While most children awoke on January 1 to welcome in a bright new year little Aria MacDonald was in a near-coma, desperately ill in an American transplant unit.
The Auckland three-year-old suffers from a rare condition that prevents her from digesting food. That was made worse late last year by rapid liver failure.
With a $2.5 million grant from a government health-treatment fund – which will pay for four life-saving organ transplants – she and her family were whisked to the Nebraska Medical Centre in the United States in December.
But as they waited for organs to become available, Aria's liver failure worsened, leaving her in a near-coma on New Year's Eve.
Her mother, Anita MacDonald, said toxins in Aria's body normally processed by the liver started going to her brain, sending her "a little bit crazy".
A breathing tube was inserted down her throat and doctors told the MacDonalds to get their family over because it was unlikely she would survive.
"She just slept for three days, it was really awful," Mrs MacDonald said.
"She's still a very sick little girl but she recovered from that ... it was completely amazing. She's pretty happy, she has good days and rough days."
Her aunt and grandparents had flown from New Zealand and the family hoped an organ donor would come through in the next week.
Though most children at the top of the US national organ donor list can receive transplants in hours or days, Aria has been waiting for more than a month. She needs a new small intestine, liver, kidney and pancreas, all of which have to come from the same child.
The situation is further complicated by finding a donor compatible with her rare O- blood type.
Mrs MacDonald said every day without the transplants, Aria's health suffered but she was high on the transplant list.
"It's still touch and go. We're fairly confident we may get something any day now but who really knows," Mrs MacDonald said.
Aria was born with intestinal aganglionosis and has to be fed intravenously with a special food which damages the liver.
After being diagnosed at two weeks old, doctors in New Zealand told her parents not to bother with any transplants as she would live for only six months.
Her mother, and father Hamish, refused to give up and today were looking forward to a happy end to their three-year ordeal.
"We're just waiting for the donor and the family to make a difficult decision at a difficult time, which is a big deal really," Mrs MacDonald said.
- © Fairfax NZ News
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