A family is fighting to get their daughter with Down syndrome the health care she needs, as the Canadian health care system pressures them to end her life.
Key Takeaways:
- Doctors have suggested Medical Assistance in Dying (MAID); in response, Veya’s mother is now trying to obtain the necessary medical records to take Veya to Chicago in the United States for lifesaving health care.
- Veya has been denied a living donor liver transplant despite all of her care teams believing she is a good candidate; her family has been given little reasoning — and flimsy reasoning, at that — as to why.
- Veya’s family has received indications that the denial is actually rooted in disability discrimination.
- One of the doctors that had been treating Veya refused to insert a breathing tube, though she had successfully gone through the process of intubation and extubation before. Another suggested they allow Veya to “die with dignity” — meaning euthanasia.
- Veya’s family believes medical staff is “slow coding” her by not responding quickly to urgent situations, not meeting regularly with the family as required, and more. She was even overdosed with potassium and nearly died at one point.
- Veya has just been transferred to another hospital in Canada in the hopes of receiving better care, away from a hospital considered the premier children’s hospital in the country.
The Details:
Krystal Vanderbrugghen gave birth to her daughter, Veya, in December of 2023. She was born with Down syndrome and a congenital heart defect (CHD). Though Veya was able to have a successful heart repair, she then began experiencing complications with her liver.
In an interview with Live Action News, Vanderbrugghen said Veya is a medically complex child, but her liver has been an ongoing problem, which took nearly a year to diagnose.
As the hospital attempted treatment with multiple procedures last year, Veya then contracted Respiratory Syncytial Virus (RSV) — which is mild in adults, but can be life-threatening for infants, the elderly, or people with compromised immune systems. “That really knocked her down,” Vanderbrugghen said.
But then, this year, something even more frightening occurred.
“… [T]he more alarming thing that happened was she was overdosed on January 6th of this year with potassium… 10 times the amount of what she normally receives,” Vanderbrugghen told Live Action News. “… [S]he usually gets two doses of potassium in a day. Each are drawn up as 1.5 milliliters. And on that day, she got two syringes filled with 15 milliliters of potassium. So that sent her heart rate to 350 beats per minute, and they had to use cardioversion shocks on her three times to stabilize her.”
Initially, Vanderbrugghen assumed it was an honest mistake. But due to subsequent events, she’s now questioning if it was truly an accident.
Denied a live donor transplant
Just two weeks after this terrifying incident in January, the family met with Veya’s team of doctors treating her liver condition. “… [E]verything we’ve done so far has not been successful,” said Vanderbrugghen. “And that’s when we learned that she was denied a transplant, which left us questioning a lot of things.”
The reason for the family’s confusion is because all of Veya’s “individual system teams — like cardiology, nephrology, respirology, all of them — said she would do great, and she’s allowed to go for the liver transplant,” she said. The transplant team seeks feedback from those teams to help determine whether a transplant is a good course of action.
“But [the transplant team] decided that they were looking at the big picture and said no,” Vanderbrugghen said. “And so I’ve been asking for six months, what is this ‘big picture’?”
The only reason she was given at first for the transplant denial is that one of the GI team doctors claimed Veya would have “a lot more outpatient appointments.”
Of course, this made no difference to Veya’s family. “We already have a lot as it is,” Vanderbrugghen said. “That would not stop me from treating her.”
When Vanderbrugghen challenged Veya’s medical team, she said she was then told that the doctors “need to think about the live donor. If it’s not successful, we don’t want to put them through it.”
Vanderbrugghen argued that “consenting adults” can choose whether or not to take the risk, “knowing that it may work or it may not work” — and urged the transplant team to leave the decision to the donor or donors.
In response, the transplant team argued that Veya had “lived her whole life in a hospital” and is “not strong enough to do this.”
No matter what Vanderbrugghen says, the team has remained unwilling to give Veya the lifesaving transplant she needs from a living donor.
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Discrimination due to disability
Vanderbrugghen began to suspect that Veya’s disability was affecting her treatment — and a doctor discreetly affirmed that fear.
When she mentioned her suspicion to one of Veya’s medical teams, she said, “I can’t help but shake this feeling that maybe Veya’s genetic diagnosis is also influencing transplant in their decision making.”
The doctor who had been caring for Veya reportedly replied, “I think, Mom, you know, the answer to that…”
“And I said, ‘I realize you can’t say yes or no, but you just confirmed it right there that, yes, they are looking at her diagnosis of Down syndrome as to help decide whether or not she’s a candidate,” Vanderbrugghen recalled.
According to Vanderbrugghen, Canada does not allow transplant discrimination on the basis of disability. Yet it still appears to be happening for her daughter — and it has been growing worse.
The liver specialist has failed to meet with the family every two weeks as required, and doctors have continued trying to deprive Veya of needed medical care.
“It all clicked”
Vanderbrugghen said Veya was admitted to the hospital a few times during cold and flu season “with the harder hitting viruses like RSV, influenza A, and paraflu.” But Veya’s current stay, which began on April 26th, has her “questioning everything.”
… [T]hree days into this admission, Veya just really needed some extra [breathing] support with a BiPAP machine. I never saw a need for Veya needing a breathing tube this time around. She didn’t need it for influenza, so this should have been a quick little in-and-out visit with PICU.
But three days into it, one of the ICU doctors, who has a background in ethics and laws, decided to tell me that if Veya required a breathing tube, she would not be able to receive one during this admission. And when I asked him why, he said because he felt like it would do more harm than good, and like she would not be able to successfully extubate.
But Veya, and her history of being intubated, has never failed extubating, ever…. She is allowed to have a breathing tube.
Concerned, Vanderbrugghen reached out to patient relations with few results. She said the hospital mistreated Veya, sending her into another medical crisis — and they refused to give her a breathing tube, even as her oxygen levels dropped.
“I ran out and I found someone and I said, ‘Look, like she needs the breathing tube now, and there’s no urgency. What is going on here?’ It was as if time stood still and truly they were dragging their feet,” she said, noting that she was again told they would not intubate Veya, and the staff continued to resist other interventions Veya needed, such as blood transfusions and monitoring for seizures.
Then, one day, the continued denial of proper care for Veya all made sense.
“One ICU doctor said to me, we have to look at Veya, and all that she is and all that she was born with,” Vanderbrugghen recalled.
Then he told her, “You know, Mom, you can admit when enough is enough. And when you’re tired, it’s been a really long road for you guys. There is something about allowing someone to die with dignity.'”
“And when he said that, it all clicked,” she noted.
When she discussed Veya’s January potassium overdose with the investigation team, she was told the mistake “was missed by four pharmacists and two nurses.”
“So it went through six different people, and still ended up being given to Veya. So I do believe even that was intentional and was not an accident,” she said. “It would be an accident if you gave her two milliliters instead of 1.5, but you did 15.”
“I have a lot of concerns,” she said. “Here in Canada, there’s this big push for MAiD [‘medical assistance in dying’], euthanasia, all that stuff. It’s scary to see where it’s going, and I do believe that they are trying to stealth euthanize Veya — 100%.”
All of the evidence, said Vanderbrugghen, adds up to nothing good. “They’ve been negligent on so many fronts: they dehydrated her at the beginning of this stay… the potassium overdose — 10 times the amount… how do you accidentally do that…?”
Though she knows medical professionals can make mistakes, she notes that “… [I]n their line of work, when you make a mistake, it can literally be life or death, so it’s just scary….” And it brings her no comfort to know that “one of these doctors sits and advocates on the main panel for MAiD for minors.”
As of 2024, Canada had the second highest death rate globally for MAiD.
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Slow Code and the Pressure to Die:
Vanderbrugghen believes hospital staff are trying to end Veya’s life by slow code — an intentionally slow response to life-threatening situations in the hopes that the delay will lead to a patient’s death.
She said slow coding “happens when the team of doctors and the family don’t see eye-to-eye on a care plan. So if the team of doctors don’t see that Veya’s going to live a long, typical, healthy life — she could live maybe three years in their eyes — and they don’t want to waste their resources.”
She also feels the medical team sees Veya, a medically complex child, as someone who would be a financial burden on the system because she will likely need lifelong care.
A prisoner… or a patient?
Vanderbrugghen wants to bring Veya to Chicago for care, where doctors have told her they would be happy to treat Veya. But Sick Kids in Toronto — “Canada’s most research-intensive hospital and the largest centre dedicated to improving children’s health in the country,” according to the hospital’s website — is standing in the way. Vanderbrugghen told Live Action News:
Trying to get her records has been an absolute nightmare from Sick Kids. They have not been very cooperative with that.
We’ve been trying to get this ball rolling… and there’s still many missing pieces to her records. Chicago has actually asked to speak with the team here at Sick Kids.
I did say to them… I don’t think I’ll be able to even line that up for you guys, because I can’t even talk to them. And I’m within the four walls here.
I said, our regular unit that we hang out in when we’re not in ICU, they beg and plead for her liver team to come by and assess her when there’s changes today. We don’t see them. We don’t see them for weeks.
The hospital, she believes, is trying to cover its own negligence and push Vanderbrugghen toward choosing MAiD for Veya.
She has discussed the family’s struggles to get care for Veya on her Instagram page and says the hospital is aware that she has turned to social media, since “we’ve exhausted every avenue within the hospital to try to get help.”
She added, “I’ve gone through every channel, every avenue, to try to fix this, and for some reason, they just want to keep adding gasoline to the fire, and I’m trying to put it out.”
Then, on June 25, Vanderbrugghen posted to her Instagram account, showing that they had just removed Veya from Sick Kids Toronto by ambulance, and it appears they were transferring her to McMaster Hospital, where Veya has received care before. Vanderbrugghen wrote in the caption:
We didn’t leave a hospital
We left a system that failed our daughter
That saw her diagnosis, not a human being
That gaslit us and tried to coerce us into letting our daughter die while we begged them to care and help her.
That caused harm and called it “protocol”
That almost killed her by a lethal overdose of potassium
This was a place that was supposed to protect her, but instead we are having to
protect her from it.
So we have decided to leave.
Not quietly
Not gently
Because walking away was the loudest truth we could speak.
We will never let them write our story in fear.
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The Bottom Line:
For Vanderbrugghen, the entire ordeal is just further proof that Veya has a target on her back — one that has been there since the moment doctors diagnosed her prenatally with a heart defect.
“They offered me three times to terminate her because she was high risk for Down syndrome,” she said. “Nobody had it confirmed. I didn’t do an amniocentesis test. I didn’t do any of that. And so they based that on the cardiac defect that they found. They offered three times and said ‘you can start over.'”
“And I said, ‘You need to put in my charts to stop asking me that, because I’m going to carry her all the way, and I’m going to love this child,'” she said.
Editor’s Note: A GoFundMe page was set up in November 2024 to assist Veya’s family with their needs during her care. That page is still active and accepting donations, and also details more of her health struggles.
