Mother accused of medical abuse for seeking help overseas for sick daughter
By Ripu Bhatia|
A New Zealand mother says she has lived in "absolute hell" after being accused of medical abuse for pursuing overseas treatment for her daughter who has a rare health condition.
Zalie Doyle, 39, was cleared by Oranga Tamariki, the Ministry for Children, in April of any wrongdoing for taking her 15-year-old daughter, Taylor, for two surgeries in Australia and Germany.
An advocacy group says people with rare disorders and their families are often met with scepticism in the health sector, and this can take a toll on their mental health.
Taylor had suffered from stomach issues her entire life but in May 2021 she became acutely unwell with abdominal pain and nausea. She was unable to eat or drink and had to be tube fed, which led to her becoming malnourished.
READ MORE: King Charles' guards perform special tribute to Tina Turner
"When she got sick, she ended up in hospital... and over the course of the rest of that year, right up until December, she spent most of that time in hospital, and New Zealand doctors couldn't find a cause or a reason for her being unwell," Zalie Doyle said.
"She was tube fed in the end, she couldn't eat or drink, she became quite malnourished, she lost a lot of weight, and they didn't give any diagnosis that was provable, basically."
Doyle took Taylor overseas for treatment because she felt "completely blocked" by the New Zealand health system.
"They refused to do any further investigation, they refused to replace her feeding tube because she'd had quite a lot of issues with it," she said.
"We were totally road blocked."
READ MORE: 'My son's diagnosis saved my life': Dad's lightbulb moment
A doctor in Sydney, Australia, diagnosed Taylor with median arcuate ligament syndrome (MALS), which is when tissue in the chest area presses on the artery supplying blood to the organs in the upper abdomen.
Taylor underwent surgery in Sydney to fix this in March 2022.
READ MORE: Air fryers now 67 per cent off! Here's every deal you need to know about
She then saw a specialist in Germany who diagnosed her with hypermobile Ehlers-Danlos Syndrome (hEDS) and a range of other conditions associated with it.
Taylor underwent surgery in Germany in May 2022.
Following the two operations, there have been rapid improvements in Taylor's health. She is able to eat and drink normally and has returned to a healthy weight.
"When I took her to Germany she was so malnourished her hair had fallen out, she couldn't attend school, she was taking so many medications to manage pain and nausea," Doyle said.
"[Now] she's put on 12 kilos, she goes to school full-time... she eats, she drinks, she's happy."
Doyle said the doctors who treated Taylor in Aotearoa (New Zealand) were quick to put her problems down to a psychological cause like anxiety or stress.
"No one mentioned Ehlers-Danlos to us... even when I presented the possibility that she could have it to her doctors, they declined it. It's like they made up their mind that there was nothing wrong with her, and they weren't prepared to budge on that," she said.
"As a mother, I know my daughter so incredibly well, and when they're trying to tell me that she's too anxious, or she's doing this for attention, or she's having teenage girl problems... they don't know her like I do and that's not who she is."
Doyle and her family were reported to Oranga Tamariki by staff att their local hospital for taking Taylor overseas for further treatment.
"My whole family was investigated, they have said that my children need care and protection, I've had to get a lawyer involved," she said.
"We only three weeks ago got the case with OT closed down, and we're talking this is a year later. It's been absolute hell."
Stuff has seen the letter from Oranga Tamariki, sent on April 5, that cleared the family of any wrongdoing after an investigation.
"The outcome of the core assessment following many actions, information gathering and robust conversation between many people it has been concluded at this time there are no current care and protection concerns that require Oranga Tamariki to remain involved with your family," the letter said.
"Through Oranga Tamariki assessment it has become evident that Taylor's health has improved, and the concerns raised have been superseded by progressively positive outcomes."
A spokesperson said Te Whatu Ora Health New Zealand was unable to comment on individual patients' treatment and care plans for privacy reasons.
"At Te Whatu Ora, the rights, welfare and safety of te tamaiti the child, are our first and paramount consideration. Our health services contribute to the nurturing and protection of children, and we advocate for them as part of our role to promote and preserve health," they said.
"Te Whatu Ora provides an integrated service and works with external agencies as appropriate to provide an effective and co-ordinated approach to any concern about child protection."
Rare Disorders NZ spokeswoman Angela Nielsen said she often hears of people with diagnosed or undiagnosed rare conditions being met with scepticism.
"This can take a significant toll on their mental health when they are already battling other health issues," she said.
"We are currently working with the Ministry of Health on the development of a national rare disorder strategy which will help provide guidance in the health system on how to manage rare disorder cases.
"We need a health system that leaves no one behind, and we hope this strategy will address many of the challenges faced by those living with rare conditions."
This article originally appeared on Stuff and has been republished here with full permission.
?For a daily dose of 9Honey, subscribe to our newsletter here.
