The parents of Zachary Gravatt, who died of meningococcal disease, have revealed a fresh agony they faced in putting their 22-year-old medical-student son to rest.
They had to struggle to get back tissue samples that were taken during an autopsy and which the pathologist wanted to keep for medical research.
Lance and Jennifer Gravatt, who had already buried their son in a cemetery adjoining their Te Arai farm north of Auckland, had to dig a separate grave for his remains on their land.
In the High Court last month, Dr Gravatt won the right to name health practitioners who cared for Zac before he died in Auckland City Hospital in 2009. The group had been granted name secrecy by coroner Brandt Shortland, who found fault with the health system and not individual staff.
Dr Gravatt approached the Herald this week, exasperated by the latest twist in his son's case, which he considers reminiscent of the 2002 scandal when Green Lane Hospital revealed it held, without parental consent, hearts taken from babies who had died of heart defects, in some cases after legal changes enshrining the concept of informed consent.
In the hope of preventing others having to go through the same trauma as him, Dr Gravatt complained to Health and Disability Commissioner Anthony Hill about the difficulties in obtaining the samples taken from his son's body during an autopsy Dr Jane Vuletic did the day after he died. Samples were taken from organs including the heart, lungs, brain, kidneys and adrenal glands.
In a letter to Dr Gravatt on Monday, Mr Hill said the complaint was outside his jurisdiction as it concerned things that had happened after Zac died. A dead person was "no longer a 'health or disability consumer"' in terms of the code of patients' rights.
The Gravatts learned that samples had been retained only when they read the pathologist's autopsy report.
"We decided we didn't want them retained. We wanted all of Zac together," Dr Gravatt said.
Several days later, they were asked to come to the coroners' offices at the Auckland District Court building to pick up the samples. These were preserved in formalin in a sealed plastic container inside a cardboard box.
Dr Gravatt said he was already upset by his son's death, and having to struggle to get the body tissues back only made it worse. It was "very harrowing" to have to sign a legal document warning about the toxic chemicals in the container and how to dispose of the samples, "when you're picking up part of your loved one".
They took the box home and arranged a ceremony with friends and a priest to bury the samples, still sealed in the container, in a flax kete, and to plant native trees. The site is about 200m from Zac's grave. "Then we found out from reading the documentation that only a small number of the samples taken had been given back," Dr Gravatt said. "We got very upset at that point. We said we want everything back, not just the bits she [Dr Vuletic] thinks we should have back.
"Eventually the pathologist released the rest, so we had to go back in to the district court and go through all that again. We couldn't reschedule everybody [immediately for the ceremony] and I think it took another fortnight.
"The most distressing thing was having Zac's body tissues in the house for a couple of weeks. We didn't know what to do with them. We put them in Zac's bedroom and we had candles lit around them. We had a really nice ceremony [at the farm] in the end."
In a letter to Dr Vuletic, the coroner said she had raised "very valid points in terms of medical research" on the tissue samples, but they had to be returned. "Unfortunately, the legislation is extremely clear in that the samples must be returned if a family requests them."
Dr Vuletic, who is now understood to work in Australia, could not be contacted.
Auckland's chief medical officer, Dr Margaret Wilsher, was concerned to hear of the family's distress but did not think the law had been broken.