Northland mother describes 6-year-old’s meningococcal death

As he lay dying from meningococcal disease, one of 6-year-old Takarua Ngakuru’s final acts was to try and stop his mum from crying.

“I don’t want to make you cry Mum, because you’re going to cry a lot,” he said to his mother, Tui, before being loaded into a helicopter in Kaikohe en route to Whangārei Hospital in February.

Soon after, the kind and compassionate Tautoro School pupil, affectionately known as “Bubbies”, was dead. Tui, with her partner and their 11 children, were then left homeless – forced to leave their one-bedroom whare which health authorities say was a big factor in Takarua’s passing.

However, Tui and staff from Kaikohe’s Māori health provider Te Hau Ora O Ngāpuhi believe a valuable school throat-swabbing programme – which provided key health surveillence opportunities but was abandoned by the Northland District Health Board following last year’s Covid lockdown – could have saved the young boy’s life.

“I think if [Te Hau Ora O Ngāpuhi] wasn’t taken out of the schools, my son’s sickness could have been detected,” Tui said solemnly.

“I felt like the Government let our babies down by taking [Te Hau Ora O Ngāpuhi] out of our school because they were picking up on sicknesses all the time at the school.”

Northland District Health Board paediatrician Dr Ailsa Tuck offered her sincere condolences to the whānau.

However, she was quick to note the school throat-swabbing programme, which targeted rheumatic fever, was never designed to detect or prevent meningococcal disease. She said it was important all parties involved learned from the whānau’s experience.

Life with Takarua

The old Ngakuru whare is a few minutes south of Tautoro School, off Mangakahia Rd/State Highway 15. Its layout is similar to a marae with one large room and a corridor, which had bunk beds built into the walls, leading to the bathroom, toilet and laundry.

With not enough space to house the entire whānau, Tui, her partner and her five youngesttamariki – including Takarua – stayed at the Tautoro whare while others stayed with partners and whānau across Tautoro and Kaikohe.

“We weren’t really overcrowded but to the DHB, that’s overcrowding.”

Tui described Takarua, her eighth child, as markedly different from her other boys – his caring nature often the source of teasing by his older siblings. However, just like any other Far North boy, Takarua loved riding his bike, swimming and doing bombs.

“He was just so humble, kind and compassionate,” Tui said.

'The worst thing ever'

On Friday, February 12, Tui received a call from Tautoro School, telling her her son was sick. Told it was a different son who was known to feign sickness to get out of school, Tui wasn’t overly concerned.

It wasn’t until she arrived at the school and found an ill Takarua that Tui started to worry.

“I got up to the school and my heart just sank because I already know my Bubbies, he always used to get headaches and sore throats.”

Within hours, Takarua’s health had rapidly declined showing a purple rash from head to toe. In a panic, Tui called for an ambulance before medical staff called for a helicopter.

“It was scary and sad and traumatising. Even though I had faith he was going to live, I could see that he was not good at all.”

Expecting a helicopter to land at Kaikohe’s Lindvart Park, Tui became frustrated with ambulance staff who, she believed, were not listening to her. Despite his condition, Takarua tried to alleviate his mother’s stress.

“My baby said to me, ‘Mum, I actually don’t want you to come to the helicopter, I want Dad to come,'” Tui said.

Just six hours after he was picked up from school, Takarua fell victim to the disease – suffering multi-organ failure in the process.

“It’s the worst thing ever, it’s just the worst thing ever,” Tui said, her voice hushed.

“He didn’t make it look as sore as it would have been. He didn’t show any weakness, he was just so brave, it was so sad.”

Eviction

Midway through her son’s tangihanga (funeral), Tui was visited by a public health official who administered further medication to the Ngakuru whānau and informed her she could not return to their Tautoro whare.

“This is during my son’s tangi that she’s telling us that when you leave here, you can’t go back to your home because that was a major factor in your baby’s illness.”

Now homeless a day after her son’s burial, Tui headed for Work and Income in the hope staff could find her some emergency housing. She said she was turned away, told space wasn’t available for her whānau.

Desperate for help, a scared Tui entered Te Hau Ora O Ngāpuhi’s building, pretending to look for a councillor. Having heard about the incident, kaimahi (employee) Ngawai Poa became an advocate for Tui and within hours the whānau were set up in a motel, which they would stay in for more than six weeks.

Poa, rejecting any suggestion of credit, was heartbroken by how the grief-stricken Tuiwas treated by organisations designed to help people.

“It was left up to her, after her son’s funeral, where her entire family were going to live so a lot of systems have let them down, have failed them.”

To make matters worse, Tui was forced to relive her horror just two weeks later when her daughter Sheeandra-Gailene, 13 at the time, contracted meningococcal disease and had to be flown to Whangārei Hospital. Fortunately, she survived.

“It turns you into an emotional wreck. It’s terrible, I hate meningococcal.”

House hunting

With Tui and her whānau safely housed, Poa’s next mission was to find them a new whare more suited to the Ngakuru’s needs, somewhere they could be safe and healthy.

Facing an uphill battle against a housing market bereft of houses, Poa turned to a relative who owned a handful of properties around Kaikohe. After much begging and pleading, Poa was given the green light to house the Ngakurus in a property in the centre of Kaikohe.

After weeks of building, painting and cleaning, Te Hau Ora O Ngāpuhi was able to welcome the Ngakurus into the whare on March 29.

Even on the morning of moving in, staff rushed to splash on the last licks of paint, screw in lightbulbs and sweep the floors as rain fell hard outside. A gazebo covered a large barbecue from which the scent of bacon, patties, sausages and eggs wafted through the backyard.

Hiding from the rain, huddled in the property’s garage, most of the Ngakuru whānau were welcomed into their new whare with a blessing from local kaumātua Hirini Tau. Young Takarua was present in an image held tightly by his grandmother, Sheeandra.

Reflecting on her journey, Tui was close to tears trying to convey her gratitude.

“There are no words that can begin to express how much that means for us.

“It’s been really, really hard for us all, even still to this day, but having the opportunity to be together has lifted a lot of that weight off our shoulders.”

What went wrong?

Ngawai Poa estimated at least 30-40 whānau were in the same position as the Ngakurus – people who the system was letting fall through the gaps.

Given the widely known health inequity experienced by Northlanders, often Māori, in rural areas, Poa still questioned the decision to abandon the school throat-swabbing programme which was a crucial part of community health surveillance.

“They have to really realise that these deprived areas require as many services as they can get and we can only do as much as our contracts allow.

Poa also referenced the importance of effective communication between health organisations to ensure at-risk whānau were supported quickly.

“[In this case], there was no connection with us as a Hauora, as a Māori organisation. If [Tui] hadn’t come to us, we would have had no idea about what she was going through.”

For Tui, she accepts the regret of not knowing more about meningococcal. However, she wants to see more education for whānau, especially in the Far North.

“We didn’t know anything about meningococcal until [Takarua] passed away, and then we get these little pamphlets, which didn’t do it justice at all.

“They say, ‘Covid this, Covid that’, but meningococcal is living here.”

Tui painted an ominous picture of whānau who faced resistance accessing help in the future.

“When you’ve been rejected so many times, over and over and over from all these government agencies, you just end up getting to a point where you think, ‘I’m just not even going to ask anymore, I’m just going to hide away and live like this as long as we can until something bad happens.'”

Poa, crediting Tui’s courage in asking for help, warned whānau would continue to suffer until homelessness was appropriately confronted.

“We need to address the seriousness of the homelessness up here, it’s not just a word, people are living in their cars and poor living conditions – our children are suffering.”

The NDHB did not acknowledge Poa’s view that the throat-swabbing programme gave kaimahi greater health surveillance, saying there was no link between the programme ending and Takarua’s death.

Ministry of Social Development Northland regional director Graham MacPherson said there were no records of Tui approaching WINZ for housing assistance following Takarua’s death.

However, he expressed his deepest sympathies to her and was glad she had beensupported into a home by Te Hau Ora O Ngāpuhi.

Peeni Henare, Associate Minister of Health and Housing, said Tui’s story – combined with recent hui he had attended in Tai Tokerau – pointed to a failure of government services working together efficiently.

“Our hearts go out to the whānau who have lost their loved one and we’ve talked about the frequenecy of hearing stories like this,” Henare, also Whānau Ora Minister, said.

“It certainly makes the challenge even more stark in front of me with respect to all of my portfolios.”

Meningococcal disease facts:

Meningococcal germs are carried in the back of the throat of about one in 10 people at any one time but only very rarely cause illness. Most people who carry the germs become immune to them. The germs do not spread easily. Those who have had prolonged close contact with the person, for instance by living in the same household, are at a slightly increased risk of getting sick. Children who have previously received meningococcal vaccination can still get meningococcal disease because the vaccine does not protect against all types of meningococcal bacteria. Therefore, be on the lookout for signs or symptoms of meningococcal illness even if your child has been vaccinated.

People with meningococcal disease may have some or all of the following symptoms:

• Babies and children:
– Fever
– Crying, unsettled, irritable
– Refusing drinks or feeds
– Vomiting
– Sleepy, floppy, harder to wake
– Stiff neck, dislike of bright lights
– Reluctant to walk
– Rash (purple/red spots or bruises).

• Adults:
– Fever
– Headache
– Vomiting
– Sleepy, confused, delirious, unconscious
– Joint pains, aching muscles
– Stiff neck
– Dislike of bright lights
– Rash (purple/red spots or bruises).

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