In his lowest moments, little Iharaia Simmonds would plead with his mother to let him die. “It broke my heart,” says Sam, 35. “My son has endured a lifetime of suffering and he’d just had enough.”
Eight-year-old Iharaia has spent most of his childhood either in hospital or recovering at home. Since he turned five, he’s only been well enough to attend just 10 days of school. The Wellington boy is thought to be the only child in New Zealand with Budd-Chiari syndrome, a rare liver disease. It means that clots constantly form in his hepatic veins – which carry blood out of the liver – causing swelling and abdominal pain. Iharaia also has myelofibrosis, a serious bone marrow disorder that can cause severe anaemia, weakness and fatigue.
Since his diagnosis at one, Iharaia’s childhood has been put on hold. “Doctors have always told me just to enjoy the time I have with my son,” says Sam, who also has five other children, Terehia, 17, Amiria, 15, Wiari, 14, foster son Beejay, 16, Sam, 12, and Maiden, 10.
But after a lifetime of ill health, there is finally hope for Iharaia. While his first liver transplant at age two wasn’t successful, leading doctors to believe there was little more they could do for him,
in March, the plucky battler was given a second chance – and a second transplant.
Now, for the first time ever, he is beginning to feel like any other normal boy. “Iharaia is smiling these days and has more energy,” tells Sam. “He is a different child. We are not out of the woods yet, but the future is looking good. I think someone up there must be looking out for Iharaia.”
It was around the time of Iharaia’s first birthday that doting mum Sam noticed her son’s stomach protruding. “He looked like he was pregnant and his tummy was covered in purple veins,” she recalls.
Doctors began to do tests and at first suspected he had leukaemia. Says Sam, “He was my baby – I cried and cried.”
Iharaia was referred to Starship hospital in Auckland, where it was eventually discovered he had Budd-Chiari. After his diagnosis, Iharaia ended up staying at Starship for six months – the first of many stints at the hospital.
Sam took the youngest children with her to care for Iharaia in Auckland, but was forced to leave her older kids behind with other family members. She says Iharaia’s father, Terua Poko, has been a big support. “It’s divided the family and been hard on my kids, but all I can do is my best,” she tells.
While at Starship, Iharaia underwent the first of many surgical procedures to help unblock his veins and was put on blood-thinning medication to prevent further clots. He would tire quickly and often spent most of the day sleeping. And because of his condition and the medication, he bruised easily and suffered constant pain.
“It hurt for Iharaia to be cuddled. It hurt for him to be picked up,” recalls Sam. At least once a month, her son’s stomach would begin to swell again – a telltale sign there were more clots in his liver. “He got so sick, he went yellow and he could hardly stand,” she says. “At times, he was delirious and didn’t make any sense. It was really scary.”
Doctors told Sam a liver transplant was Iharaia’s best chance at survival. After his first transplant in 2009, things initially looked good. But seven months later, Iharaia was again struggling to wake up. The Budd-Chiari was back and this time, he was also diagnosed with myelofibrosis.
Sam was told there was little chance of her son receiving another liver and Iharaia was quickly becoming too weak for surgery. “I began to talk to him about life and death. He knew how sick he was.”
But in March this year, Sam was out shopping in Lower Hutt when she received a call that would change Iharaia’s life forever. His specialists wanted to put him back on the transplant list.
Unfortunately, the renewed hope came at a price. Sam was told Iharaia had a 50/50 chance of coming through surgery and the family had to decide if the major procedure could go ahead. “It was the hardest decision I’ve had to make,” tells Sam. “If the transplant ended his life, it would be because of me.”
She decided to take the risk. On the morning of April 8, the family received a call to say doctors had a new liver for Iharaia. “We were on a plane to Auckland by 1pm and he was in surgery by 5pm,” she says, adding that her youngest son was brave beyond his years. “As they wheeled him in, he gave me a thumbs-up and said, ‘We’ve got this, Mum.’”
The transplant took 11 hours. Sam says it was “the longest night of my life”.
While Iharaia developed post-transplant diabetes and has suffered from nerve damage in one arm since the operation, overall he is doing well. Further down the track, he may also face a bone marrow transplant to help combat the effects of his myelofibrosis.
For the first time, says Sam, her family is starting to plan for the future. She’s looking for a new house so she can have all six of her children under the same roof again. “The fight is not over yet, but so far so good,” she smiles, adding that Iharaia is talking about starting school again.
“No-one can know what the future holds, but for now at least, Iharaia has been given the chance of just being a normal child.”