A tryst with Stem Cells

For parents of children with incurable conditions, the uncertain promise of unproven treatments can far outweigh the risks.  For many of us, where mainstream treatment has reached its limits, the hope of even small improvements can seem enough to justify the high cost of travel and treatment.

In my research of emerging therapies, stem cell therapy looked very promising. We were following its progress for some time and had written to numerous doctors across the globe to get their opinion on the stem cell therapy.

All the developed countries treat it like new snake oil on the horizon to be approached with great caution. The strict clinical trial regulations in these countries means that there is little access to experimental stem cell therapies. Few countries like India, China and Russia who provide these treatments do so without objective measures for the therapies instead relying on testimonials, websites and the power of hope.

Being absolutely aware that this may lead us nowhere, we made a conscious decision to give it a go. The options we had in front of us were China or India. As the saying goes “a known devil is better than an unknown angel” we decided to go home country.

We contacted the doctor through the website; we fixed the dates, paid the advance and made our travel plans. While we were excited and hoped of a fruitful outcome, we were also quietly uneasy with the fact that this was a fairly intrusive procedure and also as to how Yatish would cope.

The day arrived and we landed at the hospital. To call it an orthopaedic hospital is a joke. Firstly it was located on first floor and the lift was in repairs and it appeared it was so since a number of years. While I was figuring out how I could carry Yatish up the stairs, two porters or ward boys as they call in India came down with an old army style cloth stretcher without any safety belts to carry Yatish to the first floor.

Now Yatish has dystonia, a form of dyskinesia, which causes involuntary muscle contractions that result in slow twisting or repetitive movements, or abnormal sustained postures, that are triggered by attempts to move.  If we put him on the stretcher, I was very sure he would fall out and I flatly refused. So I let them carry him instead.

Looking around the hospital I started feeling a bit queasy, along with cutting edge stem cell therapy there was every possible medical treatment available which you could think of in one floor space. As there was no looking back, we had to suck it up and bear and hoped it would deliver.

We all had stars in our eyes and had already started dreaming about the new possibilities that awaited us. Yatish himself was very upbeat and looking forward to the fact that maybe he could run and play, like other kids in the near future as promised on the website.

The stem cells are delivered through lumbar puncture. Yatish was to be given 6 doses of stem cells, 3 cultivated from his own marrow and 3 doses from donor cord blood cells within a short period of 6 weeks, which meant every week we were in the hospital. By the end of 4^th week Yatish had enough. I could not blame him, such horrible surroundings and repeated procedures would have broken anybody.

One such heart wrenching scenario was when three kids including Yatish who had just undergone the stem cell injections and were resting in the so called ICU. A man who had attempted to commit suicide by consuming poison and retching continuously because he was given an emetic was also next to these kids’ beds along with his noisy relatives. The kids were terrified and I finally lost my cool and threatened to take away Yatish, only then did they move the man.

Other instance which put us off completely was the total lack of hygiene. By the 6^th injection Yatish was protesting vehemently and refused to be taken to the operation theatre. So my husband and I volunteered to take him inside and what we saw completely shook us inside out. They had not even bothered to change the blood ridden sheets from the previous operation and when we protested, they started cold shouldering us.

It was like experiencing cutting edge stem cell therapy in a slum. Sorry I have no kind words to say about this experience and for the very reason I am not going to give the name of the hospital. I do not want anybody to go through this hell, it is not worth it.

Now the big question. Did the stem cell therapy work? The answer is NO.