‘My brain is a ticking time bomb’
Paradise woman with rare gene deletion must wait nearly two years for MRI, fears she may not make it to appointment
Every six months, Paradise mom Krystle Vatcher takes her six-year-old daughter, who has autism, for tests.
“Cadyn is non-verbal. She is on risperidone and uses it for behavioural purposes,” said Vatcher.
“There is bloodwork to check her prolactin levels and other tests to see if the medication is going to harm her.”
The last time Cadyn was tested was in February 2023. That test revealed she carries a rare gene deletion called COL4A2.
WHAT IS COL4A2?
COL4A2 can affect vessels in the brain, and those who carry the gene are more susceptible to aneurysms and blood clots.
Vatcher says only 300 people worldwide have received such a diagnosis. It was quickly discovered that Vatcher also carries the gene deletion.
Her doctor ordered both Vatcher and her daughter to get an MRI to check for any abnormalities in the brain. Due to Cadyn’s condition, she was seen within six months.
Vatcher didn’t receive her papers for an MRI until February 2024, nearly a year after finding out she carries this gene.
Vatcher’s MRI appointment isn’t until March 4, 2026.
‘A TICKING TIME BOMB’
“I am furious,” she said, with a crackle in her voice and tears welling in her eyes.
“You have people out here with life-threatening conditions, and this could be life-threatening, too. In this two-year wait, I could have an aneurysm.”
What scares Vatcher the most is the uncertainty of what could occur during her wait time.
“My brain is a ticking time bomb. I am so worried. What’s going to happen if me and my husband are sleeping and he wakes up and I am seizing?” said Vatcher.
She worries that she won’t make it to her 2026 appointment.
“It is a huge possibility. We don’t know, and that’s terrifying,” she said.
FAMILY CONNECTION
While her daughter’s results suggested no abnormalities, Vatcher worries that as Cadyn grows older, that might change.
“What if what’s happening to me happens to Cadyn, too? How bad will it be if it happens to her?” said Vatcher.
COL4A2 is genetic, and Vatcher has seen firsthand the seriousness of the repercussions.
“My mother was 47 when she suffered an aneurysm,” she said. “While it isn’t confirmed she has the gene, we have a strong feeling. Since that aneurysm, my mother has suffered from seizures regularly.”
Vatcher, 42, is just five years younger than her mother was when the aneurysm happened.
MORE SYMPTOMS
Outside of aneurysms and seizures, COL4A2 also causes other symptoms, such as strokes and migraines.
Vatcher said she has begun to experience them all.
“I have always dealt with migraines, but recently I have had migraines where
I go blind in one eye,” said Vatcher.
“I remember my husband asking me what was wrong and I told him I couldn’t see. He told me that I was slurring my words and part of my face was drooping. To this day, I still don’t know if I had a stroke, because I can’t get in to see anyone.”
ADVOCATING FOR HERSELF
Vatcher said because of her symptoms, she has tried to advocate for herself, but so far has had no luck.
“I have called the complaint line several times to say how ridiculous this is, how scared I am, and every time they say I need to have my family doctor resubmit my referral as urgent,” said Vatcher.
During the COVID-19 pandemic, she lost her family doctor.
“It made things so much more difficult,” she added.
NO SOLUTION PROVIDED
Vatcher said the only solution provided to her by the complaint line was to try to book an earlier appointment in Gander or Corner Brook, but because she is on financial support, travel is not an option.
“When I said I couldn’t travel, I said, ‘What if I have a brain tumour?’ and their response to me was, ‘With the wait, this is all we can do.’”
Because she had no luck with the complaint line, she decided to contact Progressive Conservative Leader Tony Wakeham.
RECEIVING CALL
After receiving her MRI appointment, she sent Wakeham’s office an email and heard back from someone on Feb. 23, asking if her matter had been dealt with.
On Feb. 29, 2024, Wakeham called Vatcher to follow up.
Wakeham said there was a delay in getting back to Vatcher because he was travelling, and that after speaking with Vatcher, he called the health authority to address the delays in MRI processing.
Saltwire made a request to N.L. Health Services (NLHS) for information about MRI wait times on Monday, Feb. 26.
As of Feb. 28, NLHS said it was still working on the request.
No further communication was received before press time.
PROVIDING REASSURANCE
Wakeham said he is hopeful Vatcher will be seen earlier.
“I’ve been told that the health authority will be in contact with her,” he said.
Wakeham said the real problem is a lack of communication and reassurance for patients.
“It’s not good enough for us to say you have an appointment two years down the road. We have to do a better job of communicating with people,” said Wakeham.
“In Vatcher’s case, there’s nothing that I could see that has been communicated to her that would give her any type of reassurance.”
POSSIBLE SOLUTIONS
Wakeham says there are solutions that can address the challenges faced by those with lengthy MRI wait times, including policy changes.
“If we’re elected, and somebody requires medical transportation in this province, they will not have to worry about whether they can afford to go,” said Wakeham.
“Government needs to be able to step up and provide that medical transportation.”
MORE MRI EQUIPMENT?
Another option Wakeham says must be utilized is optimizing existing resources for better accessibility or increasing the number of MRIS in the province.
“We need to be looking at how we’re utilizing this technology and how can we better use what we currently have,” he said.
“If the demand is there and we have these huge waitlists of more than two years, it’s time we started looking at how many more MRI machines we need.”
When it comes to Vatcher’s case, Wakeham hopes the health authority will “review her case with her and reassure her she isn’t somebody who has been placed on the back burner.”
As of mid-afternoon on Thursday, Feb. 29, Vatcher said she had not heard from the health authority.