A donor saved me as I lay dying

16 February 2009Michelle Fisken will never forget the moment she was told her only child Hayden was going to die. 'I felt sick and remember thinking, "How come the doctors have to dictate the day and time he has to go? Why can't they just make him live until he reaches his 12th birthday?"

It was the news Michelle and her husband Tony had been dreading, and the worst yet in the harrowing emotional roller coaster the couple had experienced. Just weeks earlier, their seemingly healthy son was struck down with what was thought to be a simple case of the flu, but was actually a life-threatening heart condition.

Hayden was in need of an urgent heart transplant but was barely surviving on a machine that was acting as his heart and lungs. Unfortunately, the machine could no longer perform its life-saving function.

Hayden, who has a mild form of muscular dystrophy, was always a healthy, happy child and loved school. No sign of problems had ever been detected with his heart before.

'Although he struggles from day to day with some things, he's just like any other 12-year-old boy,'Tony says. 'He'd been physically well his entire life.'

The couple still can't belive how their son took such a sudden turn for the worse last February. It had been a great summer for the Fiskens, but it was during a weekend barbecue that Michelle notice her son wasn't himself.

'Hayden was very sluggish and began vomiting and suffering diarrhoea. We thought he had the flu and took him to the doctor. We were told to monitor how he was over the next few days. Never was there anything to indicate he had a heart problem.' Michelle says.

Hayden's 'flu' got steadily worse and with growing concern, his parents took him back to the doctor. It was the last time the trio would see their South Island home for the next three month.

Hayden's heart was beating incredibly fast and irregularly. He was immediately taken by ambulance to Invercargill Hospital and was diagnosed with cardiomyopathy, a heart disease which causes enlarged heart chambers. He needed specialist attention and an urgent heart transplant.

'I just couldn't believe what was happening,' Michelle says. 'By that time Hayden was deteriorating very, very rapidly.

'His heart was struggling so much he couldn't talk properly or move. He was still vomiting and had diarrhoea, which was a reaction to his body being unable to cope.

'I was saying, "Everything's going to be OK", but quite a few times I left the room and cried. Eventually Hayden was past the point of realising what was happening.'

Hanging On

The hospital put in an urgent call to Auckland's Starship Children's Hospital - New Zealand's only children's hospital that can cope with such severe cases. By nine o'clock the next morning, the family was set to board a Life Flight to Auckland.

We were told that he probably would die before he got to Auckland, says Michelle, who adds that Hayden's heart began to fail just before take-off. 'All I remember is saying to Tony, "It's not his time, it can't be."

When they arrived at Starship, Hayden was placed on ECMO (extracorporeal membrane oxygenation) a highly specialised machine that acts as a temporary artificial lung and heart. Doctors had begun an Australasia-wide search for a heart. Hayden could only be on ECMO for two weeks before risk of infection became an issue. If this occurred, Hayden would be ineligible for a transplant.

'We were stuck between a rock and a hard place,' Michelle says. 'If they took him off that machine, he wasn't going to live.'

Donor hearts are allocated based on size and blood-type campatibility, as well as the severity of a patient's illness. Not only did Hayden have a rare O-negative blood type, but the likelihood of finding a size match for a child was limited. Two weeks passed and no donor hearts were available.

Eight days short of Hayden's birthday, doctors said they had to take him off ECMO.

'They told us Hayden wasn't likely to make it,' Tony says. 'We sat with him until around 5pm then went out briefly for tea when our phone rang. It was the hospital asking us to get back immediately.'

When Tony and Michelle returned to Hayden's room, it was crowded with doctors and nurses. A donor had been found.

'I burst into tears. It was better than winning Lotto,' Michelle says.

No time to waste

Without delay, Hayden went into surgery. Two days before his 12th birthday, he awoke with his new heart successfully transplanted.

'When Mum and Dad told me I had a heart transplant, I thought, "What a relief!" Hayden says. 'I was just so happy that I wouldn't feel sick all the time.

'Now I can enjoy more active stuff. If people are kicking a ball, I can join in. It's given me much more energy and confidence.'

Tony and Michelle are amazed at their son's courage. However there are still times when they find it hard to cope with the trauma of how close they came to losing him.

It wasn't until afterwards that it hit us,' Tony says. 'That was the hardest time for me.

We definitely live for every moment now, but when I think about what happened, it affects me deeply. The help we got from so many people and from the wonderful doctors and nurses at Starship still brings a tear to the eye'. by Caroline Botting New Idea January 24 2009