A Hamilton family is questioning the medical system after 50 visits to the doctor failed to diagnose cancer in their daughter.
Moana and Manihera Forbes say they don't know what more they could have done to try and find out what was wrong with their sick child.
Two-year-old Ka'iulani has a rare form of cancer - a stage-four neuroblastoma.
It was diagnosed recently at Starship Hospital, but her parents say they don't understand why their own GP and the Waikato District Health Board were unable to find out what was wrong a year earlier.
"Starship knew within 24 hours. They did two tests that were non-invasive - ultrasound and urine sample was enough to diagnose her," says Ms Forbes.
"To think that we could've had that done when she was one and not let this cancer grow for a year."
Since she was very little Ka'iulani would complain of pain. We now know she has a tumour in her stomach, which has wrapped around her spine. It's also spread to her legs and in to her skull.
As a baby she had bouts of diarrhoea, bloating and later black eyes. The family GP suggested the cause was colic, allergies to breast milk and food and a broken nose.
When they finally got a referral to a Waikato Hospital paediatrician, the hospital turned down their referral.
"They're the professionals. We can do what we can, but we go through normal pathways as parents and they reject her and she's still sick and the GPs don't know what to do with her. So we're definitely confused and at a dead end of where to go next," Mr Forbes says.
The Waikato DHB responded in a statement, saying Ka'iulani's symptoms "did not suggest anything of immediate or unusual concern and we asked the GP to keep an eye on these and let us know if she had not improved within two months".
It also said: "The information we had available at the time, from our own consultations, from the GP and from her medical records, did not point to a diagnosis of neuroblastoma."
In the end Ka'iulani's mum and dad looked elsewhere for help. They decided to go to an eye specialist. He noticed that the child's skull was actually being eaten away and they were instantly referred on to Starship.
"When we look at the symptoms of neuroblastoma and we look at what we were presenting to the GPs, she did have those symptoms, like two black eyes like you've been punched in the face, reoccurring black eyes, diarrhoea. When they say something like that it really makes you wonder," says Mr Forbes.
"I know it's rare, but they're familiar with neuroblastoma or how it presents itself."
The tiny two-year-old now faces a year of chemotherapy and an uncertain future.
Newshub.
