Katie turns one, against all odds

BIRTHDAY GIRL: Katie Tookey turns one today
but her parents Andy and Jan Tookey don't know
how long their little girl will be with them.
(PAUL RESTALL/North Shore Times)

Katie Tookey celebrates her first birthday today, a milestone her parents never expected her to reach.

The Mairangi Bay baby was born with the ducts in her liver blocked, a rare condition affecting one in 15,000 babies. The little girl will need a liver transplant, probably before the age of five and almost certainly before she is a teenager. But the emotional tightrope her parents Andy and Jan Tookey walk daily is that she could need a liver transplant at any time.

And the odds of there being a donor to give her one are slim. Since her diagnosis at six weeks, Katie and her dad have waged a constant battle. Katie to survive, and Mr Tookey to lobby the Government and health professionals to change the organ donor system to give his little girl a chance.

Mr Tookey, the technical support expert at Westlake Girls High School, is in the business of fixing things. But he can't fix his little girl, so instead he's determined to fix the organ donor system.

New Zealand has a shortage of donors which sees it lagging behind other western countries. A donor consent is given only with permission on a driver's licence.

Mr Tookey wants the Land Transport Safety Authority to set up a data base of donors so people can simply phone in their details. He also wants the Government to set up organ donor cards to be readily available for people to carry around with them. He's repeatedly written to all the country's MPs, sent them videos of Katie and lobbied the Ministry of Health.

But his pleas have largely fallen on deaf ears. One MP even told him to wait because they were busy with the lead-up to the general election.

Mr Tookey is also upset to discover that a year-long review by the Ministry of Health will consider developing policy options around tissues and organs, but won't directly deal with the shortage of donor parts and how to get them. Mr Tookey is starting a petition in the hope of forcing the creation of a select committee of Parliament to look at the issue. And his website, www.givelife.org.nz, has had 63,000 hits from people wanting to know more.

Seeing Katie laughing with joy as she plays with her birthday presents, a new swing and a sandpit full of fun toys, it's hard to believe how many sick-days she has clocked up in her short life.

Shortly after her diagnosis at the age of six weeks, she had a seven-hour lifesaving operation to remove a part of her intestine so the liver could drain directly into her stomach. The operation has a 50/50 success rate, but without the operation Katie would not have lived beyond eight months. Since then she's been in and out of Starship Hospital with a variety of childhood illnesses.

Her swollen liver makes her vulnerable to all sickness. Her liver is so engorged that she is unable to crawl or lie on her stomach, and physically she is the size of a six-month-old.

The Tookey family had booked to go away on a much needed five-day holiday last week, but ended up keeping vigil over Katie in Starship Hospital after she contracted a stomach bug. The next break Jan will have is maternity leave when the couple's third child is born in February next year.

They have an eight-year-old son, Bradley, who they say is older than his years because he has taken on the self-appointed role of Katie's protector. "The doctor told us there is a real possibility that Katie may die. And the doctor said, while we could never replace our little girl, unless we had another baby Bradley would end up an only child again," Mr Tookey says.

"The death of a child is something you can't even think about, you block it out. But it is always in the back of our minds that we could lose Katie unless there is a liver that can be donated to her when she needs it.

"She's so little, she's so precious to us. We just can't bear the thought of losing her."

Despite her many illnesses, Katie is a cheerful, chirpy little girl, who babbles and coos and tugs at the heartstrings.

Reproduced courtesy of the North Shore Times Advertiser -- www.stuff.co.nz