The daughter of a prominent Kiwi radio talk show host and clergyman is set to fly to Europe for surgery for her Ehlers-Danlos Syndrome after her family took on significant debt and fundraised to pay for the treatment.
Reverend Frank Ritchie, a Methodist minister who is also a broadcaster on Newstalk ZB, told the Herald his daughter Selah Ritchie, aged 17, was in constant pain and couldn’t eat. Without the surgery, her condition would deteriorate.
Ritchie’s case is one of several Ehlers-Danlos Syndrome EDS) stories the Herald has reported on in the past couple of years, as many seek treatment overseas and battle to even seek a diagnosis in the face of accusations of “faking” symptoms.
Stephanie Aston died on September 1, aged 33. Aston was accused of intentionally draining her blood to alter her blood counts, eating disorders and self-harm, that her mother was harming her and that she was faking fainting spells, coughing fits and fevers.
Dr Rachel Palmer, 52, died on November 4. Despite 29 diagnosed medical conditions, she was told she had a borderline personality disorder and anorexia and there wasn’t specialist care for her.
“It’s gutting. We could have been over to Germany, had the surgery, and been back by now. She could have been eating a proper Christmas dinner,” Frank Ritchie said.
“This is just gut-wrenching. She’s worked really hard ... to try and give herself the best possible chance at the other side of her surgery,” he said.
“I’ve watched my daughter fight and work hard while we’ve waited and waited.”
Ritchie said his daughter was academically ambitious and wanted to study at Massey University and enter the publishing industry.
“She managed to pass [NCEA] by the middle of the year, but this latter half, her ability to do any school work completely dropped off.
“Watching her push, watching her life get smaller as she hasn’t been able to get out and spend time with others - that’s been gutting.
“I’m amazed at how she’s handled it,” he said, attributing the teenager’s determination and strength to her mother, Melva Ritchie.
The Herald has seen a forwarded email sent to the Ritchies from the chief medical officer (CMO) at Waikato Hospital, where Selah Ritchie has received some of her medical care, in which the family were told why their HCTP funding application wouldn’t proceed.
In her email, CMO Margaret Fisher said HCTP application forms needed to be lodged by a Waikato Hospital specialist currently dealing with patients in the public sector, rather than from the private healthcare industry.
The rejected application came despite a gastroenterologist, a rheumatologist, a radiologist and two Waikato Hospital vascular surgeons all telling the family the teen needed to get to Germany and writing in support of the HCTP funding.
A spokesman for Te Whatu Ora said cases would only be approved if they met national eligibility criteria.
“The sad thing,” Frank Ritchie said, “is when I read all the other stories that have been covered by the Herald, our journey has been so much better than what others have had to go through.”
Fisher also said the surgery Selah needed “should be considered experimental at present”, based on a recent review by the Northern Regional Clinical Practice Committee, which meant it was not eligible for HCTP funding.
“Please pass on my regrets to the family but the application cannot be progressed at this time,” Fisher’s email read.
Frank Ritchie said: “We didn’t have to fight to get this diagnosis. Everybody, all the professionals, are on board, all saying the same thing. No alternative treatment has been offered, it’s all pointed towards Germany.
“The only obstruction has been the endorsement of the chief medical officer at Waikato Hospital.”
After receiving Fisher’s explanation, Ritchie responded by saying it provided clarity but questions and concerns about the decision remained.
Ritchie said every day was “a real mental game” to get through, stressed about his daughter’s surgery and future recovery.
“There are days where I’m just waiting to get to the next day and my ability to think beyond this is next to nothing. So my chaplaincy work has dropped, as have many other things,” he said.
He outlined to the Herald his daughter’s journey so far: Selah Ritchie started suffering abdominal pains in July. She had all the “usual tests” which ultimately didn’t reveal anything.
“So our GP, who is a very good doctor, she got to the end of her knowledge and so we talked about getting a CT scan. That showed an obstruction in her small intestine, her duodenum.
“I know that there are others who had to go down the track of being told it was psychosomatic, but our daughter showed no signs whatsoever of having any form of eating disorder or psychological issues. The CT scan showed there was a very real problem.”
She was then transferred to a rheumatologist in Auckland, a radiologist in Hamilton, and then a vascular surgeon at Waikato Hospital in October.
“The idea of going to Germany had been floated with us before that by the gastroenterologist as the pathway others had gone down and it was probably what Selah would need. The vascular surgeon at Waikato confirmed it.”
Ritchie said they didn’t know how his daughter’s recovery would go, “we’ll take it day by day”.
Raphael Franks is an Auckland-based reporter who covers breaking news. He joined the Herald as a Te Rito cadet in 2022.