Wahine Toa

Wahine toa: Marita McLaren does not breathe or eat by herself, but with a variety of stents, stomas, holes, and tubes she can live life to the fullest. Pictures by Jo Ware Imagery

A Whatatutu girl who can’t breathe or eat on her own has broken through her physical barriers and started school. Turanga Health’s Hayley Redpath meets 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 oesophageal 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 in the loving arms of an extraordinary whanau who rarely leave her side.

Marita’s most powerful advocate is her formidable mum Bessie who has 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 it wasn’t for her I wouldn’t be doing it.”

Marita, Te Aitanga-a-Mahaki, started school at Te Kura Kaupapa Maori o Whatatutu this year, weighing just 17kg and having survived dozens of life-threatening surgeries.

Marita’s oesophageal atresia means the tube — the oesophagus — 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”. She was rushed to Wellington Hospital and put on bed rest for two weeks.

The post-birth surgery was just 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 over the years has grown used to describing complex surgery in everyday language.

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.”

When she was 3, Marita had surgery that lifted her stomach to sit above her diaphragm, 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 tracheotomy — a small hole that’s been surgically made into her windpipe through her neck. A tracheotomy (trachy) tube sits in the hole and air goes in and out of her lungs.

It's a family affairJust one accidental knock and Marita could be deprived of oxygen . . .

“She’s a battler,” sighs Bessie, who is 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 is 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,” says 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 learned how,” says Aroha.

They also help with suctioning multiple times a day; this needs to be done 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 is 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 is fixated on being able to duck under the water when swimming. “I want to put my head under,” says Marita in her husky voice.

Since Marita was born, Bessie and Reid have received untold kindness, help, and love from whanau 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.”

This powerful support network means Marita has been able to travel 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 whanau, 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 kaiawhina Tangiwai Milner says the McLaren and Brown whanau are “awesome”. Turanga Health has supported the family with numerous services including Tamariki Ora, Whanau Ora, marae-based exercise programmes and throat swabs for rheumatic fever prevention. Turanga Health also recently helped Marita access an iPad 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 they have received at Starship Children’s Hospital in Auckland. But there are times when she has 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.”

She has 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.