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Fighting for Change in New ZealandBy Andy Tookey, givelife.org.nz
Katie was born on September 12, 2001. Our wonderful news was overshadowed by the events that had taken place in New York that morning. (New Zealand is a day ahead so it was September 11th in New York.) Katie was born with jaundice, but there was no concern as Bradley had had it, and we were told it was normal. To other people, Katie would have looked quite jaundiced, but as we saw her each day we didn't notice it so much. Her stool colors were pale yellow, but isn't that normal? It had been eight years since our first child so we couldn't remember. The main thing was that Katie seemed to be a normal happy baby. At six weeks of age, Katie went to our family doctor for her immunizations; the doctor noting that she still had jaundice recommended that she have a routine blood test to find out why it hadn't subsided. Later that day the doctor phoned me back to say that her bilirubin levels were high and he had arranged for a specialist to see her at Starship Hospital (a children's hospital in Auckland). Little did we know that this was going to be the start of a roller coaster ride of emotions that was going to change our lives forever, and set me on a determined track to try and secure the future of Katie and others in a similar situation. I also had no idea that I was heading into a political minefield. As well as Katie's condition, there was a family to run, employment to go to and I was trying to learn how to get heard. I was, and am, determined to change and shape the future of the lives of many people in New Zealand. It is an uphill battle, but slowly I'm making progress. All the tests seem vague now, as were the doctor's comments. We were told that there was a blockage and she would need an operation. This was traumatic enough news, as it would be to any parent to find their child needs an operation. On talking to someone else at the hospital whose child had an intestinal blockage it seemed straight forward enough to cut out the blockage. Friday morning, and we overheard the nurse on the phone to the doctor saying we would have to come in on the following Monday for the operation. We could take Katie home for the weekend, but we couldn't leave the hospital until he spoke to us, and he wasn't available for several hours yet. We protested the fact; we knew now that Katie had blockage and would need to come in for an operation and we wanted to make the most of the weekend with her. Why did we have to now wait several hours for the doctor to tell us what we already knew? They were insistent, so we waited. Finally, two doctors came to see us and started to explain the procedure, at some point the phrase that she would need a transplant came out. I know that many of you have been through the same situation, so you will be aware of how impossible it is to explain our feelings at that time. That weekend we had Katie home with us was the worst, as we had no knowledge of transplants or how successful they were. I slept all weekend; my way of dealing with stress was to bury my head in the sand. In the past, I had been unable to watch the TV documentaries about children with life threatening illnesses. I used to wonder how do the families cope? We were now one of those families. Katie had the Kasai procedure a few days before the eight week optimum cut off point, it would be some time before we were to find out if it worked or not. Following the Kasai her bilirubin levels went up into the 300+ points (the range in New Zealand for a normal child should be between 1 and 20). In the meantime, I started doing some research into the success of liver transplants and my hopes went up when I found out that a liver transplant has a 92% chance of success. My hopes were soon dashed when I learned that New Zealand was in the bottom four in the civilized world for the number of donors that it has at 10 donors per million population (pmp), compared with the United States at 26 donors pmp. I now set out to find out why. I discovered a system that has been badly neglected and under funded for many years. There is no public education on the matter, no commercials, nothing. It's no easy task to even find a pamphlet on the subject. I also discovered that ICU doctors do not have any mandatory training on the subject, therefore some shy away from asking families. Last year we had a potential of 102 donors, 33 families were not even asked. I managed to get the local newspapers on board, and from their articles, the national press and television companies covered the story of Katie and the problems of the current organ donation system. People were sympathetic, but we didn't want sympathy we wanted action to address the problems! Though Katie is doing fine through all this, by the time the government goes through all the red tape it could take years, at which stage she may be ready for a transplant. There are also many others dying because of the lack of donors, I know I can help them also. There have been many ups and downs during our fight with the government to change the system. The main problem being apathy. I have been chipping away at them constantly for the past year, and I have been lucky enough to get on board Lord of the Rings Director, Peter Jackson. His high profile makes it easier to get the message across. I can send stuff to the press weekly and it doesn't even get looked at. Peter can make a few comments and it's all over the papers. I can't thank Peter enough for his help; most of it is private help that is not reported in the media. This is Peter Jackson the concerned father, not Peter Jackson the film director. We've come a long way, and we've got a long way to go, but things are happening, and the governmental cogs are slowly churning. One of those aims now is to speed up those cogs before it's too late.
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