Baby with Down syndrome, whose parents fought to get her care in Canada, has died

Veya Vanderbrugghen, a baby girl with Down syndrome and other medical complexities whose parents fought the Canadian health care system to get her the care she needed, has passed away.

Key Takeaways:

• Krystal Vanderbrugghen believed the Canadian healthcare system was discriminating against her daughter, Veya.

• Veya received care at Sick Kids in Toronto at one point, considered the premiere children’s hospital in Canada.

• At Sick Kids, Veya’s mother was told her daughter would not receive a breathing tube or a living donor liver transplant.

• Vanderbrugghen said it appeared as if doctors were “slow-coding” Veya, and other doctors directly suggested Veya’s parents should consider euthanasia.

• Veya was eventually moved back to her previous hospital to receive care, but she tragically passed away early this month.

The Backstory:

In a previous interview with Live Action News, Vanderbrugghen explained that Veya was born with Down syndrome and a congenital heart defect in December of 2023. After a successful heart repair, Veya’s liver began to have problems, and she also contracted Respiratory Syncytial Virus (RSV) — which is mild in adults, but can be life-threatening for infants.

At Sick Kids, far from receiving the care she needed and deserved, Veya struggled from what appeared to be blatant medical misinformation. She was overdosed with potassium, which nearly killed her, and then was denied a living-donor liver transplant and a breathing tube. One doctor insinuated the liver transplant was denied specifically because she had a disability.

“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, and said the doctor added, “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.’”

Eventually, Vanderbrugghen tried to take Veya to Chicago, where doctors said they could treat her — but Sick Kids refused to send her medical records or even speak to the physicians there.

The Details:

In June, Vanderbrugghen was able to have Veya taken from Sick Kids to McMaster Hospital. In an update to her Instagram page in July, Vanderbrugghen said Veya was improving. But in a tragic update last week, she revealed that Veya had passed away. Her family has not yet been revealed the cause.

Her mother wrote:

Our sweet Veya Hope ran into the arms of Jesus yesterday. Though her earthly body carried limitations, her soul was limitless — overflowing with love, light, and courage. Her name was her calling — Hope. She carried it with her every single day she spent inside those hospital rooms and gave it to all who knew her. She taught us to hold onto it when things felt impossible, to believe when we couldn’t see, and to trust that God’s love is greater than anything we face

While our arms ache without her, our hearts rejoice knowing she is whole and free in Heaven. She is healed, she is dancing, and she is being held by the One who created her.

Veya was laid to rest on August 6 in a graveside service that was well-attended by the thousands of people whose lives she touched.

A “beautiful ending”:

It’s not clear yet what happened, but Vanderbrugghen said their time at McMaster healed the trauma the family experienced at Sick Kids. And she promised to share the incredible experiences they had in Veya’s final moments.

“Watching Veya finish her race was the most heartbreaking and holy experience I’ve ever lived through. I couldn’t have written a more beautiful ending for her if I tried. God was in every detail — His hand so clearly orchestrating each moment, down to the individuals He placed around us in those final hours,” she wrote, adding, “I can’t wait to share more with you in the days ahead — because the ways God showed up left us in awe. It truly felt like heaven met earth in that room.”

Editor’s Note: This article will be updated with further information as it becomes available. Our condolences and prayers are with the Vanderbrugghen family.

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