What's wrong with Katie?

Katie was born on the 12th September 2001. Apart from having jaundice which can be normal for newborns she was what appeared to be a normal baby. Her jaundice didn't clear up after about ten days, but we were told "not to worry, as some babies can be jaundiced for up to three months."

It wasn't until she went for her six-week checkup at the doctor's that he thought she should have a blood test to see why the jaundice hadn't cleared up. The normal 'bilirubin level' (amount of bile) in a normal person is anywhere between 1-20.

We had a call the next day to go straight to Starship Hospital, as Katie's bilirubin level was 270 plus!

After days of tests, it was confirmed that Katie had Biliary Atresia.

We had no idea what Biliary Atresia was, initially it was explained that it was a blocked tube and that she would need an operation to 'bypass' the blockage. Though this is devastating enough to hear we thought it would be a routine operation.

At 11am one Friday morning we overheard a nurse talking to the doctor on the phone confirming Katie would need this operation on the Monday. As we were to be allowed home for the weekend (we were fed up with sleeping on the hospital floor) we accepted that we would have to bring Katie back on the Monday for surgery. As Katie didn't 'seem' ill we were keen to leave the hospital for a weekend at home.

The nurses said we had to wait to see the doctor, which we couldn't understand why we would have to wait another three hours for him to tell us to come back on Monday?

We sat in the waiting room for the three hours before the Consultant Paediatric Surgeon (Mr. Vipul Upadhyay) explained the depth of the problem. When "liver transplant" was mentioned, we went into shock.

We went home for the weekend not knowing if Katie could survive this, how successful a transplant is or anything. It was the longest weekend of our lives.

On the Monday, we returned to Starship. Katie had a four hour operation, which involves cutting out a piece of intestine and attaching to the liver to drain it directly to the bowel. This is not a cure, it buys a bit of time, without this operation (Kasai) life expectancy is around eight months.

Researching liver transplants, our hopes went up when we found out that they can be up to 97% successful. Our hopes went down again when we found that New Zealand is the worst in the civilised world for the number of organ donors we have!

I went back to the research to find out why we had low rates, and found a system badly neglected by the government.

This is where GiveLife.org comes in...

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