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 4th 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 6th 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.
