Gideon Dunton, now 22 months old, is fighting a condition that left him starving to death in New Zealand. His family uprooted to Australia with the hope of keeping him alive. Photo / Supplied
Gideon Dunton, now 22 months old, is fighting a condition that left him starving to death in New Zealand. His family uprooted to Australia with the hope of keeping him alive. Photo / Supplied
Audrey Dunton remembers holding her unresponsive baby boy in her arms with tears streaming down her face while she begged a Waikato doctor to save her starving son.
"We were broken. Our children were broken. Long months in hospital, fear of their baby brother never coming home... he was justa skeleton of a baby," the 27-year-old mum told the Herald.
Her son Gideon hasn't been able to process food without vomiting since he was two weeks old. He's fed through a tube but even then he's battled major complications, and little has been known about what's causing him to reject food.
Dunton said she believed if her family hadn't uprooted their lives in New Zealand and moved to Australia her youngest child could have starved to death.
Waikato Hospital staff wouldn't comment on Gideon's care, citing patient privacy, despite the Herald providing a waiver signed by Dunton.
Dunton shared her family's story with the Herald following a letter she and her husband wrote to Health Minister Andrew Little last month, outlining their thoughts on what needed to change in New Zealand to ensure babies like theirs weren't left to die.
Gideon was born in December 2020 - "small but healthy", Dunton said.
Gideon with his mum Audrey, dad Timothy, sister Lucy and older brother Angus in Perth, Australia. Photo / Supplied
However, she said, from the age of two weeks he started having trouble feeding.
"He couldn't seem to use his jaw, he was choking a lot and then started vomiting a lot."
Initially, healthcare professionals put his sickness down to reflux issues, Dunton said, but at two months old Gideon had an episode of vomiting blood.
Dunton said a doctor at Waikato Hospital gave Gideon a nasogastric (NG) tube, which passes through the nose into the stomach to feed and skip the swallowing process. After that, she said they were sent home.
"He couldn't handle it, he was still vomiting. He was losing weight, he wasn't growing, and was just floppy, pale and lethargic all the time. There was clearly something more than swallowing issues going on."
She said doctors didn't seem interested in working out why Gideon was vomiting blood and having severe difficulty feeding.
"My gut was telling me there's something going on, something is causing this. This is not normal."
At five months old, Gideon had visited Waikato Hospital's emergency department at least four times, Dunton said.
Medical records - seen by the Herald - said Gideon went five days without nutrition before he was admitted to Waikato Hospital on June 17 last year.
He had urgent surgery to insert a gastrostomy tube (also called a G-tube) through the belly, bringing nutrition directly to the stomach, records showed.
Gideon at 7 months old in a newborn onesie being held by his older sister Lucy. Photo / Supplied
However, the day after surgery he had "spiked temperatures" and a "significant leak of feed from gastrostomy", medical documents showed.
Dunton said for three days her baby was left in "indescribable pain, causing him to become completely immobile and silent, drifting in and out of consciousness".
"We were begging for a transfer to Starship Hospital but my request was denied," Dunton said.
"I was called 'over-anxious' and my concerns were dismissed... my baby continued to deteriorate."
She said it wasn't until they sought help from a patient advocate that hospital staff agreed to complete a surgical review.
"The notes from that review still hurt to read."
Medical notes showed on June 21 last year - four days after surgery - Gideon was taken back into the operating theatre to find out what went wrong.
"Large abscess cavity noted inferior to gastrostomy between fat and fascia. Large gaping hole in stomach, balloon device intragastric," the records said.
The tube doctors fitted for him was too big, Dunton claimed. Records showed the stem of the balloon was 3mm too long.
Over the next few months, Dunton said, Gideon had four more surgeries to try to repair the damage but each time the abscess returned, and spread, reinfecting his abdominal wall.
At 8-months-old he weighed just over five kilos. "He was dying," Dunton said.
By the end of June and then again near the end of July last year, Gideon was placed on Total Parenteral Nutrition (TPN), which is another method of feeding - a special formula given through a vein that bypasses the gastrointestinal tract.
TPN was a last resort as it was high-risk and could lead to all sorts of complications like liver failure, infections and blood clots. It also meant Gideon couldn't leave the hospital.
By Christmas, last year doctors switched him to a jejunostomy tube (also called a J-tube), which is surgically placed into the small intestine to help with nutrition and growth.
Dunton said a Waikato doctor advised her that Gideon's J-tube needed to be changed every six months under general anaesthesia. They were put on a waiting list which got delayed by a month. By that time, the balloon inside Gideon burst, which meant the J-tube stopped working.
Gideon was 16 months old by that point, Dunton said. His blood sugar was dangerously low and because he didn't have enough fuel to burn, his body started "eating itself" to survive, she said.
"He was essentially starving to death."
Gideon at 8 months old after a botched surgery. Photo / Supplied
In July, Dunton said her family made the heartbreaking decision to leave New Zealand and move to Australia, where they rushed straight to Perth Hospital's emergency department.
"They were able to change his J-tube within four hours without general anaesthesia."
While Gideon has still not been given an official diagnosis, Dunton said a doctor in Perth believed he had Glycogen Storage Disorder Type 0, which meant his body didn't properly break down and store sugar.
"His condition here is being managed much more closely and they have treatment options to trial for him that weren't ever offered to us in New Zealand."
Gideon was still fed through the J-tube overnight to keep his sugars stable, and during the day he could eat small amounts.
"So far we have only one formula that he tolerates through his tube, others make him very sick so we have to be careful with what we give him and keep an eye on how he processes it."
Dunton said she felt doctors in Perth were determined to understand the root of the problem and actively listened to her concerns.
Gideon was now walking, laughing and has adopted a cheeky habit of hiding anything he can get his hands on, Dunton said.
In her letter to the Health Minister, she said the biggest problem with New Zealand's health system was access to appropriate specialists, who were often based outside the patient's district, and consultants that could offer a second opinion.
Health Minister Andrew Little. Photo / Mark Mitchell
Little told the Herald it was not appropriate for him to comment on individual cases because of the clinical decisions involved in patient care.
"However, there is a system in place to investigate complaints about the public health system, and I encourage anyone not happy with the care they've received to take their concerns up with Te Whatu Ora - Health New Zealand, and with the Health and Disability Commissioner."
The family lodged a complaint on September 20 to the Health and Disability Commissioner, which has requested further information.
A Te Whatu Ora - Health New Zealand Waikato spokesman said the hospital did not have a paediatric gastrologist available.
They said the timeline and description of events provided by the Herald did not align with the hospital's records. When the Herald asked the spokesperson to specify, they declined to comment further.
Asked about Dunton's privacy waiver for Gideon, the spokesperson referred the Herald to the Te Whatu Ora website, which said "even if a valid privacy waiver was provided, we may decide not to release personal patient information to the media where it is not in the best interests of the patient, having regard to factors including patient safety and wellbeing, and the privacy of others".
