The Research

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Chapter 1 – Part 2 of the book My Isaac to the Lord

Continuation of April 1997: The Diagnosis

In the opening instalment, Chapter 1 Part 1, my baby Nicole was diagnosed with biliary atresia, a very serious and rare liver condition that was fatal within one to two years and the only hope was a liver transplant, which was a rather new and uncommon procedure in this part of the world.

Nicole was still lying on the bed in Dr Lim’s consultation room, as good as an angel, blissful­ly unaware of the furore she had created, the heartache that had welled up in me.

I swept her into my arms and hugged her tightly. I cried into her tiny ear, “I’ll never let you go. I won’t let you die!”

I could see that Dr Lim was affected for she tried to find words to comfort me.

“There are a couple of things we can do…a Kasai, liver transplant…,” Dr Lim said.

Paediatrician Dr Lim Suan Tin, better known as Dr ST Lim, of Assunta Hospital

Knowing there was hope for Nicole helped pull me together.

Dr Lim immediately made a call to fix an appointment for us to see Dr Goon Hong Kooi, a paediatric surgeon from Subang Jaya Medical Centre (SJMC)* who has a week­ly clinic at Assunta Hospital.

Dr Goon Hong Kooi, Paediatric Surgeon.

When I left the doctor’s room, I saw Eric. I broke the news to him.

“Let’s go home,” he said quietly.

It was a silent drive home, each of us locked in our own sanctuary of grief.

That night, I was determined to find out more about the dreadful condition called biliary atresia.

The only way I knew how was through surfing the Internet, an exercise that I should never have undertaken in my raw state of mind.

(Note to readers: Not advisable to seek medical information online when in a vulnerable frame of mind, especially with so much of unverified information out there now. Best is to get it directly from medical experts.)

Information was aplenty, but all of it grim.

Liver transplant was barely out of its infancy; living-donor trans­plants had only been pioneered in the early ’90s. With the procedure being so recent, doctors are never certain what the life expectancy of a liver transplant patient is – whether it is the same as that of a normal person or much shorter.

As I devoured page after page of information, 1 learned that biliary atresia is a condition where the bile duct is absent. Thus, bile and toxins cannot be drained from the liver to the intestine and out of the body system. The liver becomes progressively damaged until there is complete liver failure. Then comes death.

The life expectancy of a victim with biliary atresia is one to two years.

The cause, until today, is still unknown.

The only treatments are, firstly, a Kasai operation which, in most cases, is unsuccessful, and secondly, a liver transplant.

Medication is required for life.

After digesting all the hard facts, I was over­whelmed by the severity of Nicole’s illness.

That was Day One of what was to be a journey of heartbreak and despair, of joy and triumph.

*SJMC is now known as Sime Darby Medical Centre.

Yet you brought me out of the womb; you made me trust in you even at my mother’s breast.

From birth I was cast upon you; from my mother’s womb you have been my God.

Do not be far from me, for trouble is near and there is no one to help. 

(Psalm 22:9-11)

I constantly said the above prayer on behalf of Nicole when she was ill.

Next: In Chapter 2, the hit and miss of the Kasai operation.