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Last Christmas, preschooler Nakiyah Reid uttered three little words: “I love jelly.”
For anyone in earshot, her short sentence held little meaning. But for four-year-old Nakiyah’s parents, Callum and Shoni Reid, it was music to their ears. “For Nakiyah to say she’s hungry or loves food is the best!” says Shoni, 29, with a smile. “A year on, it still makes me cry.”
For the first three years of Nakiyah’s life, the wee girl didn’t eat. Nothing passed her lips except a few chips or crackers. Born with an inverted jaw, the sweet blonde cherub struggled to feed, meaning she failed to thrive and maintain weight.
As a newborn, Callum and Shoni used a specialist teat, known as a Haberman Feeder, to put milk into their baby’s mouth, drop by drop. But by the time she was four months old, the best option was liquid feeds through a nasogastric tube. At eight months old, she was fitted with a Mic-Key button in her stomach.
Nakiyah became one of an estimated 600 New Zealand children whose lives are sustained by tube feeding. Like many tube-fed kids, there was no physical reason why Nakiyah couldn’t eat. She simply didn’t know how to feel hungry and became dependent on her liquid feeds.
“Most parents take for granted the fact their child will eat,” says Shoni. “When they don’t, you feel like a failure as a parent.” Callum and Shoni – who are also parents to Malachi, 14, Anika, eight, and Dakodah, five – tried and failed to wean Nakiyah themselves.
Out of desperation, they began thinking of ways to fundraise to get Nakiyah on a $30,000 German tube-wean programme. But their fortunes changed when they were offered a place on a groundbreaking tube-weaning trial, launched last year at Starship Children’s Hospital in Auckland and funded by New World.
Callum and Shoni feared their little girl, who was born with an inverted jaw, would never eat.
No more tubes!
In August 2014, Nakiyah and her mum travelled to Starship for the three-week programme. Administered by a team of speech-language and occupational therapists, dietitians, doctors and psychologists, the plan aims to take the fear out of food, provoke hunger and teach the kids how to eat. Many tube-fed children gag or choke on food because they are not used to swallowing.
All tube-feeding ceased and Nakiyah was instead given six small meals a day, each beginning with a relaxation technique, such as soft music. Shoni continued the basics of the programme when she returned home to coastal Paraparaumu, north of Wellington. More than a year on, the life of Nakiyah and the Reid family couldn’t be more different and as one of the tube-weaning trial’s success stories, the little girl has been chosen as the face of a New World Starship awareness campaign.
Nakiyah now eats the same as any other little girl. Although she’s small for her age and can still fit size-one pants, she is putting on weight and now finds enjoyment in food. Her parents say their bright little girl is a “real character”. “She’s tough – she’s been through a lot,” tells dad Callum, 42. Shoni adds, “She’s in the pantry all the time now! That may be annoying for some parents, but we love it.” The stressful, time-consuming routine before the tube-weaning programme is now a distant memory for the loving family. For three years, Shoni and Callum worked in shifts, hooking up their daughter’s liquid feeds every four hours. It took an hour to finish. Because of severe reflux, Nakiyah would vomit up 90% of what she consumed. “Imagine the washing,” Shoni says. “I had two cots set up for her, and we were always pulling bedding off one and putting her down in the other.” Because of the cumbersome pump and tubes, it was almost impossible for the couple to leave the house or for Nakiyah to go to daycare or to visit friends. “The first three years were horrific,” admits Callum, adding how proud he is that through it all, Shoni never gave up.
Thanks to the programme, Nakiyah was able to enjoy her first birthday cake and her first Christmas dinner.
Game changer
Despite the fact Nakiyah wouldn’t eat, her caring mum always set a place for her at the family dinner table. “We encouraged her to eat, the older kids encouraged her to eat – it never happened,” she recalls. “We even bribed her with lollies, but still she wouldn’t eat.”
The pair say they’ll be forever thankful for the opportunity Starship gave Nakiyah and to Tube Wean NZ for all its support. “This programme has not only changed Nakiyah’s life, but the whole family’s,” tells Shoni.
Nakiyah has enjoyed her first birthday cake and had her first Christmas dinner. And she has recently reached a major milestone – a whole year without liquid food. While Nakiyah is undergoing genetic testing for other health issues, she is a different little girl today than what she was a year ago.
“My biggest fear was always that Nakiyah would start school with a feeding tube instead of a lunchbox,” confesses Shoni. “I know that’s not going to happen now. We have a four-year-old who eats the same as any other girl her age and now loves food.”
Nakiyah will appear on posters promoting Starship’s tube-weaning programme from January 18.
