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From: Ranfurly

My Story

Hamish Crossan ( Canterbury)

Hamish was diagnosed very late, because he always way off the charts for height and weight as a baby so there were no warning signs other than a bit of jaundice. Because everything else was okay people didn't worry.

Plunket and GP decided to take blood at his 3 month vaccine just to be on the safe side and his bilirubin was 330.

We were sent straight to Clyde Hospital, an hour away, for an ultrasound. All I can recall is the sonographer saying, "I just can't find his gall bladder". When I got home I googled 'baby no gall bladder' and came across information about biliary atresia.

The doctor rang that night to say 'we want you to go to Dunedin Hospital - pack a few things, you might be there a while'.

It was unbelievable - we went from having a happy healthy baby boy to three days later having him in hospital, with talk of liver transplants.

He was the first liver transplant that hadn't had a kasai first, because it was too late by the time he was diagnosed.

Hamish was number 26 when he first went on the waiting list, but his bilirubin was up to 930 and he was starting to get pretty sick.

We started looking for a donor and I figured because I was going to be in Auckland for three months with Hamish while he recuperated, I may as well be recuperating too, so I volunteered. We also needed my husband to stay and run the farm which meant it couldn't be him.

I went through a couple of weeks of testing - MRIs, xrays, heart testing, all sorts. I had a meeting with the surgeon about being a donor and was told there was a one in 100 chance of dying for Hamish, and one in 500 chance for me.

I was so prepared to do it; I just wanted to get it over with so we could move on. Hamish got so sick leading up to transplant (24 July 2007) - it was awful. The night before I had to just leave Gavin to deal with him because I had to go and get ready for my surgery. He was up all night and had a horrible night the night before surgery, with Gavin, his sister and my Mum there.

I went into surgery at 8am and was in for 6 hours. Hamish went in at 9.30 and was there for 8 hours. I woke up in recovery and one of the surgeons came to tell me it had all gone well.

It was two days before I was well enough to go across to Starship and see Hamish, which was really hard. He ended up with a lung infection and was having a lot of trouble breathing so it was a stressful time.

He was in PICU for 10 days and then went up to the ward. I was supposed to stay in hospital for 7-10 days but after just 4 days I needed to get out. In all honesty, on day three after surgery I thought I was going to die, after they took out the epidural. I had so much back pain, it was the worst pain I've ever had. I'm not that big on taking medication though, so I was back to panadol after just seven days.

I went back to Ronald McDonald House and by that time Hamish was back on the ward and I was back there with him. Hamish was on the ward for another three weeks and then back to Ronald McDonald House for 3 ½ months.

Because he was so sick, Hamish had lost his sucking reflex, so had to be fed through a nasal gastric tube. There was a lot of stress around his feeding because I just wanted him to eat, to put on weight and get strong again.

After the transplant, there were about 17 medications to get into him every day so one bonus of the feeding tube was that all the medication just went down the tube.

It was really hard going back to Ranfurly because the hospital was 1 ½ hours away and we'd just had so much one on one care that it was hard to get used to being on our own again.

Hamish came home with a feeding tube in his stomach because he had a blockage and that just became part of our normal life.

Because of our distance from the hospital, I trained up to do Hamish's blood tests so I can do them myself now and send the results off. Five years post transplant we still watch Hamish's blood results but I also know intuitively when he isn't himself.

All the issues we deal with now come from the anti-rejection medication. Hamish has a 70% higher risk of being diagnosed with skin cancer, he's had no live vaccines which means he's more likely to catch measles and mumps etc and chicken pox could be life threatening for him as it could damage his nervous system due to his lowered immunity.

EBV is another worry for us. Most people carry it and if it flares up, it usually results in glandular fever. EBV cells can very quickly turn to cancer cells so we regularly monitor Hamish's EBV levels.

Unbelievably, Hamish's EBV levels flared up the day I went into Dunedin Hospital to have Ryan (now 3). I got a call from Starship saying Hamish's EBV levels were 2 million and that we had to go up to Auckland. Luckily we first tried a change in medication which was more EBV friendly and his levels came down.

I was definitely only ever going to have one child so it was a real surprise when we found out we were pregnant with Ryan. When we first found out, it was really hard to take because we still had a lot to deal with for Hamish.

We were very protective of him and would only take him out when he was covered up. Having Ryan helped bring more normality to our lives. We decided to send Hamish to childcare when he was 3 ½ and we're lucky that because we live in a small town (of just 600), everybody is aware of Hamish and looks out for him.

Mums would ring me and say their child had a spot and he was with Hamish a week ago and they just wanted to let me know in case Hamish was at any risk.

Hamish hasn't been in hospital since he was two, although we've been actively monitoring him, including his blood levels. I know exactly where he's at - I can tell when he's 95% or 87%.

Now Hamish is in a little Catholic school of just 70 which he loves and everybody looks out for him. He's just a typical five year old, who loves being out on the farm, playing ripper rugby and riding horses. Him and his brother play rough, just like normal boys their age.

Hamish has this habit where he likes to put his head against my tummy like he knows that's where is liver came from. He tells everyone he's got a new 'liver plant'.

I made up a scrapbook with lots and lots of photos - I even gave the anaesthetist my camera during surgery to take photos of my liver and Hamish's liver, so Hamish can see everything that happened throughout the transplant. He hasn't shown much interest yet but they'll be there for him when he's older and ready to learn more about his transplant.

Hamish is the 13th person to receive a liver transplant from a live donor. When Hamish had his transplant, the UK they were just doing the first live donor transplant, so it shows how New Zealand is quite advanced with this surgery.

There seem to be exciting new developments with liver transplants all the time and we're hopeful that one day Hamish might be able to stop taking anti-rejection medication.

Tracy Crossan