Jeanette Queensell-Logan was born in Tonga with a heart defect. Her adoptive parents brought her to NZ where a series of mistakes in her care were made. Now they face a long wait to make a home with help from ACC.
The infectious smile on Jeanette Queensell-Logan's face gives no clue to the pain she has endured.
She is celebrating her fourth birthday next month, but the pre-schooler's heart problems have seen her in and out of hospital more times than most people are in a lifetime.
After a series of mishaps at Auckland Hospital in July 2016, before she went into cardiac arrest, Jeanette is now confined to a wheelchair and must learn to crawl, eat and talk again.
And her house is crammed.
She shares a room with her parents Mele and Stephen Logan in their tiny Glen Eden home so they can monitor her through the night.
She shares their double bed because the family don't have enough room for another bed in the room for her - the Herald on Sunday photographer had to stand in the doorway to capture the trio.
But her parents also want to be close enough to monitor her breathing while she is asleep.
Her five brothers and sisters share the remaining two bedrooms between them.
"If she wasn't injured she would have shared a room with her sisters, they have bunk beds," Stephen Logan says.
• Read more: Hospital failures: Toddler's cardiac arrest could have been avoided
"Jeanette needs her own room so she can have access to the bathroom and hoists to get her in and out of her bed. The wheelchair doesn't fit in that part of the house.
"She has spasms in the middle of the night – her legs and arms move all over the place then she goes into a foetal position and cries."
They worry about squishing her in the night.
The house has become more of a tight squeeze since Jeanette's cardiac arrest with her now needing more room for all her mobility equipment, and, as she needs round-the-clock care, somewhere for her carer to sleep.
ACC has ruled that there was a failure in treatment leading up to Jeanette's cardiac arrest, so the family are eligible for home renovations.
These include a new bedroom for Jeanette, a room for her carer, an accessible bathroom, and a storage area.
A lift will be built by the garage to take Jeanette in her wheelchair from the family's car to the house.
But it's not a quick fix. And it's expensive.
To turn the Logans' new home into a reality, more than $600,000 worth of modifications need to be done on a house worth $500,000.
It's on a tricky, sloping site.
"The high cost reflects the fact that the house does not lend itself well to modifications. It is a small home, and there are limited modification options," says an ACC spokesman.
ACC must follow normal process and timelines for housing construction, he says.
This involves concept drawings, turning those into working drawings, seeking building consent and going out to tender for construction.
But construction is rife in Auckland as the city struggles with population growth and the Auckland Council is dealing with huge numbers of building consent applications.
"Council has recently been experiencing extremely high volumes of applications which has a direct impact on processing times," says general manager building consents Ian McCormick.
"We acknowledge our statutory obligations and take these responsibilities extremely seriously, and are conscious of the effect that the timeliness of consents has on the construction sector."
He says it's difficult to put an average time on processing building consents, but the council takes personal circumstances into account when prioritising work. Projects were classified from simple through to complex.
And there is no question this project is complex.
Concept drawings were approved in December but the process was delayed because Stephen Logan asked ACC to look at extending the size of the garage to allow for additional storage space, the spokesman says.
The requested changes are difficult, and ACC has had to seek further engineering advice.
The spokesman says the additional work is unrelated to Jeanette's injury needs, so the family would cover the extra cost.
But Logan says the extra changes are a direct result of Jeanette's medical condition.
"I was losing my personal space in the garage trying to fit all of Jeanette's stuff in and we needed better access to the house with Jeanette's van."Even after consent is granted, the
ACC spokesman says they can't be certain how long the modifications will take after the tender process.
"But similar work has taken 4-6 months from the date the builders go on site."
Logan says the waiting game is frustrating.
"We started talking last year and had a meeting in January.
"It was supposed to be a 12-month project and we still haven't got working drawings back from the council yet - it's been really frustrating."
In the meantime, the family have been reimbursed $10,000 by ACC for the cost of minor housing modifications already completed, including a deck and wheelchair access to the house.
They were also provided a shed for storing Jeanette's medical equipment, and a heat pump will be installed in her bedroom.
ACC has also provided Jeanette with a wheelchair, a specialised van to transport her in it and a standing frame and accessories worth a total of $93,107.
Not only is caring for Jeanette expensive, it is exhausting.
She needs to be fed through a tube four times a day and takes medication at regular intervals.
Her five siblings Tukala, 14, Annabelle, 11, Sione, 10, and twins Thomas and Lucia, 8, adore their baby sister and are protective of her.
They help their mother with the daily chores - nappy changes, pushing her wheelchair and playing with their baby sister.
"The kids are really affectionate with her and they've always been there for her," says Logan.
"They interact with her as much as possible – singing, reading and playing with her on the computer. She's just happy being around the kids."
Jeanette needs 24/7 care but both parents need to work to provide for their family. Her mother works during school hours, while her father works fulltime in IT.
Jeannette attends daycare and ACC fund a carer for her for 15 hours 45 minutes a week.
Her parents are also paid by ACC to care for her for 20 hours, 45minutes when she is at home. Care costs total more than $28,900.
Putting Jeanette in respite care is not an option for the family.
"We don't want to leave her with strangers and walk away," says her father.
"She has her routine - daycare then home with her brothers and sisters. The stimulation is good for her: she wouldn't survive being sent to a strange place.
"Our philosophy for Jeanette is to 'live every day like it's her last'. Nothing fazes our bubbly angel- she just wants to get on with life."
Jeanette could have had a very different life if it hadn't have been for the Logans.
She was born in Lapaha village in Tonga to Mele's neice, Jackie Queensell, who was 18 at the time.
When she discovered she was pregnant, it was agreed the Logans would adopt Jeanette.
"We adopted Jeanette so we could give her the best life she could have," says Stephen Logan.
"There was no partner and no means to raise her.
"We knew Jeanette's life wouldn't have been fulfilled if she stayed in the islands. We wanted to give her a good education - that wouldn't be possible if she stayed in Tonga."
It took several months to get her adoption papers in Tonga sorted, so she stayed with her birth mother for the first 10 months.
Tongan doctors discovered Jeanette had acute heart problems and sought medical advice from New Zealand.
"Jeanette had tests done in New Zealand which showed she had a weak heart; we were told by doctors she would have months to live if she went back to Tonga," Logan says.
At 3 months New Zealand doctors diagnosed Jeanette with D-Transposition of the arteries, a birth defect in which the large arteries of the heart are not connected properly.
About 10 to 20 children in New Zealand have this condition, which can now be diagnosed antenatally.
"It's when the two main arteries leading from the heart are switched around – the connections are wrong," says Dr Kirsten Finucane, head of the Paediatric Cardiac and Surgical unit at Starship.
"The blue blood ends up going to the body when it should be going to the lungs and the red blood goes to the lungs when it should be going to the body."
Jeanette also has several holes in her heart and the conditions cause ongoing health problems.
The couple brought Jeanette to New Zealand in June 2015 and she received the medical care she needed.
But she was in and out of hospital with heart failure and breathing issues and almost died four times.
"She was born with a congenital heart defect but she looked perfect," says her father.
"We didn't think she would live past three months. Each time she's had a setback we play rock, paper, scissors to see if she was going to heaven or staying here. She seemed to win to stay."
At 16 months, Jeanette had an arterial switch operation and a pacemaker inserted.
Logan says that has helped with her development.
"Her hair was growing and her teeth were starting to appear. She had a massive appetite and was thriving " says Logan.
But when she was 23 months old, she was admitted to hospital again.
"Her nose was runny, she had a bad cough and she had trouble breathing ."
Logan was concerned Jeanette's health was deteriorating, so he drove her to Auckland hospital's accident and emergency department.
"It was horrific. She had tubes coming out of her neck, lines everywhere, it was heartbreaking. There were problems trying to get a her on to an IV drip then she had a massive heart attack."
She was eventually diagnosed with incidental hyperkalemia. The condition involves having high levels of potassium. This led to her cardiac arrest and a hypoxic brain injury.
"When a heart goes into arrest the brain is the first organ to be affected. It is the most sensitive organ and it loses the most oxygen, which can damage the brain," says Dr Finucane.
An independent report from ACC acknowledged there was a failure in the provision of treatment up until Jeanette's cardiac arrest.
Jeanette was left disabled and is taking baby steps to reach her milestones again.
"She's nearly 4, but back to being a baby," says Logan.
"She is learning to crawl but she can't sit up properly by herself but she's getting close. They have got her in a standing frame at daycare. She has little tone in her body because not being able to walk and stuff – they are trying to build her up. The mental side of her brain is alert but she can't speak and she has problems with swallowing."
Her progress is slow but sure.
Her heart problems will always slow her down but doctors expect she will eventually regain some mobility.
She's learning to swallow again before she can begin eating and talking.
Last year, the Herald on Sunday met Jeanette at her daycare while reporting on another story.
She was lying on the floor, lethargic, but communicating with a knowing gaze.
When the Herald on Sunday caught up with her recently she played up to the camera and had a beaming smile on her face. She could sit up in her wheelchair.
Her father says she is like a cat with nine lives who has already used up four.
"The doctors, the nurses – everybody is sort of lost for words on how she's got where she is. She's just been a right little miracle in some ways."
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