Psoriasis Patient - Before Treatment

Psoriasis Patient - After Treatment

Rebecca’s Story: One Child’s Journey
IN SEARCH OF HBO2

My wife, Denise, and I had a perfect life planned for us and our soon-to-be-born child. We had established ourselves financially and planned out every aspect of caring for our, at that time, healthy unborn child, Rebecca.

But no amount of preparation prepared us for the tragedy that struck: Rebecca “died” at birth for 35 minutes and was on life support for the first six days of her life, virtually brain dead.

We were terrified of Rebecca eventually dying “by herself,” so we made the decision to remove her from life support so that she could die in our arms with all of our love surrounding her. We dressed Rebecca in her prettiest outfit, put a bow in her hair, and went into a private room with a nurse. We were fully aware of the tragic finality of this decision. Rebecca stopped breathing twice in the first ten minutes. The second time it happened, the nurse thought she had passed. As we cried for our lost baby, our tears fell on her beautiful face and touched her soul. Somehow, Rebecca caught her breath, and two hours later was breathing regularly with good colour.

At 10:00 p.m., we put her to bed and kissed her good night. At that moment, Rebecca literally opened her eyes and began to move her arms and legs, and she cried. Of course, we were ecstatic. But her miracle was so extreme and so complete, we did not know that a true miracle had occurred.

The doctors, of course, thought we were mistaken. They told us she would not survive. When she continued to survive, they said she could not see. When it became apparent that she could see, they thought she would be a vegetable. When Rebecca decided she did not like peas and carrots, we knew she could think. It soon became obvious that she was a very bright young lady, with a sparkling personality and a heart warming smile. She also was severely afflicted with cerebral palsy.

This was our initiation into the inability of otherwise excellent physicians to discern who Rebecca was and how we should manage her medical care. In fairness to all the medical community who tried to help us, Rebecca’s survival was completely unexplainable. And while she was very bright, there was no question about the extent of her brain injuries. In fact, Rebecca was one of the most severely afflicted cerebral palsy children in our immediate medical community.

At first, our greatest challenge was to obtain factual information about the exact nature of Rebecca’s injuries and to learn about the medical treatments that were available to help her. Preconceptions and biases delayed our journey from the beginning. Thus, we began our long journey in search of this book.

While Rebecca was in the neo-intensive care unit of the hospital, her mother and I instinctively began helping Rebecca move her arms and legs. We wanted to keep them from becoming stiff. We believed we could keep Rebecca from developing contractures by keeping her limbs moving and flexible. (Of course, the NICU physical therapist was not allowed to spend time with us because the doctors did not think Rebecca would live. In fact, they continued to say she would not live.)

Finally, when the physical therapist noticed that we were not smart enough to believe what the medical experts told us, she gave us physical therapy instructions. As a result of this early work, and our efforts that continued throughout her life, Rebecca has never had a problem with contractures and all of the related disabilities.

(It is part of the theorem that the earlier you start treatment, the more often the results are favourable.)

when Rebecca was ready to leave the neo-intensive care unit, we were primarily on our own. We immediately began searching for information about cerebral palsy, physical therapies, and answers we needed to other medical questions. At first, we bought a number of excellent books. They were full of definitions, but contained very little in the way of care management insights.

At the same time, we were searching for the best neurologist in the United States. That’s how we met Dr. William Mobley of the UCSF Medical Center. We were very lucky; Dr. Mobley not only knew Rebecca’s neurologist, Dr. Asaikar, but thought the world of him. This was a great help to us in organizing Rebecca’s care and making certain we did everything we could to help her. Not everyone is so lucky to have two such wonderful doctors caring for their child. Thus, we had more information and understanding of the problem than most parents.

In spite of all they could tell us, however, we still had great difficulty pulling together all of the information we required to fully help Rebecca develop.

Several times during the first three years of her life, we were fully responsible for keeping her alive until we could get to an emergency room. Knowing infant cardio pulmonary resuscitation (CPR) was not at option for us; it was necessity.

We worked with Rebecca on every aspect of her development using every technique we could learn about. She flourished under the various physical therapies we tried and she developed well, with no contractures and good flexibility.

But while Rebecca was developing far better than many other children who had far less injuries and damage, she hit a stubborn plateau. Her greatest challenge, gaining head control, continued to elude her. This affected all other areas of her physical movement.

We had established a website for helping other disabled and disadvantaged children and their parents who were also searching for answer and solutions. Through this website, www.littlestangel.com, we had that moment of “awakening” for which every parent of a disabled child searches. Denise and I came across information that would change Rebecca’s life and propel her development. It proved, beyond a doubt, that “life is stranger than fiction.”

To our amazement, our further investigation and research showed that “unsubstantiated alternative medicine” for children with cerebral palsy was based on much more substantial basic science and medical research than were the accepted mainstream medical treatments.

For a year, we studied recent discoveries of brain injuries regarding the “penumbra” of the injury loci. We discovered that this penumbra of injured and/or metabolically inactive cells could make a substantial difference in a child’s development.

This concept was not entirely new to me. Twenty years earlier, as an undergraduate in the University of Vermont’s Medical School, Department of Neurobiology, I had conducted research on the central nervous system nerve regeneration. At that time, researchers had simplistically viewed nerve regeneration as something lower vertebrates could accomplish, but higher vertebrates could not. That is where all the research interest remained (as far as I knew). I was not aware that some researchers had discovered that there was a factor like a “penumbra” to assist in helping brain-injured patients.

The idea of a penumbra of brain cells really excited us because it gave us something that was possibly recoverable to work with. Up until that time, we had based our therapies on the concept of “neuronal plasticity”; that is, a neuron’s ability to sprout new connections to effect movement learning.

The next questions we had to answer:

“How to best proceed?...and where to go for treatments?”

After much research and thought, we had almost settled on trying hyperbaric treatment (HBOT) rather than vasodilator drug treatments for several basic reasons. But we were, oh, so tentative about taking the first step. Every physician and neurologist we spoke with about the idea told us that these techniques were “not proven.” More important to us, they said that HBOT treatments would provide nothing to Rebecca…and could make her worse. The gamble of injuring Rebecca was too much for us to even consider.

Then, once again, fate interceded. While attending an education class in Chicago, my wife and I met two mothers who spoke highly of the specific motor skill gains their children had achieved with hyperbaric treatments. One of the mothers suggested we go to Canada for treatments because it was less expensive. The other mother told us to go to a “Dr. Neubauer” in Florida because he was the most experienced.

Our decision to try HBOT was almost completed when Rebecca’s guardian angel gave us yet another “shove.” It was only an hour after our conversation with the mothers that we received a phone call from Dr. Neubauer’s clinic. The administrator of the clinic wanted to know if our company, Spectrum Events, an international medical meeting planning corporation, would be interested in personally managing an international symposium on hyperbaric oxygen treatments for the brain-injured child.

We immediately left Chicago and returned to our home in California. From there, Daddy, Mommy, and Rebecca flew on to Florida to meet “Dr. Neubauer.”

Prior to starting the HBOT, Dr. Neubauer recommended we take a SPECT scan to determine the current condition of Rebecca’s brain. The SPECT scan session was quite painless and without incident. Because Rebecca had to lie still for about one-half hour, she was given a small dose of valium to quiet her down. Despite that, she was an active five-year-old, and she wanted to look around. She was, however, her usual cooperative self. When I requested that she continue to lie still, she did so.

When I first saw her SPECT scan results, I cried. The extent of her brain damage was clearly obvious. I kissed Rebecca a hundred times that day in appreciation of how well she responded in spite of this extensive damage. After 36 HBOT sessions, I saw her next SPECT scan. Again, I cried. This time I cried because her response to HBOT was very obvious and equally extensive. I kissed Rebecca a hundred times that day as well. I knew we were on the right path to helping her reach her potential.

When we arrived at the Ocean Hyperbaric Center in Lauderdale-by-Sea, Florida, I spoke to Dr. Neubauer briefly about the conference that he was planning to hold…and then Rebecca and her Daddy entered the hyperbaric chamber for the first time.

This was a big afternoon! I felt an exhilaration and excitement over the prospect of what might come to pass. For the first time since Rebecca’s birth, there was real hope that we were about to see the beginning of new progress and an end to a part of her past therapies. Rebecca had been told that she was getting a new therapy, and like the good soldier she is at all times, she did just what was required of her.

As we became pressurized, Rebecca became very active. At first, I thought it was from the excitement of being in a very small space with Daddy – what fun! But as time went on, I determined that it was more than just excitement; it was because of her response to HBOT. It “woke” her physically and gave her an energy level that was not unique, but is often attained as a result of HBOT. From the first, there was obviously something going on with her physiologically that seemed very positive.

After only six sessions, we took the weekend off to visit Rebecca’s Florida grandparents for the weekend. I had noticed that her movements had more control and were much more smooth when she moved or reached for something.

More importantly, we also discovered, quite by accident, that for the first time in her life, Rebecca could swallow “thin” liquids without choking. The only reason we tried the orange juice without “thick-it” added was because we had forgotten to pack it in our travel bags.

Swallowing liquid without an additive was a major step for Rebecca, as swallowing is a very complex movement requiring many muscles to work in harmony. Before her HBO2 treatments, Rebecca could only drink highly “thickened” liquids; these liquids had to be made to a gelatinous consistency. Even then, she would still choke from time to time. What a wonderful surprise to discover her ability to drink regular drinks. All of us were elated.

It soon became apparent that Rebecca had made more significant advances in the first six sessions of HBOT than she had in four years of speech therapy and two and one-half years of feeding therapy! From that moment on, Rebecca, her Mommy, and her Daddy have been fully convinced of HBOT’s immediate and long-term benefits.

Even though most chambers are basically alike, it is how the craftsman uses the tool, and not the tool itself, that is the mark of a great artist.
As a parent with a child with severe cerebral palsy, my strong advice to parents who are considering HBOT for their child is this: Go to the absolutely best center you can get to regardless of cost or travel issues. It is so important that you choose a center that will set you off on your journey on the right path, with the right compass and an accurate map. This is why we travelled from California to Florida to the Ocean Hyperbaric Center. We had learned through our research that it was the best and most experienced center in the U.S., if not the world.

Since that time, Dr. Neubauer has introduced us to other centers so that our travel burden would be lessened. But it was our experience and training in safety at Ocean Hyperbaric Center that gave us the knowledge to be able to discern some important safety features and quality differences that helped us in our search to locate an appropriate center that is geographically closer. First, however, this center must comply with Rebecca’s needs, treatment nuances, and safety considerations. Because we started out correctly, we feel we can make such decisions with confidence as we move forward.

Today our current dilemma is how to integrate Rebecca’s HBOT with her other weekly movement therapies. We think that will give her better development, with less work and effort. As I’ve said in other places, the need to keep finding the best system for a special child requires ongoing research, time, and effort.

The second thing that is critical in selecting a center is how they measure progress. It is essential to know where you are starting from and to be able to measure progress with some accuracy through a viable methodology. Dr. Neubauer has aggressively pursed imaging technologies to help his patients make decisions about whether HBOT is helping a child or not. The use of SPECT scans clearly documented for us where Rebecca’s brain was active and where it was inactive. Taken again after appropriate treatments, we were able to see where changes were taking place. Consequently, my second advice to parents is that the find an HBOT center that uses SPECT or PET scans to determine the efficacy of the HBOT treatments.

Now, with our knowledge of HBOT safety and Dr. Neubauer’s clinical experience, combined with the information we have gleaned from the various SPECT scans, and the way Rebecca has responded to HBOT, we feel we are in a good position to go to a different HBOT center with minimal risk.

After her first dose of hyperbaric oxygenation treatments, Rebecca went to see her wonderful neurologist, Dr. Asaikar, for her semi-annual check-up. We had not told Dr. Asaikar about our decision to have Rebecca undergo hyperbaric oxygen treatments…and we did not tell him where she had been at the beginning of the check-up.

Dr. Asaikar could not stop praising Rebecca’s progress. He was absolutely amazed at the progress she had made in six months. He was equally amazed at the changes in her brain scans.

Two months later, Rebecca’s therapists unanimously noted that Rebecca had passed her plateau, gained more control, and had better tone and flexibility.

She was progressing faster than she had ever done before!

After Rebecca’s second set of hyperbaric oxygen treatments, we focused on her physical therapies, primarily on movement therapy in hopes of “programming” newly awakened neurons. Soon we saw substantial changes and greatly improved head control.

Halfway through her third set of treatments, Rebecca began speaking. It was only a few words, including “good” and “yogurt,” but we were thrilled. We had waited for so long to hear her speak. She was thrilled as well. It was obvious to us that she knew what she was saying as we asked her questions that could be answered only by those words.

In our delight, we ran up a sizable phone bill as we called all of our family to tell them of this wonderful advancement. Then, about three weeks after we returned home to California from one of our periodic trips to Florida, another miracle happened. As I do each night, I kissed Rebecca good night and said, “I love you.” Only this time was different. She looked right back at me with her smiling eyes and said, “I love you.” To me…for the very first time! We cried together in joy.

Every injured child is unique. Each one differs in his/her innate abilities, home life, and family. They also have a personalized response to their brain injuries and treatments. Therefore, each child’s journey is formulated exclusively and while in motion.

A misstep here, and a successful shortcut there. And, while the final destination is relatively unknown, the child will most assuredly arrive at a far better destination than is otherwise possible or even hoped for if given the proper chance to overcome their impairments.

We know that one of the special ways our daughter was helped was through hyperbaric oxygen treatments. We will tell other parents, as we were told, that they should check it out.

We are now fully convinced that once the injured neurons have been re-established through HBOT, we must teach these unprogrammed neurons what to do and usefully integrate them into the nervous system.

For this reason, at the same time, we have continued to investigate, and sometimes incorporate, different therapy modalities and equipment into Rebecca’s care plan. How will history judge us? By how we have touched the lives of others.

Rebecca, in her very short, feeble, and challenged life (so far), will have greater stature and more memories than we could ever dream of. Not that she, herself, has accomplished so much, but that she has done so much after being given so little. Throughout her challenges and problems, she awakens each morning with a smile on her face, and struggles with Olympian determination at every therapy session. Every day she reminds us that her only purpose on this earth is to help others.

In time, history will view with favour the dedicated physicians and humanitarians, like Dr. Neubauer and his peers, for their lifelong and dedicated work conducted amidst controversy and disbelief. But, as a parent, I like to think they will be remembered not only for their great genius, but will also be remembered because they worked so hard to help a little girl whose heart and love are so great. Rebecca is a new girl! We are now halfway through her projected 200 hyperbaric treatments. Her SPECT scan demonstrates that her brain is metabolically active throughout. We are now going for “depth,” re-awakening of her penumbra neurons in the deeper parts of her brain. We are searching for the best way to integrate the remaining HBOT with movement therapies.

Our journey is certainly not complete, but I know that we are on the right path. I feel confident that we will reach our goal that Rebecca will have a very full, active, and independent life.

We now live a life of hope, expectation, excitement, and direction. Gone is our despair, broken spirit, and wondering about what to do to help her achieve her potential.

“Whom should I believe, and what should I do?” This is the most often spoken dilemma of parents of CP and brain-injured children. Inasmuch as very few physicians agree on how to “manage” these children, no wonder parents are confused. Even fewer physicians are in agreement on whether to “treat” the injury itself. The only “treatment” at this time is HBOT; all other therapies focus on treating the symptoms to “manage” the problem.

The truth is, treating neurologically injured patient is still very much in the dark ages of medicine. With all of the tremendous discoveries and advancements mankind has made in medicine, and in studying the human brain, we still have far more questions than answers.
As I’ve previously said, we have been exceptionally blessed with finding some of the most dedicated pediatric neurologists and physical therapists. In every case, they have worked wonderfully with Rebecca. Yet for many of her medical issues, we have had more questions and debates and conflicting answers from these exceptional practitioners than we’ve had answers. This has included defining and treating her seizures, deciding on the proper therapies, and, of course, whether or not to pursue HBOT.

We first saw an HBOT testimonial article in a popular South African magazine. But on the advice of medical professionals, we delayed pursuing HBOT for two years. Then, as we heard more about HBOT, we did serious medical research for another year prior to starting HBOT treatments. Today, I wish I had understood HBOT when Rebecca was born.

What should a parent do?

This is my advice to parents:

Research your child’s condition as quickly as possible. Among other things, investigate HBOT. Talk to a doctor who has had direct experience with it; don’t take the advice of a doctor who has only read about it. Then find the most experienced HBOT center to begin treatments. Talk to other parents and learn how their child has reacted to HBOT. Know your own child.

As Denise has often said, “No therapist, physician, neurologists, or other trained, dedicated person knows your child like you do.” Only her mommy, Rebecca, and I fully understand just what she needs. We will live the rest of her life with her challenges so we need to be actively medical care.

If we were to begin our journey again, from that fateful day, September 10, 1995, when Rebecca chose to live, our very first step would be into a hyperbaric chamber for treatments. This would have enabled us to most assuredly attain our destination more quickly and more directly…and much less painfully.

In closing this story, let me say that we will continue to give Rebecca hyperbaric oxygen treatments in a chamber for as long as she continues to show improvement.

We also send our best wishes to all the “friends of Rebecca,” and send them our prayers while they struggle on their journey to reach their potential destination.

Rebecca, Ed, and Denise Nemeth
April 29, 2001