Life breath: a little girl's courage, a mother's determination, and the healing power of oxygen.
"Even now, it's still a surprise to Lily and me when we hear Grace moving around the house independently, walking up the stairs to her bedroom. We both pause and look at each other to make sure we're hearing what we think we're hearing," Shannon Kenitz relates, with the awe and thankfulness for Grace's progress apparent in her voice. For this mother, who was told that her daughter would never walk or talk, play games or laugh, hold her hand or say, "I love you," the sound of Grace's soft footfalls puttering around in her bedroom upstairs is like sweet music to Shannon.
Grace is now nine years old, with a bright smile and soft, soulful brown eyes that at once seem to shout and dance with youthful exuberance and yet whisper, "Oh, the troubles I've seen." Troubles, indeed. At just three months old, Grace was literally fighting for her life and would for the next three years.
Grace was born on March 6, 1999 at full term, and Shannon says her pregnancy and delivery were uncomplicated. "We took Grace home from the hospital in the usual amount of days and other than a touch of jaundice, she seemed healthy. I had such a feeling of joy. My older daughter, Lily, had a sister, and our family was complete."
But within days of arriving home, Grace's condition took a serious turn. "I started noticing a lot of eye-rolling, and Grace had very little awareness of her surroundings." Intuitively, Shannon knew something was amiss and began seeking specialists. At an ophthalmologist visit when Grace was three months old, she had an eye-rolling episode. The specialist immediately recognized the cause; Grace was having a seizure and was rushed to the hospital. Thus began an arduous three-year journey as Shannon shuffled Grace to doctors nationwide in a desperate search for a diagnosis and treatment. All the while Grace was failing to thrive, failing to gain weight, failing to move through the normal developmental stages that are paramount in those first years of life. But Shannon notes that Grace was also failing to give up, and as long as her baby girl was fighting to live then she was going to help her do so! She was not going to give up hope.
It wasn't until 18 months of age that physicians from the Mayo Clinic finally isolated Grace's diagnosis--an extremely rare and neurologically degenerative mitochondrial disorder. Grace was only the fifth case of this type of disorder worldwide. Doctors at Children's Hospital of New York-Presbyterian told Shannon to "take Grace home, make her comfortable, and to enjoy the time remaining with her." All these years later, Shannon still chokes up, recalling that moment as if it were yesterday. "I was supposed to take my daughter home to die."
By this point in the journey, Grace was three years old and had spent her entire life in hospitals; she was blind, had a feeding tube, could not sit up, crawl, or talk. The family's financial, emotional, and physical resources and stamina were at a breaking point, concerned family members and friends had begun to encourage Shannon to give up the fight, and her marriage was crumbling. "Even my parents, who had been so supportive since Grace's birth, were beginning to tell me it was time to let her go," she says. The emotional strain had reached critical mass, and Shannon's search for treatment for Grace had been exhaustive.
Then she heard about hyperbaric oxygen therapy.
Hyperbaric Oxygen Therapy
Shannon says she was first introduced to hyperbaric oxygen therapy, or HBOT, through her support group, Moms United for Moral Support. Hyperbaric oxygen therapy is based on the availability of oxygen to all parts of the body at the cellular level. For mitochondrial disorders, in particular, the ability of the body's cells to produce energy, and thus function properly, is dependent on the oxygen present to fuel those cells. Without oxygen, cells die very quickly, and if cells die in large numbers, the whole body dies. The better the oxygen exchange process, the better the cells perform vital bodily processes, the better the cells regenerate, etc.
Shannon began doing her own investigation on HBOT, fueled by desperation and a feeling in the pit of her stomach that this was her final push, her last-ditch effort to save her daughter. "In my mind and heart, this was my last chance. I couldn't just let Grace go without having tried this one last thing. I felt like if I tried this then I had tried everything and could find some peace in knowing I had exhausted every option." Grace was a fighter! Shannon knew that, and when almost everyone else in Grace's life had given up hope, Shannon just could not do so. She says emphatically, "It's okay to cry and to be mad and angry, and its even okay to feel sorry for yourself, especially when you see the world around you going on. But the one thing that is NOT okay is to give up. It is NOT okay to GIVE UP!"
And like every other twist and turn on this family's journey, getting HBOT for Grace was an uphill struggle. While HBOT has been used as a treatment modality for conditions like diabetic ulcers, decompression sickness, and burn wounds for years and is recognized by Medicare as a reimbursable treatment for these and a very limited number of other conditions, HBOT is a hotly debated topic among many U.S. physicians for conditions outside the Medicare-approved list. In fact, Shannon relates the demoralizing experience of requesting a prescription for HBOT from one of Grace's physicians at the time. "I asked him to write a script for Grace so he takes out his prescription pad and starts writing. I was so relieved. He tears the prescription off the pad, hands it to me, I thank him, and then I look down at it. He had filled out the whole form and in the space in the middle, he wrote, 'Feed Grace styrofoam 3x times/day, and she will walk.' I was devastated, just so hurt." The doctor's resistance to HBOT and complete lack of faith in its therapeutic benefits had come through loud and clear. Shannon knew she was alone in moving forward with this treatment and began her own search, eventually finding a hyperbaric chamber in Florida that would treat Grace. Shannon began the onerous trek to Florida with her Mom, Dad, daughter Lily, and seriously ill daughter, Grace, stopping only three times between their home in Wisconsin and their southern destination. Grace began treatments immediately, and Shannon says, "Within four treatments, I began to notice a difference."
While HBOT is not a miracle cure for all, many people have experienced stunning results, and Shannon numbers Grace in among those. Most HBOT centers suggest completing at least 40 treatments before analyzing the therapy's effectiveness. As mentioned, Shannon noticed a difference in Grace after just four treatments, but after 40, the transformation was apparent to everyone. "My daughter who had been blind could now see, was tracking with her eyes, and began to grab for items in front of her; she began sitting up on her own; her head control improved; she was more aware and present. She was happy. These changes were HUGE!" But HBOT is not inexpensive, and most insurance companies only agree to cover a very short list of conditions with HBOT. Shannon covered the first round of HBOT out of pocket and was seeing such stunning results that she and a local school held a fundraiser, even going door-to-door to help generate donations for Grace to receive an additional 50 treatments. When the family finally returned home to Wisconsin full time, after two years of HBOT treatments in Florida, they were rejoicing in Grace's progress.
A Place of Grace
In the six years since Grace's life turned around--since she really began living--she has accomplished incredible things, walking, talking, and doing all those things that a typical nine-year-old girl would do. She's discovered swimming and loves to be in the water. She adores music and has recently joined the ranks of Hannah Montana fans. Grace still receives HBOT along with a host of collaborative therapies at a very special center that, by the way, bears her name. With Grace home from Florida and on the road to recovery, one might think that Shannon packed up her years of worry and strife, pressed, folded, and put away her dogged determination, and happily re-entered the world of a suburban mom, thankful for the mundane. Instead, Shannon just re-directed her efforts slightly from daily devotion to saving her daughter's life to becoming a force for advocacy, education, and awareness about HBOT and other integrative therapies and a champion for the saving power of hope! She is now the Executive Director and a national spokesperson for The International Hyperbarics Association, Inc., traveling across the country and facilitating HBOT workshops geared toward educating physicians all over the United States.
Fueled by an intimate knowledge of what families go through coupled with Grace's autism diagnosis at age five, Shannon founded the Wisconsin Integrative Hyperbaric Center, also known as A Place of Grace, in Fitchburg, WI. It opened in 2004. In April 2007 a second facility, similar in every way to its Wisconsin predecessor, opened in Irvine, California.
A Place of Grace is a one-stop shop for families who have a member with special needs, offering help and hope for conditions like traumatic brain injury, autism, rheumatoid arthritis, cerebral palsy, multiple sclerosis, chronic fatigue, stroke, and, of course, mitochondrial disorders. Shannon says, "The Integrative Hyperbaric Centers were developed because we saw a need. I saw first hand with Grace how difficult it was to run from place to place to get therapy, and so we developed A Place of Grace so our kids could have everything in one location." With a full, multi-disciplinary staff of professionals--speech therapists, physical therapists, occupational therapists, physicians, nurses, hyperbaric technicians, nutritional specialists, etc.--who collaborate with one another, the child, and the child's parents, the team can look at the child's overall program and well-being. Therapies are integrative and extensive and include: HBOT, with seven hyperbaric chambers per site; applied behavioral analysis (ABA) therapy; individual and group speech therapy; social skills groups; suit therapy (for children who are learning to walk); and physical and occupational therapy (which addresses fine and gross motor skills). The Centers offer nutritional services with regular cooking classes to teach parents skills like specialized meal preparation for gluten-free and casein-free diets or to teach stroke patients tips for making heart-healthy cuisine. The Centers have an onsite lab for routine procedures like blood work and urine analysis and are staffed with nurses who understand and are skilled in dealing with the challenges of working with a child with special needs. Recognizing the strain that raising a child with special needs often puts on a couple, the Centers offer marriage counseling services as well. Regularly scheduled seminars bring top experts from various fields within the special needs arena to the Center for parent workshops and seminars. A Place of Grace is committed to giving families access to a state-of-the-art facility with a stellar staff, while maintaining a person-centered, welcoming atmosphere--a home away from home.
They don't come tougher or more indomitable than Shannon Kenitz. And yet under an exterior that pulses with bulldog tenacity beats the heart of a mother, a mother who still gets a lump in her throat, a quiver in her voice, and a tear in her eye when she says, "I'm just so thankful that Gracie came back to me and to her sister, Lily. Grace is my hero and my hope. My daughters are my greatest loves."
What is Mitochondrial Disease?
According to the United Mitochondrial Disease Foundation, mitochondrial diseases result from failures of the mitochondria, which are specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more commonly recognized.
The Body's Use of Oxygen and Hyperbaric Oxygen Therapy (HBOT)
First, it is vital to understand the importance of oxygen to the body. One of the body's basic building blocks is oxygen, and the body's major components--water, fat, carbohydrates, proteins--all contain oxygen. The body's energy production, which fuels things like circulation, respiration, digestion, and temperature regulation, is dependent on adequate oxygen. A body's ability to function and to heal when it is damaged is dictated by appropriate oxygen levels in the blood, which carries oxygen to the tissues. With many conditions, adequate oxygen is not able to reach vital organs and tissues.
So looking at the textbook definition, hyperbaric (hyper meaning: an increase in the quality or quantity of something; baric meaning: pressure) oxygen therapy is the medical use of oxygen at higher than atmospheric pressure. Oxygen administered at normal, atmospheric pressure does raise the oxygen level in red blood cells, but when oxygen is delivered with a slight increase above normal, atmospheric pressure, it not only raises the oxygen level in the red blood cells, the transporters of oxygen to body tissues via the vascular network, but also in the plasma and surrounding cerebro-spinal fluid throughout the body.
Dan Rossignol, MD, FAAFP, a staff physician at the International Child Development Resource Center, medical advisor to the International Hyperbarics Association and USAAA, is one of Grace Kenitz's physicians. He explains the mechanics of hyperbaric oxygen therapy on the body in this way: "You are doing two different things in the hyperbaric chamber. You are increasing pressure (above one atmosphere, which is the pressure at sea level) and increasing the amount of oxygen. The pressure 'pushes' the oxygen further into the body's cells. Hyperbaric chambers are designed so that the amount of pressure and the amount of oxygen can be adjusted based on protocol that have been developed and tested to treat specific conditions and disorders and is also adjusted based on what has been shown to be the best pressure and amount of oxygen for an individual patient."
Editor's Note: To view the full interview with Dr. Rossignal visit the EP Web site's Family and Community Channel at www.eparent.com.
Better Understanding the History and Future of HBOT: Two Physicians Weigh In
While hyperbaric chambers and hyperbaric oxygen therapy have been around since as early as 1662, its clinical use began in the mid-1800s. After World War I, HBOT came into use by the U.S. Military, especially as the Navy learned more about how to treat deep sea divers who had decompression sickness, also known as diver's disease or the bends
In the United States, the use of HBOT for conditions like cerebral palsy, mitochondrial disease, stroke, and multiple sclerosis is hotly debated, with healthcare professionals weighing in from one end of the critique spectrum to the other. Some proclaim the use of HBOT, with certain conditions, to be nothing more than quackery and a drain on a family's financial and emotional resources, while others proclaim its use as a life-saving and life-preserving therapy that should be used in tandem with the more traditional forms of Western medical treatment and therapy.
EP talked recently with two physicians, Dr. Paul G. Harch and Dr. Charles A. Adams, seeking background into HBOT in the United States. Both physicians employ HBOT in their private practices. Each offered, in separate interviews, insight into this subject and excerpts from those interviews follow.
Dr. Paul G. Harch is a hyperbaric medicine, diving, and emergency medicine physician and co-author of the book, The Oxygen Revolution. He is Diplomate of the American Board of Hyperbaric Medicine and the Board of Certification in Emergency Medicine of the American Board of Physician Specialties.
When asked about the future of HBOT in the United Sates, Dr. Harch commented:
"I see greater application and public awareness about hyperbaric oxygen and greater awareness within the medical community at the academic level. The number of studies in basic research labs on hyperbaric oxygen, particularly in acute brain injury, has blossomed and is increasing exponentially. There are now just countless studies being done on animals and increasing studies being done on humans. The ones on animals are spanning the whole range of pathological problems in different organ systems, predominantly in the brain. But there are also experiments in transplantation, in cardiac medicine, in all sorts of different acute wound injury models, and biochemical experiments, each studying the effect of hyperbaric oxygen at the cellular and sub-cellular level.
"There was recently an article published in the Journal of American Physicians and Surgeons that made a very powerful point about hyperbaric oxygen in cerebral palsy (CP). It was an article that reviewed the development of [hyperbarics] in cerebral palsy, but secondly, it gathered all the studies that have been published thus far [on hyperbaric oxygen therapy in CP] and looked at those studies that reported an improvement in gross motor functional measures (GMFM), which is a standard test for children with cerebral palsy. They compared it to all the studies in the literature using standard therapies that also use GMFM, and what they found was the hyperbaric oxygen studies had the greatest improvements in GMFM of nearly any studies reported in the standard medical literature ... I think it's the single most powerful argument that hyperbaric oxygen has a significant therapeutic benefit in cerebral palsy. Unfortunately, since it's not one of the major journals ... it's going to be ignored by neurologists.
"What is needed now is exposure to hyperbarics--publicity about it and public demand and accountability. Also more research, published and publicized, in the most conspicuous journals. And the passage of time will help root out long held resistance. The nuclear physicist, Max Planck, once despairingly commented that science sometimes advances funeral by funeral. It's not a kind statement, but it's a statement of fact."
So while things may change as the future unfolds, Dr. Harch also offered this insight into the resistance to HBOT among many in the medical community:
"... with respect to neurology, there persists this dogged resistance to the clinical application of hyperbaric oxygen therapy, a resistance which is rooted in medical politics and a lack of understanding of the scientific foundation of hyperbaric oxygen. With cerebral palsy, for instance, there are at least two clinical studies underway and many of us have our doubts as to whether these are going to turn up positive results like have been seen in other studies. This is true mainly because of the conditions under which [the studies] were launched and the principal investigators who are in charge of them, who are extremely critical of hyperbaric oxygen. I'm not convinced that they have the equipoise to conduct these studies. I'm always concerned when researchers go in with a very negative attitude.
"There is also the issue of the culture of medicine and medical politics. We have to look first at the attitude toward brain injury. If you look at the specialty of neurology, a central foundation and tenet, which we physicians were all taught in medical school and which has held for 100 years, is that there's nothing you can do for a brain injury ... It's a uniquely odd approach in medicine and very surprising when one considers that the brain is the most adaptable, changeable organ in the entire human body. Yet we've had a hands-off approach to the brain from a medical standpoint, other than for surgery. So, first, we have a mountain of academic resistance to even the concept that you can manipulate or alter the outcome of a brain injury. Second, hyperbaric oxygen has been misunderstood. When it was first applied clinically in the United States in the 1960s there was a lot of fanfare ... and hyperbaric medicine from the 1600s on has had a series of boom-bust cycles with enthusiasm and fervor over application with sensational cases and then criticism, suppression and then another round of sensational cases, more criticism, suppression, and so on. And the central problem has been that the hyperbaric medicine community has never been able to adequately explain the science of hyperbaric oxygen. Let me use this as an example. In the last boom-bust cycle in the late 70s, early 80s there was the claim that hyperbaric oxygen could treat impotence, and today the underlying mechanism of the action of hyperbaric oxygen in reference to this condition is explainable with modern science. By way of explanation, we treat diabetic foot wounds with hyperbaric oxygen and are able to cure them, and the patient will recover nerve function in their feet. Part of this healing process is explained by HBOT's ability to stimulate growth of new blood vessels. What is the difference with a diabetes-induced vascular wound in the pelvis that affects the small nerves that control erectile function as opposed to vascular disease that impacts the feet? There is no difference. So when you enclose the entire body in a hyperbaric chamber, you treat all wounds simultaneously. In the 1970s when some diabetic men undergoing HBOT recovered function to the nerves controlling erectile function and claimed they had a resolution of impotence, hyperbaric physicians didn't appreciate that HBOT's ability to grow new blood vessels in the feet would also apply in the pelvis. Well, lo and behold, with today's knowledge, we have another possible explanation for this resolution of impotence, the knowledge that one of the primary biochemical pathways of erectile function involves the neurotransmitter nitric oxide. It's the ability of HBOT to have an effect on the nitric oxide neurotransmitter system in the body that partially explains the sensational claims of HBOT-induced resolution of impotence. Nitric oxide dilates blood vessels, which, coincidentally, is the mechanism of action in Viagra, Cialis, and Levitra. So here we have two potential possible mechanisms of how hyperbaric oxygen may have worked in the old claims of improving impotence. In the absence of the ability to scientifically explain that process years ago, the field took a beating through criticism from those in the academic world. So we have this past misperception and misunderstanding of hyperbaric oxygen ... and so it has been mischaracterized as snake oil and charlatanism and fraud.
"[Additionally], when the application of hyperbaric oxygen for chronic neurological conditions came on the scene in the mid-1970s, it was through a report in Czechoslovakia on the application of hyperbaric oxygen to multiple sclerosis. Dr. Richard Neubauer used it on a few patients and reported it in the Florida Medical Journal in 1978. He was a non-Navy, private physician who was an outsider to the hyperbaric medicine community, which at that time was dominated by United States military physicians. They are the ones who started the Undersea and Hyperbaric Medicine Society (formerly the Undersea Medicine Society) in response to all the clinical applications of hyperbaric medicine. Dr. Neubauer was not well received because this ran contrary to the dogma of this medical society and the practice of hyperbaric medicine, which, within the Navy, had always been for wounds and for decompression sickness, which requires high pressures of oxygen. What Dr. Neubauer showed was that at a lower pressure range, hyperbaric oxygen had a beneficial effect on brain injury. To make room for a newcomer to this field meant cutting everyone's piece of the hyperbaric "pie" thinner and those established in the field simply didn't want that, failing to realize that these new applications of hyperbarics were actually increasing the size of the pie, making more for everyone. Dr. Neubauer was extremely criticized by the neurological and hyperbaric medicine community because he dared to say you could, number one, treat a brain injury and, two, because he had the audacity to continue to treat patients that were not on the narrow list of approved conditions. So this got disseminated through the medical community to sully this man's reputation and, with it, everything he said about hyperbarics. The attitude persists to this day."
Dr. Charles A. Adams is an Internist, whose practice uses both traditional as well as integrative medicine practices like hyperbaric oxygen therapy.
Dr. Adams offered these insights into why he thinks there is a resistance to HBOT in the United States medical community:
"Every doctor knows that HBOT is good for diabetic wound healing and for burn victims who have trouble healing. I had to ask the question, 'Well, why are we only using it there?' Its use is much more widespread elsewhere. For instance, if you have bypass surgery in Russia or China, it's very likely that surgery will be performed inside of a hyperbaric chamber ... "Also, most physicians are enmeshed and entangled in insurance companies. There is a mind set that if the insurance companies don't cover [a procedure or treatment], they must know what they are doing so this therapy must not be worthwhile. That's one set of dynamics. There is also a degree of ignorance about hyperbarics in the profession and folks tend to get down on what they're not up on. Also, hyperbarics tends to be a non-topic in U.S. medical schools, but having said that, the interplay among pressure, carbon dioxide, oxygen and [how they relate to] lung physiology is something that we doctors have beat into us. So physicians understand the concepts and principles but don't take the next step to see oxygen as a healing mechanism."
Dr. Adams speculated on what circumstances might move HBOT forward in the United States:
"I can foresee that sometime in the future every sports team, after every football game or basketball game, will have players jumping in a hyperbaric oxygen chamber ... it will speed their recovery and, in my opinion, would be almost like adding an extra day of practice. Then I think they should probably jump in there the day before their next game. In fact some sports figures have already purchased their own home hyperbaric chamber.
"Another way for the 'lights to go on' [about HBOT] is for surgery to be performed in a hyperbaric chamber. And to take that one step further, if I were going to have an operation, the two days prior, I would jump in a hyperbaric chamber ... then get back in after the surgery, as soon as I possibly could."
Take Home Messages and EP P.E.A.R.L.S.
Many of EP's articles have a scientific and/or technical slant, involving subjects like medical conditions, therapy modalities, legal issues, etc. Below are a few PEARLS that can be gleaned from this article. Think of it as the nuts and bolts of the scientific aspects of this subject.
* Hyperbaric oxygen therapy has proven effective in treating a variety of conditions including, but not limited, to traumatic brain injury, autism, rheumatoid arthritis, cerebral palsy, multiple sclerosis, chronic fatigue, stroke, and mitochondrial disorders.
* Mitochondrial diseases result from failures of the mitochondria, which are specialized compartments present in every cell of the body except red blood cells.
* Presently, only 14 conditions are on the list of conditions reimbursable by Medicare for HBOT.
* The ability of the body's cells to produce energy, and thus function properly, is dependent on the oxygen present to fuel those cells.
* In a hyperbaric chamber the body is placed under hypbaric conditions that combine higher pressure and increased oxygen. When oxygen is delivered with this increase in pressure, it raises the oxygen levels in the red blood cells, plasma and cerebral-spinal fluid, the transporters of oxygen to body tissues.
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|Author:||Hollingsworth, Jan Carter|
|Publication:||The Exceptional Parent|
|Article Type:||Cover story|
|Date:||May 1, 2008|
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