Teen was told the crippling stomach pain she suffered was in her head - it wasn’t

At the start of last year, 13-year-old Amelia Turner was busy. She had started secondary school, made new friends and enjoyed hanging out with them. Her days were filled with books and music. An A-grade science student, she dreamed of working for NASA or becoming a freshwater ecologist. She loved cooking and sewing, disappearing into the family garage for hours to make clothes for her younger cousins on an old Bernina sewing machine.

For her mother Maddy, that seems like a lifetime ago.

Today, Amelia is fed through tubes. She is bed-ridden and one leg is immobile.

Related stories:

“A year ago we were coaching her through friend issues, what to wear and whether her teacher was an egg,” says Maddy. “Our whole world now is focused on making sure she stays alive.” 

In May 2024, Amelia contracted Covid and developed acute chest pains. Fearing she had heart issues, Maddy took her to Waikato Hospital multiple times. She was eventually admitted and diagnosed with costochondritis (inflammation of the cartilage that connects a rib to the breastbone), a condition that mimics a heart attack. Maddy was worried, but confident treatment with steroids would restore her to good health.

But the day after she was admitted, Amelia lost the ability to swallow. Pills, food and even sips of water felt like they were stuck. When tests showed no physical impediments, she was diagnosed with ARFIDS, an eating disorder in which a patient is anxious about eating for fear of choking. She was given a nasogastric feeding tube and referred to a mental health service to address food aversion.

For Maddy, it was ludicrous. “I knew she was not avoiding food. It wasn’t anxiety causing the problems. She was anxious because she couldn’t eat not because she didn’t want to eat.” She is upset the diagnosis continued to frame the way Amelia’s health was viewed through most of 2024, leading to issues of distrust further down the track. 

For months, Amelia was fed through a gastric tube. She tried to swallow, but the pain made her double over so she could only chew and spit. She kept soldiering on. In early December, she performed in her dance company’s end of year recital. 

Frustrated by the lack of answers and the suggestion her daughter’s condition was a mental health issue, Maddy began to research other causes. 

Through a family link, she learned of another girl who had similar symptoms caused by abdominal vascular compressions in which veins or arteries are compressed by surrounding structures causing severe pain. Then she learned such pathologies were often underestimated due to their rarity, the non-specificity of their symptoms, the inability to access scans needed to diagnosis the condition and clinicians’ levels of knowledge. 

She and husband Joe decided to pay for further tests. They booked a scan that cost $5000, knowing they might have to wait for a year for it. 

As Amelia’s condition worsened and her weight dropped dangerously, fate stepped in. There had been a cancellation which meant the scan could be done before Christmas.

The report confirmed what she had suspected. Amelia had Superior Mesenteric Artery Syndrome (SMAS) in which the duodenum is compressed, Nutcracker syndrome (NCS) in which the left renal vein is compressed, May Thurner syndromes where the left iliac vein is compressed, plus the possibility of compression of the celiac artery.

The compressions limit the size of the blood vessel and the amount of blood that flows through to the legs leading to pain and immobility.

On 31 December, Amelia was admitted to Waikato Hospital. It was hoped a different tube, that fed directly to into her small intestine bypassing the compression of the duodenum, would alleviate her pain and help her gain weight. Establishing a fat pad would increase the narrowed angle of the vessels, easing the compression of the bowel, allowing food to pass through and normal blood flow to resume. 

The plan didn’t work. The pain continued despite medications that Maddy says “would have knocked an elephant out” including ketamine, a Class C illegal recreational drug used as an anesthetic.

Amelia’s weight dropped alarmingly. A central line was inserted that delivered nutrients directly to her heart.

Scared to leave her daughter’s side, Maddy took up residence in Amelia’s room, sleeping on a pullout bed. At night, she lay awake listening to her daughter moaning in pain and the constant beep of monitoring machines.

Apart from the pain levels, there were other worrying issues. Amelia had become increasingly withdrawn. The initial assessment that this was likely an eating disorder caused by mental health issues, made her fearful of talking to doctors.

“She was scared she would say something wrong and they wouldn’t believe her or that they would again decide it was all in her head,” Maddy says.

“She refused to speak to any doctor, even those who were 100 percent on her side. When they left, she would pour her heart out to me, telling me about the thoughts she was having and her fear that she would be sick forever.” 

It was left to Maddy to explain the symptoms Amelia was experiencing, balancing being a strong advocate for her daughter while not offending medical staff.

“I hate confrontation. I’m a Libra. But when someone suggested she should not be experiencing such pain with the drugs they were giving to her, I did lose my cool. It seemed, once again, they didn’t believe her.”

Maddy took notes at consultations, asked questions and did her own research, which showed there were no options for treatment in New Zealand.

“Her medical team had done everything to keep her weight and nutrition stable and her pain under control, but that was where it stopped.”The alternative was to travel overseas for surgery. Given Amelia’s complexities, the best option was Germany at an estimated cost of $200,000. 

For the past two months, the family has been fundraising through Givealittle and other charity events. The surgery is booked for 5 August.

Chris Holdaway, who retired last year as head of vascular surgery at Waikato Hospital, has heard many stories like Amelia’s. He has also witnessed the despair of parents of his patients who have to fight for their children to be believed and access treatment.

“I have women who come in here who are tiger mums with their claws out. They have seen their daughters treated as mental health patients; they have heard doctors say, ‘it’s all in her head’, they have been down every avenue to find answers and, when they get to me, they are at the end of their tether.”

It makes him angry and frustrated. 

For 18 months, Holdaway has been pressing medical colleagues, Te Whatu Ora and the Minister of Health to change their approach to the diagnosis and treatment of patients with Ehlers-Danlos Syndrome (EDS) and associated vascular compression syndromes.

He says the current attitude in health circles is “resistant and obstructive".

“There is a chunk of our health service actively resisting this diagnosis and treatment upfront.”

“What that means is patients are told their symptoms are the result of an eating disorder. It is true these patients lose weight; their weight loss can be dramatic and frightening. And the majority are young women. But they are not starving themselves to lose weight. The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.”

In a statement to RNZ, Te Whatu Ora says AVCS, also called median arcuate ligament syndrome (MALS), can be a complication of Ehlers-Danlos Syndrome. It also occurs in other conditions and may arise as a consequence of weight loss.

Te Whatu Ora says a “very careful assessment of how we diagnose and treat MALS in New Zealand is required because the available evidence is of low quality, with no published randomised controlled trials”.

Holdaway says the collateral damage from telling a young person they have an eating disorder is far-reaching. “Their self-esteem bottoms out. Half of the patients end up being treated for mental health issues down the track.”

Two years ago he travelled to Germany to observe the work of the two doctors who will assess and operate on Ameila - paediatrician Dr Thomas Scholbach, based in Leipzig, and vascular surgeon Dr Wilhelm Sandmann who has a clinic in Dusseldorf.

He is aware the doctors’ work has been closely scrutinised. He is also aware the Vascular Society of New Zealand regards the surgery as “experimental and not well-established in medical literature” with mixed results anecdotally.

“I went prepared to believe they were quacks,” he says. 

Instead he refers to them as “trailblazers.”

Of the 27 patients he has so far sent to Germany, the “vast majority” have had improved health and significantly reduced pain. “They have been able to return to school and university.”

But cost is a deterrent: “Only those with wealthy families or financial backing can afford it. I don’t think we should have a two-tiered health system.” 

The alternative of remaining in hospital in New Zealand for months was “at least $1200 a day”.

Holdaway says a team approach is needed. He wants the Ministry of Health to fund and develop a team of experts who can undertake investigations with appropriate algorithms and, when a diagnosis is confirmed, patients be offered treatment in New Zealand or funded to travel overseas. He would like to be part of that team.

Last year, he wrote to then Health Minister Shane Reti asking whether surgery could be undertaken in New Zealand. The Minister said he was taking advice from officials. Holdaway has not heard anything since.

A piece of embroidered art depicting the four types of vascular compression syndromes hangs on the wall of Holdaway’s office.

It was done by Jemima Thompson and her mother Rachel McKenna to acknowledge Holdaway’s support for Jemima when she was diagnosed with vascular compressions as a result of Hypermobile Ehlers Danlos Syndrome (HEDS). 

Jemima’s story is a carbon copy of Amelia Turner’s, with one exception: she has already had surgery in Germany with life-changing results.

When she was admitted to Waikato Hospital in 2023, aged 15, she had debilitating pain and nausea. Like Amelia, she couldn’t eat or drink and she also lost mobility in her legs.

Two weeks after admission, she was told her symptoms was pain hypersensitivity and she was assigned a psychologist.

“They thought I was depressed and didn’t want to get better,” Jemima says. “I had to follow the protocol for eating disorders. I was weighed twice a day. No matter what I said they didn’t believe me. I was a shell with nothing but pain left."

Like Maddy Turner, Rachel believed her daughter was not deliberately avoiding food. But she had an even more pressing reason to determine the cause of her pain. Another daughter, Matilda, had died in 2013 of what she now believes was the same condition.

Her research again led her to EDS and the possibility of abdominal vascular compressions. Following costly scans, the diagnosis was confirmed. A paediatrician put her in touch with the German specialists. 

In April 2023, Rachel and Jemima flew to Germany. Jemima underwent surgery at Clinic Bel Etage in Germany on April 20. The operation, which took seven hours, was done by Dr Wilheim Sandmann, who will operate on Amelia in August.

When Jemima came round from the anaesthetic, the first thing she asked for was a large glass of water. Shortly after, she stood for the first time in months. “Like a baby giraffe,” says Rachel. The blood that had been cut off by compressions flowed to her legs. Fourteen days after surgery she walked to an ice-cream shop.

Rachel stresses it was not a miracle. “It was science.”

Today, EDS still impacts Jemima’s life. It is a chronic lifelong condition with varying severity in each patient. Rehabilitation took a year. She still has pain which has to be managed.

“But it doesn’t stop me living my life.”

She is currently in her final year at high school, heading to university next year to study law and biology. She enjoys tap dancing, playing the flute and musical theatre. She has a car, a part-time job “and incredible close friends”.

But she is also angry. “Being told my symptoms were psychosomatic has had a lasting impact. I’m often in fight or flight mode.”

Jemima and her mother are intent on ensuring other people’s pathway to diagnosis and treatment is easier and more accessible. In February, the pair spoke to health professionals at a global Ehlers-Danlos learning conference in Brisbane and they have been invited to speak to the EDS Society in Britain.

In December, Te Whatu Ora chief medical officer Professor Dame Helen Stokes-Lampard invited them to join an online discussion to share their experiences and concerns. Rachel has not heard anything since. Dame Helen is currently overseas and could not be contacted for comment.