Nakiyah celebrates one year tube free

Nakiyah Reid, 3, celebrates one year tube free today. Photo / Kapiti News

Nakiyah Reid is nearly four years old and, for the first time, can enjoy a meal at the table with her family.

The Paraparaumu Beach toddler, who was one of the 600-plus New Zealand children with long-term feeding tube dependency, celebrated one year tube free today, following a gut-wrenching journey that was first captured by Kapiti News in November last year.

Now, full and thriving after her stint as the second New Zealand child to have completed a rare three-week weaning programme at Auckland's Starship Hospital, Nakiyah is proof there is light beyond the tube.

Nakiyah Reid at 6 months, two months after her nasogastric tube was inserted. Photo / Kapiti News

"When she first left Starship she weighed 10.3kg and is now 12kg, so she's doing pretty well," said Nakiyah's mother Shoni Reid, whose daughter's long road began as a newborn, when she was unable to suckle because of a severely inverted jaw.

A battler herself, after an emotional rollercoaster that saw her then-four-month-old reliant on a nasogastric (NG) tube and later a Mic-Key button in her stomach, Mrs Reid can finally move on from the nightmare that included routine hourly feeds.

"I don't feel the stress that I use to because I can put something in front of her and know she's going to eat it.

"She still has the foods she prefers, but she's willing to try new things.

"I guess that's just like any toddler."

On top of having to be tube fed, Nakiyah was terrified of food; her aversion to eating having stemmed from severe gastro reflux as a baby.

With New Zealand currently lacking clinical practice guidelines for weaning children from feeding tubes, and Starship's pilot programme still not funded by the government, Mrs Reid said she hopes there will be change "now there is proof it works".

"You don't get to hear about tubie kids much.

"I was lucky I found out about support pages online, where I connected with other tubie families."

Nakiyah, who took home life-changing healthy eating habits from Starship, has New World to thank, which generously covered the approximate $8000 needed to cover the programme.

Sitting to enjoy a bowl of spaghetti yesterday, a prospect that at one stage had seemed impossible, Nakiyah's success in responding to the programme's intensive behavioural strategies is evident.

Mealtime routines are now the norm for the talkative toddler, who has gained confidence as well as weight since her time at Starship, and now attends daycare like any active youngster.

Finally free of her Mic-Key button, which was removed in November, Nakiyah had the hole permanently closed in June this year.

"I don't have my tube anymore because they said I don't need it," said Nakiyah, the youngest of three girls.

"Now I like eating spaghetti and toast with egg, and chicken."

In between mouthfuls of lunch, she nodded enthusiastically when asked if life was easier now, full of energy and happy to be tube free.

"Now I can get bigger.

"And ride on my scooter really fast."