Who To Trust?

Do you ever wonder about what goes on within the world of stem cells? For the vast majority it is a strange and confusing area of science that seems impossible to navigate. You can surf the Internet, watch the programs on TV, some folks will pick up a book on the subject but for most they never get past articles written up in their local newspapers.

Books on the subject are actually few; they are typically not geared for the lay person and often very expensive. Written articles in the newspapers tend to be misleading and are often filled with inaccuracies not to mention inflammatory phrases designed to catch and keep the readers attention. Television can peak one's interest with powerful sound bites and fascinating tales but typically do not have enough content to educate. That leaves us with the Internet.

These days' stories, web sites, articles and blogs of varied nature are spread throughout those invisible connections. You can find a host of varied information about stem cells on the Internet. The problem is without some basic knowledge of both science and medicine how are you to understand what you are reading. For most there is no way to separate the facts from the fiction, the good and true from the misleading and often disreputable. What is a person to do? Who do they trust to give them honest information in a world filled with scam artists who would take advantage of the seekers at every turn?

Well here I am and this is what I do. I am the person often trusted by parents, the injured, the sick, the families and friends of those in need. They come to me every single day with hope and fear. Their pleas come across my lap top screen on an hourly basis. All of them vulnerable with pain, loss, desperation and hope. Yet how are they to know who I really am as after all to most I am just a name with an email address that comes through the darkened space of an Internet connection. If I were in their shoes would I trust me?

Well the honest answer is vague, it is only a "perhaps" I suppose. For those in need they must trust someone in order to find help but deciding who is the most difficult part of navigating the stem cell world. I work with literally hundreds of patients, parents, family members and loved one's all in need and each one searching.

It is not surprising that the vast majority of my clients come to me by personal referrals. After three going on four years working with families and patients I have gained a reputation. My name, an unusual and not so forgettable one is spread all over the Internet these days. It can be found in chat groups, Internet support groups, blogs and news reports. Yet still despite that I often ponder how hard it must be for some to trust me. I am after all nothing more than a stranger to them.

An experience with a recent client of mine has left me turning this subject over and over in my head. She is a mother of three the newest child being less than two weeks old when she first contacted me. For her there was no personal referral just an Internet site. She came to me by surfing the net in exhausted desperation looking for help as all are when they finally make their way to me. Her tiny newborn son had just come home from the hospital after living through a ruptured umbilical cord during birth resulting in the loss of over 50% of his blood volume. This event left the newborn struggling for life and labeled with a most uncertain outcome.

How does a mother consumed with ripping pain and endless desperation find a safe, viable treatment for her 2 week old infant son who has struggled for life only to be left with a grave diagnosis and a certain brain injury. Late at night, numb with agony she surfs the net. Moving the mouse, repetitive clicks and several key strokes later she has entered into the strange world of stem cells. One more movement sliding the cursor across the computer screen and just one more quick click she finds herself at a website. http://www.stemcellschina.com/ . After pouring through the many sections, countless articles, stories and patient blogs she follows the path to "contact us". She types in a brief note asking for help.

In less than 24 hours she is conversing with me. Numerous emails go back and forth between her and I, multiple phone calls are made across the globe and in just a few days time she is buying tickets, obtaining emergency passports and getting Visa's all done to take her infant to China for stem cell treatment. Within just 8 days of that simple click to "contact us" she and her husband are boarding a plane with their now three week old son.

How did this happen? Where was the evolution of trust? How did she know I was the one? For most I think it is a sense. That untouchable feeling we have inside. I have asked her why she placed her faith in me and she simply states "I just knew I was lead to you".

I suppose in the end for most trusting someone over the Internet to help you travel half way around the world to receive stem cells is nothing more and nothing less than an inherent faith and endless hope. That said I still wonder if there isn't a better way. Late at night while lying in my bed waiting for sleep to overcome me I frequently find myself reflecting in the quiet darkness of my clients. Often I am wondering if my clients are doing the same of me. Do they wonder who I am and what I am like? I think they must. It is thus that after months of contemplation I have finally begun this blog. It is a look into my life, my work and my heart. Please enjoy...

The photo above is little Liam. It was taken in the NICU of Xiashan Hospital in Hang Zhou, China. Here at just the tender age of one month he was the youngest child to ever receive a stem cell transfusion. The cells were given via an intravenous transfusion. The line was placed into one of his scalp veins as they are larger, easier to access, safer and less likely to infiltrate during the infusion. The procedure was done in the Neonatal Intensive Care Unit due to his young age and to allow for extremely careful and watchful monitoring. You can see in the tiny bed with him is an infusion machine used to carefully, slowly and at a very steady rate infuse the amber colored solution of cells and growth factors into his tiny body.

The photo was taken by one of the registered nurses working in the NICU with Liam that day of August, 2007.

Liam's Mother Liz talks about her evolution of trust.

July 27, 2007 was one of the best days of my life. It was also the worst day of my life. It was the day my son Liam Michael was born. Such a paradox. My husband Steve and I sat in the hospital room listening to the fetal monitor, taking pictures and laughing…….we were going to have a baby. Our 3rd and most likely last child was on its way into the world. We didn’t know the sex but I was convinced it was a boy…mothers intuition. My pregnancy had been fairly uneventful except for a very strong, inexplicable feeling throughout that something was “just not right”. I was so convinced that I had even expressed my concern to my OBGYN a few weeks before my due date. My specific concern….the umbilical cord. I dismissed my fears as hormonally induced insanity. Little did I know that my fears were valid….mothers intuition. Due to an undiagnosed condition called Vasa Previa, Liam lost over 50% of his blood when my water broke. It took more than 13 minutes to revive him. His apgar was 0 0 0 2 3. He received 2 blood transfusions and began having seizures. The outlook was grim. This couldn’t be happening.

After a week in the hospital, Liam came home to us. With a calendar full of appointments and evaluations, all the doctors could tell us was, “you just have to wait and hope for the best”. That was just not good enough for me. Over the next few weeks, it became apparent that Liam was not a typical newborn. Surely there must be something that I could do! I had to help my baby.

I began my search, voraciously reading every article and bit of information I could about brain injury. I stumbled upon some articles on the successful use of stem cells in treating brain injury. Surfing the internet late into the night I began learning about various places throughout the world where stem cell therapy was available. My search eventually led me to a website about a program in China. I shot off an e-mail requesting more information fully knowing I was never going to take a newborn baby around the world to China for stem cell therapy, there were places much closer I could go, but I wanted as much information as I could get my hands on.

The reply came quickly. It was from Kirshner Ross-Vaden. She explained that she knew how I felt, and that she too was once where I was. Finally, someone who knew how I was feeling. I called her the next day. We talked about many things including the Beike stem cell program in China. I told her that 3 weeks in China with a newborn baby was just not feasible for me or my family. The very thought of it scared me to death. My research and discussions with Kirshner made me feel confident that umbilical stem cells were safe. But to go to China to do this? I was 3 weeks post partum after an emergency C Section, my newborn son was fragile and brain injured, I had 2 other children at home. I couldn’t possibly go to China for an experimental treatment that offered no guarantees. Perhaps it was Kirshners contagious enthusiasm and belief in the therapy, or the bond we shared because she was a parent of a brain injured child or probably a compilation of many things, but I felt I could trust her. She told me she would give anything to have had the opportunity to take her precious son Justin for stem cell therapy at such an early age. I believed her. She told me “you can do this”. Such a simple phrase but very empowering to me at the time. She truly cared. My gut told me this was the right thing to do….I had ignored my intuition once, and I was not going to do it again. My husband and I decided to take Liam to China for Umbilical Stem Cell Treatment. It was the hardest decision I have ever made.

Once we reached the hospital my fears slowly began to melt away with each passing day. The staff was very caring and were very careful with Liam. He received a total of 4 IV stem cell infusions over a period of 3 weeks.

Liam is now almost 3 months old. He is doing very well. People are amazed at his progress. I am extremely grateful that I came to know Kirshner. If someone else was on the other end of that e-mail, I don’t think I would have made the trip. I do not believe in coincidences. I was led to Kirshner for a reason. She has been an invaluable resource to me as I have been trying to navigate this lonely road of having a brain injured child. I can only imagine the pain of losing a child, and I admire Kirshner for taking her personal pain and loss and turning it into something positive for so many desperate families. I can only say thank you to her and her angel Justin. For without them both, I would probably be still surfing the web paralyzed with pain, trying to help my son.

The future is far from certain for Liam and because of his age many will argue that there is no way for me to know if the stem cells really helped them. I absolutely know they did. How? Mother’s intuition……..

Thank you Kirshner.