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.”
FOR years Courtney Stubbins has worked in the disability sector because she has a passion for challenging barriers that block people from being their best.
And that's a passion she brings to CAYAD (Community Action on Youth and Drugs), Tūranga Health.
“If we want to minimise harm we need to take an honest look at the environments young people are in, from home, school and the community to the broader structures of society,” she says.
Courtney’s grateful for the chance to learn from the grassroots actions and initiatives taking place in Tairāwhiti. Since moving here in 2017 Courtney has immersed herself in the community, connecting with schools and youth organisations. “Working with CAYAD’s a new area for me, there’s heaps to learn. Because I’m new here there’s a lot to take in about the people, land, culture and history.”
The CAYAD team supports community-led programmes or projects that address alcohol or drug harm, or promote youth wellbeing in general. Schools, marae and sporting groups are the types of organisations that might access its resources and expertise.
AFTER years of raising her four children, Ema Jones (left) is now sharing her wealth of knowledge with whānau at the Vanessa Lowndes Centre.
VLC helps whānau with mental, physical or intellectual disabilities build confidence, perhaps to the point where they are job-ready. And for “Aunty Em” that means tackling the basics.
While VLC offers programmes from creativity to cooking, horticulture to health, her job as kaiāwhina involves delivering modules around personal hygiene and running a home. “It is all things we do in our everyday lives – having regular showers, keeping the house clean – and we tend to take it for granted that everybody else does the same,” she says.
“But some of our whānau require a bit of help in learning the skills needed to live independently. We know what their strengths are, we know they can live well, it's just a matter of providing the necessary support and guidance.”
Born in Tokomaru Bay, Ema Jones (Ngati Porou) brings a broad range of experience to her role at VLC, which has nearly 40 whānau on its books. ”
She's a big fan of hunting, fishing and camping; an experienced netball player; and, when she gets the chance, loves to read. She goes to great lengths to do her job driving more than 70 kms each way daily from Matawai, where her husband manages a farm. “This work is perfect for me,” she says. “It means I can be 'Aunty Em', not just to my own whānau, but to the whānau here at VLC.
TURANGA Health has again earned a big “tick” for the work it does as a leading primary health provider.
Like a voluntary, four-yearly warrant of fitness, EQuIP (Evaluation and Quality Improvement Programme) accreditation is awarded after an intense process of auditing that sees quality manager Shirley Keown – and the rest of the team – come under the microscope.
The Gisborne organisation first went for accreditation in 2007: a decade after its 1997 opening, when it had a kitty of just $300 and a client list of only 10 whanau.
Now, at the age of 21, it has come of age and chief executive Reweti Ropiha says that is reflected in the accreditation process.
“When we first went down this road it was all about the minutiae of working in primary health . . . there was a lot of dotting of 'Is' and crossing of 'Ts',” he says.
“For the last two programmes, though, there has been a definite shift to looking closely at things like strategic planning and examining relationships. They're saying 'we know you can do the day-to-day stuff, now let's go a little deeper'.”
Auditors from Australasian agency DAA spent three days assessing Turanga Health across clinical, support and corporate functions – not just looking at how it looks after whanau today, but also how it is ensuring a strong and sustainable tomorrow.
“It's not just about the services being provided right now,” Mr Ropiha says. “When you are working with Crown dollars you need to show that what you are doing makes your organisation strong going into the future.”
For her part, Ms Keown says that after a near 30-year career in measuring health outcomes, the process is getting easier at Turanga Health, even as the assessment criteria get harder.
“As an organisation we are now doing a lot of this work as we go along so it is more a matter of pulling it together to capture a point in time,” she says. “That is kind of the whole point. It's about validating our systems and processes to reinforce the way Turanga Health goes about fulfiling its purpose.”
And though she is at the sharp end of the assessment process, she likes the auditors' focus on a constant need for organisations to evaluate, evolve and improve.
“So it's not just about doing a great job . . . it's about always looking for ways to make things better for whanau,” she says.
“I think it offers assurance that we are a quality provider that is always striving to give the best quality service.”
– EQuIP (Evaluation and Quality Improvement Programme) is an accreditation programme that addresses the essential elements of quality care.
– Turanga Health first earned accreditation in 2007 and has been successfully assessed every four years since.
ALL Annette Ransley (far right) wanted was for the pain to go away - but she got more than that!
The osteoarthiritis sufferer has now thrown away her walking stick and the prospect of hip surgery is increasingly remote thanks to a Hauora Tairawhiti programme at Turanga Health.
Annette is one of more than 140 people to have so far taken part in a Tūranga Health-hosted outreach programme to do just what Annette has achieved: manage their osteoarthritis to the point where hip or knee surgery may be avoided.
Funded by the Ministry of Health and run by Hauora Tairāwhiti, the two-year pilot programme – started in January, 2017 -- saw physiotherapist Samantha Henderson-Genefaas run classes at both Gisborne Hospital and Tūranga Health for clients referred by their GPs.
And this year it all continues with senior therapist Paula Bruce taking the reins while Sam is on maternity leave.
“The programme is aimed at people with mild/moderate hip or knee osteoarthritis with the intent of reducing pain and improving function and to prevent or delay the need for surgery,” Paula says.
“Though many clients are reluctant to go to the doctor, letting the GP know about pain or stiffness in your hip or knee means we can get started with treatment early.
The programme runs in six weeks blocks and consists of weekly exercise classes, sessions about how best to manage osteoarthritis, and an education component with input from a dietitian, pharmacist, and a diabetes and gout educator.
“Times are flexible with options during the day and after hours and Tūranga Health kaiāwhina can offer transport to and from classes,” saus Paula.
Once the six-week period is over clients are often referred to other Tūranga Health programmes or given green prescriptions so they can build on the good work they’ve done.
“The goal is to find the types of activity people enjoy so they can make long-term lifestyle changes.”
The pilot programme will continue until the end of 2018 with the aim of seeing 288 people.
For her part, Annette says that after putting up with a painful hip for years, the six-week programme gave her an exercise regime tailored just for her . . . and it's working.
“Six weeks is a big commitment but I managed to stick to it because I thought it was important,” she says. “Before, if my hip gave out I would fall but now I have the strength in my legs to avoid that. The help we have had is awesome and I’m so grateful for that.”
And her classmate and line-dancing buddy, Dawn Wihongi, has made similar progress, ditching the walking frame she used when an osteoarthritic hip stole her mobility.
Dawn loves being in an environment with so much support and encouragement and is stoked to have delayed a planned hip operation.
“My family thinks I am doing wonders so I'm really proud of myself,” she says.
ELISABETH Tākao, Tūhoe, is one of hundreds of women Tūranga Health supports each year to breastfeed their moko. Here Elisabeth shares her story alongside Tūranga Health nurses and kaiawhina who say they are starting to see a rise in the number of exclusively breastfed Maori babies.
Twenty-eight-year-old Elisabeth Tākao is revelling in her ability to exclusively breastfeed baby Tamaikoha Tākao-Smith, and credits Tūranga Health for their support.
“This time I wanted to breastfeed fully and wanted to express, and I when I told my nurse she was amazing.”
Elisabeth’s Tamariki Ora Nurse Celia Letufuga helped Elisabeth acquire a breast pump and gave her advice on the best way to express and store milk. Freezing breastmilk for later use was a revelation for Elisabeth.
“I thought that was the greatest lifehack ever! There’s no wastage. It’s all been amazing,” says the motivated mother of three.
Support from Tūranga Health
Tūranga Health staff working with mums like Elisabeth, say breastfeeding is the single most important thing they can help a mum and a family with, once a child is born.
As well as Celia, Tūranga Health’s Tamariki Ora team includes nurse Akesa Kavai, kaiāwhina Sarah Brown and Leslie Puketapu, and manager Janneen Kinney.
“It’s the best start for baby, mum and whānau,” says Janneen. “Breastfeeding has been shown to improve the short and long term health of baby and their whānau,”
The Tūranga Health staff, say breastfeeding is more widely spread in the community compared with four years ago, and that’s a huge victory.
“We know that breastfeeding is hard work and takes commitment however the benefits that baby and mother will reap are truly incredible,” says Sarah. “We’re here to help make that commitment to breastfeeding easier for both mum and baby.”
Elisabeth, who intends to exclusively breastfeed Tamaikoha until he is at least six months old, couldn’t agree more.
With the support nurse Celia, and her partner Hemi Smith, Elisabeth’s been able to remain in her Te Wānanga O Aotearoa programme of study, taking baby with her to class, weekend noho, and marae.
“For me it’s been amazing to be able to keep studying. I thought I would have to stop with baby but it’s been so easy to make it part of my life.”
Elisabeth’s study has reignited her interest in her Māoritanga and she has woven her experiences of pregnancy, birth, and breastfeeding into her creative and written work.
“A lot of my past year’s work has been about Tamaikoha my baby, and Tamaikoha the pou tokomanawa.”
Breastfeeding pilot programme increases rates
Four years ago Tūranga Health launched pilot breastfeeding support programme Kiri ki te Kiri Innovation (Skin to Skin) which aimed to increase the breastfeeding rates for first time Māori mothers.
Now, with the combination of kaiāwhina support, and Kiri ki te Kiri, breastfeeding rates have risen across the rohe.
The New Zealand target is 75% of Māori babies be exclusively or fully breastfed at six weeks, and 65% at six months. In 2016, 58% of Māori babies under the care of Tūranga Health were exclusively or fully breastfed at six weeks and six months.
“We haven’t reached our target yet, however it is fantastic increasing numbers of babies are being breastfed.” says Janneen. Four years ago about 35% of babies were exclusively or fully breastfed.
Increasing the awareness and knowledge of breastfeeding, involving partners and whānau as much as possible, and maximising community support, all helps.
“There can be a raft of reasons why a new baby doesn’t breastfeed,” says Janneen. “In a small number of cases, mothers experience lactation problems and other health issues.”
“Along with the Tamariki Ora Well Child Service, whānau can access the expert skills and knowledge of midwives and lactation consultants in the community.”
“We’re all here to help.”
Meanwhile, Elisabeth is thrilled with the balance she has in her life being a mum, a partner, and a student.
“I’ve been able to do all of this at the same time and I have connected even more with my Maori side. I’m proud. Really proud of what I’ve been able to achieve.”
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