Mother's mission to spare others from condition that saw her daughter starve to death
- Kelly Smith
- Sep 8, 2024
- 4 min read
A Whangārei mother whose daughter starved to death hopes a new device being developed could prevent others from the same “unimaginable” death.
Jo Hill’s 23-year-old daughter Ruby died from gastroparesis in 2019.
According to the Mayo Clinic, gastroparesis occurs when the muscles used to move food through the stomach become paralysed, preventing digestion.
Patients with the condition, which has no cure, struggle to maintain weight due to their body being unable to absorb nutrients.
Ruby, who was training to be a pilot, had not long received a medical certificate to say she was healthy and fit to fly when she came down with appendicitis and had surgery to remove her appendix in 2015.
“It was within days that she realised something was dramatically wrong.
“She had terrible nausea, vomiting, she couldn’t keep food down. It was a steady decline.”
After six months, a GP suggested she “just had a tummy bug”. Other doctors said she had anorexia and that it was “all in her head”, Hill said.
“She just loved food, [so] that just couldn't have been more further from the truth.
“It was just the continual battle to try and get care. But the longer it took, the worse everything became.”
After three years of being unable to eat, Ruby starved to death. Hill described her daughter’s death as “unimaginable” and “very painful”.
“The last month was very calm, peaceful and loving. But prior to that, she’d been pretty angry that this was happening and that nobody was doing anything.”
Keen to continue Ruby’s legacy as a passionate advocate for those experiencing similar gastro issues, Hill launched Ruby’s Voice in 2021, a trust with the aim of supporting patients and research into gastroparesis.
“It just became more and more vital that I continued her legacy in that way.”
Ruby’s Voice recently provided a scholarship to gastrointestinal researcher and University of Auckland PhD student Peter Tremain, who will spend a year at the Massachusetts Institute of Technology (MIT), which is renowned for its gastrointestinal device development laboratory.
Tremain, who is studying with the Auckland Bioengineering Institute (ABI), will be working to develop an endoscopic device which would hopefully allow for quicker diagnosis for gastrointestinal patients.
Gastrointestinal disorders were “very poorly understood”, he said.
ABI researchers, led by senior research fellow Dr Tim Angeli-Gordon, discovered malfunctioning electrical signals in the gut can cause pain, nausea, vomiting and diarrhoea.
“In the last decade, the electrical activity in the stomach has come out as a possible fundamental cause for some of these disorders and opened up new pathways that we can target,” Tremain said.
The device is an adaptation of a cardiac tool used to measure electrical signals, similar to that of an electrocardiogram (EKG).
Tremain hoped his time at MIT would help him figure out how to adapt the device for the much bigger stomach organ and how to reduce noise which can obscure recordings.
“It's to develop a second iteration device and get it as close as we can to a commercially or clinically deployable device,” Tremain said.
Tremain, who originally studied to be an engineer, said he was enjoying the human element of the research.
“There's a wide range of patients that could benefit from electrically based diagnosis and treatment.
“I love being able to interact with patients and talking through their journeys as well, and seeing their perspective on the work that we're doing and how excited they are to have something in the future that could possibly help them.
“You put a lot more value on your work with a mission like this... because it can make a huge difference for people.”
Ruby was already in a malnourished state when she was diagnosed with gastroparesis, Hill said. When she died, she weighed just 22kg.
Earlier diagnoses could have saved her life.
Ruby knew for quite some time that should would die from the condition. While in palliative care, a psychologist told her “all she needed to do was gain a couple of kilos”.
“They would have a five minute interaction, a very superficial five minute interaction, and decide that, again, it was anorexia and it was all in her head.
“We went through a real emotional and mental battle within the health system.”
Ruby and Hill believed she may have had connective tissue disorder Ehlers-Danlos syndrome, which can cause gastrointestinal issues, however doctors were reluctant to look into it, questioning why Ruby would want to be diagnosed with another incurable disease.
“There’s no curiosity,” Hill said.
“I think that we have a culture in our hospitals now that can be quite dismissive. The patient is not the centre of care.”
Hill knows of other women with similar gastrointestinal issues, who have also been dismissed as having anorexia.
“There's a couple of girls who are in very critical care at the moment, who are having exactly the same professional bias applied to these things.”
She hoped Tremain’s research and device will stop others experiencing the same traumatic death as Ruby.
“You can’t comprehend that someone can starve to death in our society.
“I'm still seeing it ongoing, which just horrifies me.”
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