Chronically ill teen told her pain 'wasn't real' by Wellington hospital

Tuesday, 15 August 2023

A chronically ill teenager says she has been left with 'severe medical trauma' after doctors accused her of faking her pain and told her all her issues were in her head.

Fifteen-year-old Eva Baker says her time at Wellington Regional Children’s Hospital in 2022 has led to her losing faith in medical staff and care.

But a Te Whatu Ora Health New Zealand spokesperson says decisions around care are made by experienced clinicians with safety as the highest priority.

Eva was admitted to hospital on June 16, 2022, after months of not being able to eat without vomiting.

She was suffering from pain in her stomach, nausea, headaches and dizziness.

“Throughout the three months I spent on the children’s ward, I was mistreated, medical gaslighted and was inflicted with such severe medical trauma that it now affects my everyday life,” Eva said.

“The people who we believed we could trust and would help us proved to do the exact opposite and made me lose all faith and hope in medical staff and care.”

Doctors determined Eva had an eating disorder and diagnosed her with anorexia. She was put on a nasogastric tube but continued to vomit whenever she was fed through it.

Eva was moved to an adolescent mental health team where she said she was treated like a “naughty child”.

“They were watching me uncontrollably throw up and still accused me of doing it to myself,” she said.

“They were attempting to find anything that aligned even slightly with the criteria to pin the blame on myself and this disorder I supposedly had.”

Eva said she was accused by staff of tampering with her feeds despite being on sleep medication at the time, and stealing syringes that had been taken away by a nurse to be cleaned.

She said she and her mother had regular meetings with doctors, but were never listened to.

“I would leave the meetings having full-blown panic attacks due to the disbelief and medical gaslighting they put us through,” Eva said.

“I felt so deeply alone and isolated as they attempted to fix me of a condition I never had.”

Eva said she was told multiple times to “stop vomiting” and treated like she was doing it to herself.

If she was unable to finish a meal it was blamed on anxiety, and she was told her treatment plan was to “swallow her vomit and just breathe”.

She said doctors said her pain wasn’t real and to stop thinking about it.

“I was force-fed full meals every day just to throw them up and be in extreme pain, and they still believed it was an eating disorder.”

Eva was discharged on August 29, 2022.

'What I still don’t understand is how, yes, initially it could have seemed as though anorexia was my problem but, many months down the line, I was still in terrible pain,” she said.

“My only way of getting nutrition was through my nasal gastric feeding tube and none of the eating disorder plans were working.'

Eva’s mother, Katie Baker, has contacted the Health and Disability Commissioner to register a complaint regarding her daughter’s treatment in hospital.

She was directed to the Nationwide Health & Disability Advocacy Service in the hope that it might resolve the complaint between the parties.

Baker is requesting a detailed written response to her concerns and said she will consider the complaint resolved if her daughter receives a proper diagnosis regarding her chronic illness and acknowledgement for the way she was treated by staff.

She also wants the anorexia diagnosis to be erased from Eva’s file, and an ACC Treatment Injury Claim to be completed, so Eva can receive counselling for her traumatic experience.

Te Whatu Ora spokesperson Jamie Duncan said obligations under the Privacy Act and the Health Information Privacy Code prevent it from commenting publicly about individual patients.

'Further, this case is currently before the Health & Disability Commissioner (HDC) and it would not be appropriate to comment as doing so would pre-empt the outcome of that process,” he said.

Duncan said all decisions around patient care and support are made by experienced clinicians with patient safety and wellbeing as the highest priority.

'Our dedicated clinicians and other health kaimahi [staff] work hard every day to provide expert and compassionate care and support to our patients, and their whānau and support people,” he said.

“We recognise, however, that someone’s health and recovery journey can be difficult, and we empathise with anyone who experiences this.”

One year on, Eva Baker is still coming to terms with her experience.

She has seen a private clinician who has diagnosed her with functional dyspepsia, which refers torecurring symptoms of an upset stomach that have no obvious cause.

Baker is undergoing further testing and early signs show she may have gastroparesis, a condition that affects stomach muscles, or vascular compressions, which is when a person’s blood vessels are under abnormal pressure.

“I’ve come to realise that I’m chronically ill, and I may never be better. I have a private gastroenterologist who is doing plenty of testing and believes me,” she said.

“I am slowly but surely regaining my trust in medical professionals, and I'm living my life to the absolute fullest I can, even in immense pain.”

She said her message to other people with rare conditions who struggle to be believed is that they're not alone.

“When I was in hospital I just felt so alone, they told me that there’s no one that can help you, nothing’s wrong with you, so it just felt like so isolating,” Eva said.

'There's a big community of people out there, and I found so many other people with chronic illnesses. So definitely the fact that you aren't alone and there are people that will help you and will believe you.'

CORRECTION: Eva Baker is 15, not 16, as was originally reported. (Amended at 11.46am, August 16, 2023.)