I was given a second chance at life

30 June 2009For 16 years, courageous teenager Amanda Stewart has endured an excruciating waiting game. Several rare and deadly diseases have lurked in her body, striking without warning. They have blinded Amanda and permanently scarred her kidneys and liver.

But six months ago the Hamilton teen was given a second chance at life after a successful double organ transplant.

"I feel healthier, more normal," Amanda, 16, says in almost a whisper. "I finally feel I have a future ahead of me." Although still in pain, Amanda manages a smile when she recalls the long-awaited telephone call that released her from her nightmare.

"Mum was at the supermarket checkout when I got the call that it was going to happen," she giggles. "I was so excited and nervous. Mum literally screamed."

But what Amanda was about to endure was no laughing matter. She was to become only the second child in New Zealand to undergo simultaneous liver and kidney transplants.

Amanda suffered from severe Protein C deficiency type two, a rare genetic trait where her liver did not produce this life-saving protein. The deficiency had begun to cause kidney failure. Amanda also had lupus anticoagulant, a condition that causes life-threatening blood clots. Amanda is thought to be the only person in the world officially diagnosed with this combination.

"My child is literally one in six billion," Amanda's mother Karen explains. "Had it been for any other reason than a medical one, I would be really pleased that she was such a rarity."

The 52 year old flicks through photo albums at their apartment in Auckland's Ronald McDonald house, where Amanda has been recovering from her transplants. They document Amanda's harrowing journey - one that began just weeks after Karen adopted her longed-for daughter.

"Gazing down at her on that first day, I'm so glad I didn't know what was around the corner and that very soon our lives would change forever," Karen says.

Unusual bruising first began to appear on Amanda's legs when she was a few weeks old, but it became serious at six months. At first Karen and her ex-husband Ian were accused of child abuse, but it wasn't long before doctors realised otherwise. "The bruises got bigger, deeper in colour and spread to other parts of her body - her buttocks, thighs, above the knees and legs," Karen says. Amanda was in complete agony.

Eventually they developed into hideous purple clots and the tissue began to rot.

Amanda underwent surgery where large amounts of flesh had to be removed. Skin grafts were placed to heal the wounds that left the tot with the first of many deep scars.

Ongoing Complications: "Amanda literally has scars from head to toe. Some are from operations scars, some are her grafts and many others are from clots that didn't need grafts but left lifelong marks," Karen explains.

Over the next 10 years, Amanda was placed on strong blood-thinning medication and was hospitalised several times with life-threatening clots. But in June 2003, the large purple bruises that had covered her body as a baby reappeared with a vengeance. Amanda's legs became gangrenous and she was operated on to remove the affected areas, but complications arose.

She was barely able to move, was not coherent and was in extreme pain, Karen recalls. "She hadn't eaten, drank or urinated and her weight had plummeted."

The day of her 11th birthday, after nine weeks in hospital and suffering intense pain following her surgery, the clots that had already badly scarred Amanda's body, then robbed her of 70 per cent of her sight.

"She only saw blurred visions of everything," Karen says. "Up to that day I'd had my bouts of tearful moments, but that day, my daughter's birthday, I just completely broke down."

Immediately after Amanda went blind, doctors started tests to see if she was eligible for a liver and kidney transplant. It would be five years before she was deemed well enough to undergo the procedure.

In December 2008, Amanda was finally wheeled into Auckland Hospital's operating theatre for the life-changing surgery.

"As the doctors wheeled her out of the door, I stopped dead and started crying," Karen says. "I knew Manda was a fighter but we were dealing with a major double transplant. I was scared and stricken with guilt that I was actually allowing my daughter to go through with it. I knew it was really in her best interests, but it still didn't make it any easier." It's now 25 weeks after the operation, and Amanda is making plans for her future. Beside her bed lies a sketchbook filled with clothing designs in bold colours and strokes - Amanda wants to be a fashion designer.

"Hopefully my eyesight will not limit me. If I can't be a designer then I would like to be an actress," Amanda says.

Amanda admits there are moments when she feels frustrated at not being able to enjoy everything girls her own age can. She's restricted to what she eats and drinks, and she can't play sports or swim. However, Amanda is determind to enjoy a normal life.

After years of trauma, Karen's proud her precious daughter is on the mend.

"The doctors informed us Amanda's liver is for life and no further transplants should be needed. Her liver will look after the kidney," Karen explains. "She should now live a carefree life. She's certainly deserved it."

Caroline Botting - New Idea Magazine (NZ Edition) 27/06/2009