A three-year-old girl from Canterbury relies on home dialysis to survive, but four machines broke down in one week. The South Island has no backup options.
His mother, Emily Cromie, said the sometimes difficult work was “horrifying” as equipment broke down regularly and she wanted to make a change for other rural families.
Emily said Harper Cromie, from Glenroy, near Darfield, lived a relatively normal life during the day as a cheerful and cheeky girl who made friends with everyone.
However, due to a rare and very aggressive kidney disease, he slept hooked up to a dialysis machine at night.
Like many preschoolers, she was a sleeper and would often knock on cords or set off machine alarms.
As difficult as it was for Emily and Nick as farmers, Emily said caring for Harper was made even more difficult by the regularly breaking machinery that could only be shipped from Auckland.
“They should be blamed, many of them. They make mistakes all the time. If they can't be trusted this much, it's disgusting that they're even on the job,” she said. Ta.
Emily, Harper and Nick Cromie.
photograph: RNZ / Nate McKinnon
Caring for Harper was a stressful, round-the-clock job, especially for Emily.
“Technically, I'm the one who has to hurt her. I gave her injections, I pushed a nasogastric tube into her stomach. It's horrible, I hate it, I cry every time,” Emily said. Told.
“Harper doesn't know. She looked at me and said, 'I'm sorry, I'm sorry,' as if I was punishing her for something she did wrong, but I'm not. It's really hard. That’s it.”
In dealing with all of this, Emily and Nick often felt like they weren't enough when it came to the healthcare system.
Emily said that while the doctors and nurses who cared for Harper when she went to the hospital were wonderful, much of her treatment took place at home, made more difficult by the rural location.
There was no back-up machine in case something went wrong, like Harper had at his South Island hospital.
Kilograms of medical supplies also had to be shipped from Auckland, but were often delayed or put on hold.
Emily considered financing the purchase of the machine herself, but she said that was too difficult.
harper chromie
photograph: RNZ / Nate McKinnon
But the family had some good news.
Harper is scheduled to undergo a kidney transplant in July.
But Emily wanted to fight for others.
“We know about the ridiculous cuts and all the things about our already broken health care system, but we really want to make sure no parent ever has to go through what we had to go through. I am determined.”
Christchurch Hospital pediatrician James Hector-Taylor said providing dialysis to rural patients was a challenge.
Two machines were always delivered to patients under the age of five, he said, as the units were sensitive to movement and could affect their operation.
Although each child has a local pediatrician, Starship Hospital in Auckland is said to have carried out pediatric dialysis planned for the entire country because it was the only place with appropriately trained specialist doctors and nurses. he said.
“Starship is looking at having spare machines closer to patients, but they often go unused, needing maintenance, and are therefore still likely to break down,” Hector Taylor said.
“Our current approach of delivering machines and supplies directly to families continues to be the most effective way to deliver pediatric dialysis treatment.”
In an emergency, family members can always perform manual dialysis, he said.
But Emily said it was very intensive and difficult to do on a lack of sleep, where mistakes could cause complications.
Kidney Health New Zealand chief executive Andrew Baker said he was not surprised to hear of the difficulties the family had faced. Many other rural patients had similar difficulties.
Some people travel four hours three times a week to receive dialysis.
He wanted to establish regional dialysis hubs in more locations to facilitate dialysis.
“We need more dialysis units, we need more chairs, so we need infrastructure, we need more equipment, we need investment in staff financing, we need to make sure they have enough We need to attract these staff by paying them a fair salary,” he said.
