Accidental Events: Regenerative Medicine, Quadriplegia, and Life’s Journey
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Regenerative medicine has the potential to dramatically change modern medicine. In 2007 a tragic car accident resulted in a severe spinal cord injury to a family member. This event prompted the family to conduct a World Wide Web search for the latest in stem cell treatments. Alarmingly, the initial search resulted in discouraging news as no viable medical sites were identified. Continued efforts in 2008–2009 to find a treatment site resulted in the identification of one medical facility with authentic, proven success in New Delhi, India. The chapter details the family’s travel to India and the experience of receiving positive results via human embryonic stem cell treatment.
Regenerative medicine has been on the horizon for several decades with an acute awareness of stem cell and gene therapy approaches’ potential to transform modern medicine. This field is not without controversy, ranging from objection to the very use of stem cells to means and ways of researching potential treatments. Nonetheless, pioneering researchers have taken many different paths in their approaches to examine and explore potential treatments/application of stem cell treatments for various conditions. Still, these treatments/applications remain remote. We read of clinical trials, but to date most of the research remains in the clinical stages.
The potential of stem cells to transform medicine will be a reality one day, but for families needing help today or yesterday, the immediacy of needing to make decisions play a critical role. Parents of desperately ill or injured children, especially those for whom no established treatment exists, search for and are often willing to engage in experimental treatments with potential positive outcomes. When there is no hope, a glimmer can become a beacon in the tunnel.
Scared, the car is rolling, grabbing the seatbelt from around my neck. Darkness.
‘Hold on, honey, someone is coming to cut you out. They’re almost here. Stick with me’.
‘She is bleeding from her head right here’.
‘Sweetie, we have your phone, who should we call?’
‘The flight is on its way to take you to Baylor Hospital’.
Awake. Intensive care. Screaming loudly in my head that the stupid doctors don’t know. Don’t know.
On 25 August 2007, the most agonizing, heartbreaking day of my life, I became a quadriplegic. A multicar accident and rollover resulted in massive trauma to my spinal cord, causing it to stretch and tear from C-5 to T-8. The severity of the damage left me paralyzed from the armpits down. I had very weak, limited use of my right arm and no control of my left. The damage was so severe that I actually died as my vital systems failed at the accident scene, and I had to be resuscitated.
The shock, disbelief, and despair of awakening to such news were devastating. This deep despair has the potential to rob one of all will to move forward. I did not allow myself to think there was no hope. Nonetheless, I was in Baylor Hospital, Dallas, Texas, attached to medical machines keeping me alive and stable for ten days. Within three days of being in intensive care, I underwent a 12-hour spinal surgery to stabilize my injuries as best as the surgeon could. Following the surgery, a drainage tube was left installed to control the fluid buildup within my spine. I was afraid as I remained there for days, hooked to medical lines and a respiratory machine that breathed for me. Ultimately, I was discharged and transferred from intensive care to the rehabilitative ward of the same hospital.
The surgeon and rehabilitative doctors said I had no hope for recovery. They said I would never walk again. They said my spinal cord was stretched, torn, and dead in many areas. Their focus was on survival and then physical therapy to strengthen and improve the movement I still had. They said there were no medical treatments here or abroad. No hope to help me walk again. The best outcome they believed was that I could regain use of my arms and be able to conduct minimal feeding tasks.
However, I have been a fighter my entire life. I arrived in this world two months early, was discharged from the hospital at three pounds 12 ounces, and have always thrived by being challenged and pushing boundaries. I am independent, goal oriented, and persistent. A challenge has energized me throughout my life. These qualities reemerged and supported me as I then faced the greatest challenge of my life. In rehabilitation, I worked hard and struggled to gain strength and arm movements. My focus to improve each day sustained me, but I didn’t accept that I wouldn’t walk again or get better results than just the use of my arms.
My parents and I researched the web. We discovered that stem cell treatments were actually being conducted in various countries around the world. However, the doctors told us that all stem cell treatments were quackery and we were warned about dangers of stem cell outcomes such as teratomas or cancer and even the fraudulent use of unknown substances being injected. So, fearfully, we backed off from this idea.
At the time of Shannon’s injury, we were but vaguely aware of stem cell treatments. Sporadic news accounts were published, but we had not paid much attention. Much of what was published at the time of her accident was not encouraging. Traditional physicians in the USA were very suspicious and against stem cell treatments, and Shannon’s physicians repeatedly told us there was no hope that she would regain much after the first 12 months through any treatment program. One physician told her stem cell treatments were fraud and no one was conducting authentic treatments any place in the world. Like many parents facing such a devastating injury, we did not absolutely accept that perspective and conducted our own research, but we were cautious. We extensively researched online to find any help for someone with a spinal cord injury. Our initial research efforts were not encouraging: in fact, the results were dismal. We turned to other areas for help at that time.
Shannon’s father, as a former coach, believed strongly in ‘muscle memory’ and the importance of exercise, especially repetitive exercise. With his coaching background, he believed that 100 repetitions of an activity instead of 50 would be an ideal practice program. Therefore, any new skill certainly had to be practiced regularly and repetitively. With such a perspective, it was no surprise that his research and strong focus led us to a special rehabilitation program entitled Project Walk, in California, USA. Project Walk was particularly interesting to Shannon and her father due to the emphasis on an extensive exercise regimen. The program also targets intensive assistive exercises to aid in recovery, increased mobility, and movement in spinal cord-impaired clients. Five months after the spinal cord injury, in January 2008, Shannon and I traveled to California to allow her to participate in Project Walk for a month. It proved to be a valuable, positive, and surprisingly informative trip.
Project Walk proved to be an exemplary assisted-exercise program, and Shannon gained strength and endurance during our month there. But the absolute highlight of the trip was meeting a young man who had been to India for stem cell treatments. This was incredible, amazing, and unbelievable news to us. After being told there were no stem cell treatment programs in the world, we were talking to a family who had attended and received stem cell treatments! ‘M’ had a spinal cord injury similar to Shannon’s, and he and his father were excited to share their experiences in India and the positive outcomes. It was almost unreal that we were receiving the exact information we had spent months trying to acquire. We immediately began to research the information and found patient blogs, published information, and testimonials.
We are forever grateful to these new friends for introducing us to the work of Dr. Geeta Shroff, of Nutech Mediworld in New Delhi, as she has been engaged in stem cell treatments since 2000. Our initial research had not revealed her clinic, and we subsequently discovered that much of the information on the internet was firsthand because the clinic does not advertise or market the clinic and treatments. Nonetheless, we had a well-documented lead to an innovative stem cell treatment facility.
In January 2008, after my release from Baylor Institute for Rehabilitation, my mother and I went to Project Walk for a month. Indeed, it was a special place. The therapists who worked with clients were athletic trainers with a focus on activating muscles and movements that were not working! Their goals and strategies were aimed at triggering nonresponsive movements and increasing mobility. The training was rewarding, and I gained some recovery. However, the ultimate highlight of our journey to California was meeting a fellow quadriplegic, ‘M’, who had gone to India for stem cell treatments. Specifically, he had received embryonic stem cell treatments from Dr. Geeta Shroff at Nutech Mediworld in New Delhi, India! Serendipitously, my time at Project Walk was destined to lead me to embryonic stem cell treatments. Five months after my car accident, I was face to face with a young man who had not only survived stem cell treatments but who also shared details of his improvement following treatments. ‘M’ was upbeat, positive, and encouraging about his experiences and treatments. Could I dare to hope?
As 2008 continued to pass, Shannon again started researching Dr. Shroff’s work and outcomes and contacted as many former or current patients as she could to discuss their treatments and outcomes. She was hopeful from speaking to others but was fearful of the warnings from traditional physicians. Toward the end of the year, I told Shannon ‘enough’. She had found all the published information and spoken to numerous patients, and it was time to make a decision and take action.
During the remainder of 2008, I continued to work out, acclimated to venturing from the house, returned to work part time, learned to overcome obstacles, and tried to recover my health. I also became serious about researching stem cell treatment options. At that time, most of my online searches did not result in positive information about stem cell treatments. The scientific literature was replete with dire warnings of possible negative outcomes, and the major concern was that stem cells would cause cancer or develop into a cystic teratoma. There were warnings of unethical stem cell treatment facilities in unregulated areas of the world, and warnings abounded that clinics were in business just for profit without regard to patient safety. The research was not encouraging, and my parents and I resolved to attack my injuries throughout the remainder of 2008 with exercise and the promise of improvement from Project Walk.
But I could not stop thinking about stem cell treatments. The human-science aspect of stem cells just seemed the most logical route to help heal my spine. I refocused and decided to get stem cell treatments. I once again conducted extensive reviews of current treatment protocols in published literature or online venues and found five countries offering treatments. I read, contacted the clinics, and attempted to locate patients who had received treatments. I had few concrete responses from patients of most of the clinics but was able to meet with a young man who had gone to Germany for treatment. He had some small, positive results but nothing to help him regain motor function. He did not plan to return to Germany for follow-up treatments.
My research quickly became refocused on Dr. Geeta Shroff, New Delhi, India. Not only had I actually met a current patient of hers, but also I had received numerous responses from other patients of hers. It became readily apparent that the only authentic treatment option in the entire world was Dr. Shroff in India, and I continued to extensively review the numerous postings of her past and current patients. She had been utilizing her protocol for almost a decade, and positive results were well established.
But still, I was afraid. Going to an unknown clinic and foreign country and as a quadriplegic was a daunting task. But as a family we decided it was my best chance. In early 2009, I contacted Dr. Shroff to discuss my case and seek admittance to her program. She was amazingly supportive and thorough in her response, so I submitted the required medical records and anxiously waited for a response. Positive news soon arrived: I was accepted as a patient.
We had engaged in an extensive review of Dr. Shroff’s work and concluded it was at the cutting edge of the regenerative-medicine realm. We recognized her as a medical pioneer, an impassioned visionary with a proven track record of improving desperate lives. We were encouraged and willing to participate because we found her methodical and documented approach consistent with clinical case studies. The methodology, medical facilities, and staff were professional. Most important, Shannon had communicated with many of Dr. Shroff’s patients before engaging in treatments and was fully informed of the potential outcomes and expectations. Dr. Shroff kept Shannon and us informed and updated on all aspects of the spinal cord treatment approach. This honest exchange of information and the professional safeguards in place were a foundation of our decision and commitment to travel to India and seek treatment. We determined this was our only hope in the entire world. That was a daunting thought—the entire world—but we believed and placed our precious daughter in Dr. Shroff’s care.
The next phase of our lives involved fundraising for the full three months of initial treatment. This was a bit daunting in 2008 and 2009 as well: many people were and are against stem cell treatments. We shared our story with a few select friends and family, and soon, very soon, we had an energetic team that set about forming fundraisers to support trip.
Journey to India
We arrived in India at the end of January 2010 and stayed until mid-April. We traveled with six checked bags, six carry-on bags, and Shannon’s wheelchair—no small task. After a 24-hour flight, we were feeling quite alone and exhausted, but as soon as we emerged from the airport baggage area, a staff member from Dr. Shroff’s clinic was holding a placard with Shannon’s name. We were safe and ready for our next phase.
Our next phase was the shock of how small Indian taxis are, but our driver managed to store all our bags inside and on top of the cab. As the first few days unfolded and we went to various medical clinics for essential MRIs, X-rays, and so on, we experienced the ingenuity of Indian people to solve all and any dilemmas a girl in a wheelchair might encounter. This was my first trip to India, and I encountered many shocks as we became immersed in amazing, incredible India. The beautiful, colorful clothing, rich various languages, spicy food, unbelievable traffic, and open markets were so very different from our home. We were in awe of the country, but the offers of help from everyone we encountered made us feel not quite so far from home.
When we first arrived at the clinic, in the wee hours of the morning, Dr. Shroff’s professional team took over. Shannon was immediately seen by the nurses, and a doctor came after breakfast. Dr. Shroff greeted Shannon that morning with the medical team responsible for Shannon’s treatments, and my fears completely disappeared. I knew we were safe, in a professional medical clinic, and Shannon was receiving the most advanced stem cell treatments in the world. All our care, food, and lodgings were included in the treatment cost so that we didn’t have to worry about daily events. Dr. Shroff used her professional medical knowledge of more than a decade to design stem cell protocols for Shannon and others under her treatment. Shannon received stem cells via muscle, infusion, and spinal cord as well as topically when needed. In addition, she had two sessions of physical therapy and one occupational session daily. This approach was holistic, with concerted care given to all aspects of her recovery.
Immediately after her first spinal injection, Shannon had new sensations in her toes, legs, and back. Words do not and cannot adequately express the joy, reverence, and deep gratitude when the hope of healing becomes a reality. Hope is hard to face when there is no treatment, but with the first spinal injection and Shannon’s response, hope was transformed to reality.
I was given the best care in a clinic with full-time medical staff on site 24/7. The treatments began the very first full day I was there, and the full protocol was explained in depth, preparing me for what was to come. In addition to embryonic stem cell injections, I was engaged in daily specific, targeted physical-training sessions directed by doctoral physical therapists, with the exception of the days I received spinal injections and on Sundays.
When Shannon arrived for her first treatments, she was still using a seat belt to keep from falling out of her wheelchair, and she was supported by armrests and side panels (to keep her hips aligned). As a quadriplegic, she was paralyzed from the chest line down and could not remain upright without using armrests. She was in a pushchair when we arrived, but I had to push her most of the time because she didn’t have the strength or endurance. Also, standing would cause her blood pressure to crash and she would faint. During the three months of treatment, Shannon gained enough core body strength to be able to discard the seat belt! Her back muscles had already been stronger, but her abdominal muscles began triggering as well. This was and is a major milestone for a quad, as many are not able to get out of a power chair into a pushchair. She was also using back muscles to aid in upright support, her muscle tone was increasing in all the affected areas, and her arm strength was increasing. She was showing improvement in all muscle groups. She was also able to stand upright with leg and abdominal calipers for longer and longer periods. Even before we left in April, we were planning a second trip for later in the year. She was experiencing so many positive results that we couldn’t leave without making our plans to return.
We returned in September 2010 and have gone back at least once per year, since with the exception of 2016. Shannon has made nonstop progress since the inception of treatments. She continues to gain and will remain a faithful patient until she is walking. We are told that stem cells go to injury sites and have the potential to last up to five years. She has the same sensations she had on the first trip and has added many more. Although they vary in intensity, they remain in all areas from top to bottom. Her core body strength allows her to engage in physical training designed for paraplegics rather than quadriplegics. She started upright physical therapy in a full body brace and calipers and can stand without a body brace and move her legs. She also has balance, can use weights with upper arms and core, and engages in facilitated walking.
We all have life journeys that are impacted by others. Sometimes we are very much aware of the influence that others have, sometimes not. Our family is acutely aware, and we are beyond fortunate to have had Dr. Shroff as a primary healer for our family and daughter. We have witnessed and experienced the healing power of her pioneering work and stem cell protocols.
Today, Shannon works three-quarters time. She dresses herself, does her hair and makeup, gets into her adapted van, transfers to the driver’s seat, drives to work, drives to physical training, drives to wherever she wants to go, and drives home at the end of the day. Her life has become as normal as it can. She still uses a wheelchair, but her total body recovery has been phenomenal, and walking solo remains her final goal. She doesn’t give up.
I have never looked back and know the decision to engage in stem cell treatments has transformed my life. My regained muscle recovery, mobility, endurance, and overall health are a direct result of the stem cell treatments. I work for 75 percent, drive, dress myself, and go wherever I wish. My independence is a blessing.
The decision to participate in embryonic stem cell treatment was based on extensive research. My family and I came to the realization that Dr. Shroff, her clinic, and overall protocol were unique in the world at that time. The rigorous medical attention to treatment protocol was a deciding factor for me. Even today, I am planning my next trip to India, as I believe there is no other place in the world to help me.