Today, the family have won an major apology from Counties Manukau District Health Board after the country's health watchdog, the Health and Disability Commission (HDC), found failures in the girl's care.
Nearly four years after the delayed treatment, an HDC report reveals doctors failed to "think critically and respond with greater urgency to the child's emerging and concerning symptoms."
These failures meant the DHB was found in breach of Code of Health and Disability Services Consumers' Rights and as a result was forced to make changes to improve its care.
It comes after the parents complained to the HDC about the delayed diagnosis.
"I don't want any other child to go through what our daughter had been through ... If a patient keeps on coming back to you, it means something is wrong. Perform all the required tests, and think out of the box," the girl's mother said.
Names of the doctors and family were not given in the report, the HDC citing privacy concerns. It is also not clear from the HDC report if the girl's outcome was affected by the delayed diagnosis.
The family's story started in February 2017.
At age 5, the girl was experiencing abdominal pain, vomiting and severe headaches. Then she developed symptoms including slurred speech.
Medical records show: "[Miss A] is a 5 year 8 month old child with recurrent chronic abdominal pain. There may be a component of abdominal migraine although there is also an indication that there may be a food related cause. I will trial Omeprazole and see how this goes."
One doctor told HDC: "I queried whether a CT head was indicated, but [Dr D's] opinion was that this was not necessary."
Over a period of six months, the family had visited the Middlemore Hospital four times. Only on the fourth visit, in August 2017, was a CT scan done and the tumour picked up.
She was diagnosed officially with rare aplastic brain tumour.
"[T]he distress caused by CMDHB to our entire family, especially my daughter, we are still struggling to recover from it. We have been emotionally and mentally destroyed," the girl's mum said.
Health and Disability Commissioner Morag McDowell said: "This is not a case of clinicians failing to diagnose a rare brain tumour, but rather, is focussed on the failure to think critically and respond with greater urgency to the child's emerging and concerning symptoms.
"The failures in care involved numerous individuals across multiple visits, and indicate a pattern of poor care for the patient for which CMDHB is ultimately responsible," McDowell said.
The Commissioner made a number of recommendations to the DHB including using this investigation as an anonymous case study for emergency medicine and paediatric teams; review doctors escalation practices for children; and provide a written letter of apology to the child and her parents.
The DHB said they acknowledged overwhelming pain and sadness felt by the girl's parents, and their disappointment in the care provided to their daughter.
However, they said the case involved an extremely rare diagnosis associated with atypical, complex presentations.
"It is the DHB's view that the care provided was in accordance with standard care based on what was presented clinically at the time. However, it accepted the Commissioner's recommendations, as well as the follow-up actions."
