FOCUS
The Biggest Fight
of Their Lives
By Farhan Shah
Standing in the red
corner, weighing a
combined total of more
than 300 pounds is the
Sirucek family – Cole
Sirucek, Grace Park and
baby Rand – and in the
blue corner, at just a few
grams, is the scourge of
biliary atresia.
I am sitting across Cole Sirucek
– former investment professional
with Temasek Holdings, founder of
EPIC MMA Club, one of the largest
fighting gyms in Asia, and co-founder
of DocDoc, a revolutionary online
healthcare concierge – and he is
slowly unbuttoning his shirt in front
of me. A few heartbeats later, I see
the giant angry scar running vertically
down his chest where the surgeons
carved him open. The scar is a
permanent reminder of perhaps the
most painful episode of his life, and
one he willingly signed up for.
But, the genesis of the scar was about
a year back, the culmination of a series
of events that led Cole to that moment,
naked from the waist up while
lying down and looking at a bunch
of silhouettes in operating scrubs,
wondering how he found himself in
this situation.
Cole and his wife, Grace Park, had
brought their newborn daughter, Rand,
for a routine medical appointment.
Rand had just turned two-months-old
and, by all accounts, was happy and
healthy. “I thought the hardest part,
the delivery, was already over. Rand
had passed the APGAR test and had
almost reached the 100-day mark.
In Korea, where I am from, this is a
landmark occasion. It is a throwback
to a historical period when a baby’s
survival rate dramatically increases
after the first 100 days and we would
celebrate it with feasting and parties,”
says Grace.
Unfortunately, when the medical test
results came back, the doctor had
bad news. Rand was suffering from
biliary atresia, a rare congenital liver
defect that occurs when the common
bile duct between the liver and the
small intestine is blocked or absent.
As a result, Rand’s body could not
safely transport the bile – a waste
by-product – away from the liver,
which would eventually result in liver
failure. Children who do not have this
condition treated rarely survive beyond
their second birthday.
The clock was ticking down for
Rand and her parents. Babies with
biliary atresia only had a small
window of opportunity to undergo the
14
Family & Life • Mar 2014
Kasai portoenterostomy, a surgical
treatment that helps to drain bile
from the body, before the prognosis
becomes bleak. The later the operation
is done, the lower the baby’s chances
of survival.
“Let me tell you, the first thought
that went through my mind when the
doctor broke the news to us was:
‘Second opinion!’” Cole says, laughing
loudly. It was a brief moment of levity
in an otherwise grim situation and
it would prove useful in the coming
fight ahead as Cole and Grace moved
quickly, calling everyone in their
phonebooks to find out who the best
surgeon in the world was for this
delicate and risky operation.
Everyone they knew in the medical
industry told them that their best
bet was to head to Japan and find
Dr Koichi Tanaka, a leading pioneer
in living-donor liver transplants
and one of the central figures who
helped advance liver operations to its
current state today. The only problem
was getting hold of such a busy and
influential figure. Salvation came in the
form of a family friend, a Singaporean
surgeon who worked alongside them
for a charitable initiative a few years
back. “Cole and I ran 250 kilometres
across the Gobi Desert once for
charity. We managed to raise about
US$75,000, all of which we used to
fund heart surgeries for children in
Vietnam and China who could not
afford it. The doctor whom we worked
with helped us get in touch with Dr
Tanaka,” Grace reminisces.
Dr Tanaka agreed to carry out the
procedure and a whirlwind plane
ride later, Cole and Grace found
themselves in Japan on 26 March
2013, pacing outside the operating
theatre while Dr Tanaka and team
operated on baby Rand.
To understand the difficulty and
magnitude of this operation, imagine
opening up the chassis of your laptop
computer and looking at all the small
parts that make it function. Now,
imagine all of these parts moving and
pulsating as though they are alive, and
you have to make your way through all
of them without accidentally dislodging
any of them to get to a minute wire, no
more than 6 millimetres in diameter.
Then, you have to carefully move this
wire and attach it to another vibrating
part before withdrawing your hands
and putting everything back together
as it once was.
Baby Rand was wheeled out of the
theatre, none the worse for wear
thanks to the skilful hands of Dr
Tanaka. Yet, that was not the end. The
Kasai procedure is only a temporary
stopgap measure to allow the baby’s
body to function normally for a short
period of time and most importantly, to
grow bigger, so that a liver transplant
could be carried out in the near future.