A Whatatutu girl who can’t breathe and eat on her own has broken through her physical barriers and started school. Turanga Health has wrapped a number of services around Marita McLaren and discovers that out of a daughter’s illness…a mother has found a career in health.
Five-year old Marita was born with esophageal atresia which means she can’t eat normally. For the past two years she’s also had a compromised airway which means she breathes through a tube in her neck.
Unlucky to be living with these extremely serious conditions, the plucky precious daughter of Bessie and Reid McLaren is lucky enough to be wrapped up in the loving arms of an extraordinary whānau who rarely leave her side.
Marita’s most powerful advocate is her formidable mum Bessie who’s fought for Marita’s life every step of the way and now has her own challenges ahead as she trains to be a nurse. “It’s been an experience,
I’ll tell you that, I didn’t see that coming! But if wasn’t for her I wouldn’t be doing it.”
Marita, Te Aitanga-ā-Mahaki, started school at Te Kura Kaupapa Māori o Whatatutu this year weighing just 17kg, and having survived dozens of life threatening surgeries.
Marita’s esophageal atresia means the tube that carries food from her mouth to her stomach never fully developed. It’s in two segments, one part connected to the throat, and the other part connected to the stomach. Since the two segments didn’t connect Marita needed lifesaving surgery at a day old.
Bessie says while handing her newborn over for surgery was hard, “nothing was as difficult as learning at 32 weeks that the life of my baby hung in the balance”. Rushed to Wellington Hospital and on bed rest for two weeks, the post-birth surgery was just the one of many to come.
Marita’s first operation gave her a way to eat, albeit a complex one. Doctors created an artificial opening just under her neck so that anything she ate could trickle out of the hole into an external bag. The bag’s contents were then fed into Marita’s stomach via a tube. “It would go in, and then out, and then from out to in,” says Bessie, who has grown used to describing complex surgery in everyday language over the years.
During this time Bessie persevered with breastfeeding thereby teaching Marita the important art of swallowing. But it was always fraught with danger as any liquid spilling into Marita’s lungs would have led to a chest infection.
“Breathe, swallow, breathe, swallow. She couldn’t do that initially, and at the start she went all blue. It took a while, but I didn’t carry any fear. You can’t afford to. There’s no room for it – my head was filled up with all the important stuff I had to do.”
At three-years-old Marita had surgery that lifted her stomach to sit above her diaphragm thereby removing the need for the tube and external bag. While she can now eat some food through her mouth, she suffered damage to her windpipe and now Marita breathes with a tracheostomy: a small hole that’s been surgically made into her windpipe through her neck. A tracheostomy (trachy) tube sits in the hole and air goes in and out of her lungs. Just one accidental knock and Marita could be deprived of oxygen....
“She’s a battler,” sighs mum Bessie, who’s also bringing up four older children along with shearer husband Reid. “That’s what helps her get through any surgery. Mentally she’s a tough cookie. She bounces back pretty fast.”
While life in the McLaren house is just like any other family juggling work, school and sport, the difference is that everyone around Marita is skilled in her care and emergency procedures. Marita’s watched 24/7 at home and school, and at night she sleeps right alongside her mum hooked up to a breathing and intravenous food machine. “We’re so aware of her trachy. As long as that’s in the right place we’re not concerned. I’ve tried to make sure the kids don’t feel like they have to overcrowd her…just as long as we are all within shouting distance.”
Marita’s older brother and sisters have learned the skills to help Marita breathe safely. “We can do all the practical stuff that mum does,” explains Aroha (18).
Aroha and the twins Errol and Kirangi (12) live at home. Older sister Ashleigh lives in Gisborne. Each of them can help with the delicate and life-threatening job of changing Marita’s trachy once a week.
“At first what we have to do can be frightening but we’ve all learnt how,” says Aroha.
They also help with suctioning multiple times a day; when mucus in Marita’s airway becomes thick and she can’t get rid of the secretions herself. When they hear the telltale sounds of bubbling they grab the ever present emergency pack, place a small plastic tube through Marita’s trachy, and vacuum the secretions out.
The long term goal is that Marita won’t need the trachy. Recent surgery to help hold her windpipe open hasn’t worked, but Bessie’s quietly confident it’ll be gone by 2019. “There’s always a bigger picture, we’re always going back to the drawing board and mentally we’ve prepared her for what’s coming up.”
Bessie says Marita’s fixated on being able to duck under the water when swimming. “I want to put my head under,” replies Marita in her husky voice.
Since Marita was born Bessie and Reid have received untold kindness, help, and love from whānau and friends . Shearers, teachers, aunties, grandparents and siblings have helped the bilingual family, and Bessie and Reid can’t thank them enough.
“It’s all about family,” says Bessie. “I come from a big family myself and they’re awesome. My sister Pauline Brown has been amazing, always our go-to person. In those early days Reid and I and the twins could be with Marita in Starship and the big kids could stay here with Aunty Pau.”
Bessie also pays tribute to her parents Paul and Wini Brown. “My parents are so cool, they were cool back in the days when I was growing up, and they are still cool now. We never experienced the same kinds of hardship they did. We’ve really got nothing to worry about.”
Because of this unified support Marita has travelled to every family occasion be it school camp, the circus, the marae. She rides a bike, does gymnastics, plays with her dog, mucks about with hockey, and now goes to school. At the same time, Marita’s siblings have also been able to pursue their own childhood dreams, and Bessie and Reid have remained a formidable team.
Bessie: “Because of all of them, the whole extended whānau, we’ve lived as normally as possible. We’ve been able to stay together even when we were with Marita at appointments, surgeries, and clinics all around the North Island. We feel very blessed.”
Turanga Health kaiāwhina Tangiwai Milner says the McLaren and Brown whānau are “awesome”. Turanga Health has supported the family with numerous services including Tamariki Ora, Whānau Ora, marae-based exercise programmes and throat swabs for Rheumatic fever prevention. Turanga Health also recently helped Marita access an i-pad for use at school.
“School has opened up a new world for Marita, and the rest of her family, including Bessie, who’s an amazing mum and is now on her own exciting journey,” says Tangiwai.
After providing much of the high level care needed to keep Marita alive, Bessie, 44, is training to be a nurse. She praises the New Zealand health system, particularly the care received at Starship, but there’s times when she’s been frustrated.
After a particularly harrowing visit to the emergency department, a general practice, and then Starship via an emergency plane all in one day, Bessie decided she needed to do something. “I wanted to get in there on the public’s side and be able to help families that were going through what we were.”
Bessie’s completed her certificate in health science and begins a nursing degree in February. Eventually she’d like to work with neonatal babies. Just as they did during her last period of study, Bessie’s family will set up a desk and chair for her in the living room and do more of the household chores and practical care of Marita.
“They all came to the party when I started studying. I guess we’ve all got that long term goal that Marita won’t have the trachy. If I can achieve these next three years of study, then one day I’ll be working as a nurse!”
Tangiwai and the rest of the Turanga Health staff wish Bessie and Marita all the best as they dive into their new challenges.
OPENING its arms to the nurses of the future has earned a special award for Tūranga Health.
The health provider was named winner of the Support for Undergraduate Nurses (Team) prize at the Nurses and Midwives of Tairawhiti Awards for 2018.
And selector Adrianna Grogan (pictured at left) says the impact of its work will be felt long into the future.
As a senior lecturer at EIT's School of Nursing, Adrianna is charged with placing up to 80 students a year with health providers around Te Tairāwhiti.
She said Tūranga Health had been given the award because of the way it welcomes students with open arms, mentors and encourages them, and ensures they have lots of learning opportunities during their placements.
Tūranga Health is built on a vision of “Kia whai oranga-a-whanau mo nga whakatipuranga' . . . building family wellness for future generations,” she said at the awards ceremony in Gisborne.
It offers EIT third-year nursing students comprehsive primary healthcare placements that encompass values such as tinana (physical), wairua (spiritual), whānau (relationships), and hinengaro (mental health).
According to Adrianna a good number of the 22 students who graduated from EIT with a Bachelor of Nursing in 2018 had enjoyed clinical placements at Tūranga Health. Of those graduates, 20 had employment secured, three of them with a Māori health provider in Auckland,” she says.
The support they received through the course of their training was vital to that, and to the contribution they will make to the health sector going forward.
THE influenza vaccine is a big part of Tūranga Health's Tū Mahi Workplace Wellness programme and when nurses Kimi Biddle and Swanitha Brown visited the Coxco packhouse recently workers were keen to see them.
Twenty-seven-year-old machine operator/stock hand Sandra Tombleson only started at Coxco this year but she'd got the vaccine through her former employer so decided to do it again.
“It's great that it's free,” she says. She adds that she’s determined not to take bugs to her home, which she shares with her one-year-old niece and 95-year-old grandfather.
Meanwhile Coxco administration manager Lisa Loader lined up for the first time. “I hadn't booked, but a space became available so I jumped in,” she says. “I'd always thought about having a flu vaccine but having it here at work made it really easy.”
Tūranga Health has long worked at educating whānau about the benefits of being protected against influenza but 2016 was the first year it started offering the vaccine through its workplace programme.
“Last year our nurses gave more than 310 vaccines,” says events and programmes co-ordinator Dallas Poi. “So we found it was a great service to offer, especially for primary industry workers who are often unable to get to the GP during the course of their working day.”
The importance of helping workers to stay well is just one reason why agencies like Tūranga Health are being proactive about immunisation.
Another reason is the risk posed by dangerous strains like the ultra-powerful ‘Aussie’ flu (H3N2), which is covered in the new four-strain vaccine being used in New Zealand for 2018.
“Since we launched the service there's been a great response to the vaccine initiative both in our Tū Mahi programme, and also among our own workforce,” Dallas Poi says.
“We offer it to staff, not just because they are often in contact with whānau as part of their working day, but also as a way of supporting them to stay well in themselves.”
IT'S a sunny autumn morning and at Tūranga Health's city-centre gym questions about medication are coming thick and fast.
“What do I do if I have side effects?” How do I manage my medication when I go overseas?” Why am I getting nose bleeds?”
Nurse Kimi Biddle is up front fielding the questions triggered by her presentation, but this – along with talks on issues like nutrition – is just the first part of the Eke Tū sessions run by Tūranga Health.
Kaiāwhina Bernie Semau has a part to play, too . . . talking about diet and leading whānau through specially-tailored exercise programmes to help those with chronic conditions manage their health.
Participants are referred by their GPs and to make sure everyone can get along there’s a choice of location, timing, and settings in Gisborne and Te Karaka.
And while up to 30 people are gathered in the gym for this particular session, not all of them have health issues like diabetes or heart disease: some are whānau there in support. Tūranga Health chief executive Reweti Ropiha says that's as it should be.
“There needs to be a certain amount of compliance around things like diet and medication, how involved the whānau is, it’s the litmus test for us,” he says.
“Traditionally, the process of supporting those with chronic conditions has only involved the individual but with Eke Tū we say ‘why not widen that approach to make sure the whānau are at the centre of it’.”
Mr Rophia likens the programme to Green Prescription “but on steroids”.
“We had to come up with a really rigorous programme that provides tools for individuals and whānau to achieve better health outcomes,” he says.
“And that's something that is usually easy to measure. For example, if someone has been averaging 10 nights in hospital a month and we can help them get that down to six, then that's a big win.”
For Bernie, the programme's strength is how it gives people the tools to manage their own health.
“Eke Tū gives patients an opportunity to increase fitness, lose weight and improve their overall health,” he says.
“By giving our patients the knowledge, skills and motivation to make good decisions in daily life we’re empowering them to take a leading role in their own care.”
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