna fought 16 months to recover, walking up to 1000 feet in the LiteGait, and learning to speak a few words. Sadly, due to a culmination of many medical "mistakes", she suffered a sudden cardiac arrest 16 months later, and I was allowed to bring her home to die.

In Brenna's honor, I will be speaking Tuesday morning at Idaho's first TBI Summit, featuring Senator Mike Crapo and a panel of professionals, and people who have been touched by brain injuries. The time is 9:30-11 AM at ISU's Stephens Performing Arts Center in Pocatello, ID.

I will be speaking as a parent whose daughter first suffered a concussion (TBI), followed 13 months later by her 4th surgery to correct her vision and her anoxic brain injury. I will speak of what happens in the system when a person has no health care due to a pre-existing condition and suffers a brain injury. For this, I will be given 3 minutes.

I miss her more and more each day. In her honor, I can do no more than to bring to the world, her story, what happened to her at the hands of professionals without a heart.

Pam
Brenna's Proud Mother

Idaho TBI Summit - Senator Crapo Press Release

 

IDAHO BRAIN INJURY SUMMIT REACHES OUT TO

VETERANS, PARENTS 

 

Crapo is opening speaker at the Pocatello event on Tuesday

Pocatello – Many Idahoans may be suffering from undiagnosed traumatic brain injuries resulting from battlefield conflicts, high school sports injuries, automobile accidents and even incidents where seniors have fallen down. Given the growing magnitude of these injuries, Idaho Senator Mike Crapo is joining with the Idaho Doctors Hospital, the Aegis Research Institute at Bingham Memorial Hospital, the Institute of Rural Health at Idaho State University and many Idaho physicians to launch the Idaho Traumatic Brain Injury Summit. The Summit will be held Tuesday, May 28, 2013, on the campus of Idaho State University.

According to physicians at the Idaho Doctors Hospital in Blackfoot, statistics from the Centers for Disease Control and Prevention (CDC) show that traumatic brain injury (TBI) is at near-epidemic proportions in the United States. Despite the prevalence of TBI, there remains a critical need for improved diagnosis and treatment in order to increase survival rates and improve quality of life for TBI patients. The CDC reports that TBI is a contributing factor in nearly one-third of all injury-related deaths in the U.S.

This is Idaho’s first major forum on TBI injuries and treatment. In November 2012, the Aegis Research Institute at Bingham Memorial Hospital announced it has been selected to participate in the National Brain Injury Rescue and Rehabilitation Study. The study, conducted by the International Hyperbaric Medical Association, is focused on the use of Hyperbaric Oxygen Therapy in treating TBI. Other interested Idahoans will also be in attendance, representing the diversity of those impacted by TBI. Twin Falls Superintendent of Schools, Dr. Wiley Dobbs, is expected to attend, as is Ms. Pamela Dowd. Ms. Dowd’s daughter, Brenna, lost her life following her TBI, prompting Ms. Dowd to travel through 21 states to raise awareness about the severity of such injuries.

News Conference to open Idaho Traumatic Brain Injury Summit:

Tuesday, May 28, 2013

9:30 AM Mountain Time

Rotunda, Stephens Performing Arts Center

Idaho State University

1002 Sam Nixon

Pocatello

Among the other local experts speaking at the Traumatic Brain Injury Summit:

· Mary Himmler, MD, Physical Medicine and Rehabilitation Specialist at Fort Hood, will present information on TBI among Iraq and Afghanistan veterans and the typical recovery and treatment process. Previously, she treated soldiers with TBI at Walter Reed Medical Center.

· Lt. Col. Mary Kelly, Transition Assistance Advisor at the Joint Forces Personnel Readiness Center in Boise, will discuss the transition from military to civilian life for TBI survivors.

· Judge Rick Carnaroli, Idaho’s Presiding Justice over the Veterans' Treatment Court from the 6^th District, will discuss TBI issues relating to Idaho’s criminal justice system.

· Russ Spearman, Director of the ISU Institute of Rural Health's Traumatic Brain Injury Network, will address Idaho-based needs and potential solutions available through public health and health policy systems.

· Dr. Wiley Dobbs, Superintendent of Twin Falls School District, will present information on TBI as it relates to middle and high school sports injuries.

· Dr. Bernadette Howlett, Director of the Aegis Research Institute, will present an overview of TBI and its epidemiology.

· Jim Jones, a Vietnam veteran and study volunteer, will discuss treatment and recovery options related to TBI and Post Traumatic Stress Disorder (PTSD).

· Barb Fox, who received a TBI in a car accident, will discuss her treatment and recovery from both TBI and PTSD as a civilian.

· Pamela Dowd will focus on family involvement and health insurance issues related to TBI, from her personal experience through the death of her daughter, Brenna, from complications of a TBI She is the author of "Condemned to Die-- Ask Me How, Tell Me Why", and the founder of both the Brenna’s Hope Foundation and the website, LuvURBrain.org.

· Jeff Hampsten, owner of Idaho Wound Care and Hyperbaric Medicine, will speak about research on the efficacy of Hyperbaric Oxygen Therapy as a treatment for TBI.

To directly link to this news release, please use the following address:

http://crapo.senate.gov/media/newsreleases/release_full.cfm?id=342878