Baby with rare condition teaches lessons of resilience, unpredictability

Arabnews24.ca:Saturday 28 January 2023 04:09 AM: A bassinet sits beside the couch inside a Drayton Valley, Alta., home that bustles with the sounds of family life.

It is so still inside the bassinet that you would not immediately realize there is a little baby beneath the white and pink blanket — a baby named Amadea who has defied the odds.

When she was born in October, the doctors "gave us an hour — figured she wasn't going to make it an hour," said her mom, Rachel Dempster. 

She was missing the top of her skull, had no visible nose and her brain was unusually structured. 

But she survived. 

"They were all completely shocked by that. Then it was, you know, a day. And then it was a week. A month. They stopped, eventually, counting."

WATCH | Valuable lessons: 

Alberta baby with rare condition teaches lessons of resilience

10 hours ago

Duration 2:09

Baby Amadea has a rare condition that her nurse describes as "undefined." Her parents say that she has defied expectations and taught them lessons of strength.

Amadea is now three months old and her parents say she is thriving like any other baby. They chose her name because it means "God's beloved."

It's unclear if there is anyone else in the world like her.

"Her diagnosis is, sort of, undefined," said Tara Wren, a registered nurse who works in Edmonton's Stollery Children's Hospital.

"There are varied cases that are similar to this, but I would say I, in my time here, I've never seen this exact structure of the brain… The bones of her skull and the structure of her brain are quite abnormal."

Wren is a nurse co-ordinator for the Aid for Symptoms and Serious Illness Support Team, a pediatric palliative care program that provides symptom management, family support and end-of-life care. She joined Amadea's care team shortly after she was born.

She's just her own person and she is incredibly strong— Braeden Dempster, father

The team speaks weekly with the family and meets with them when Amadea is in hospital.

"I would say it's a very unique situation. We don't know ultimately what things will look like for her moving forward, but our goal is to support them based on what their family wishes are," Wren said.

Braeden Dempster adjusts the feeding tube of his baby daughter Amadea.
Braeden adjusts Amadea's feeding tube. (Kory Siegers/CBC)

Rachel says there are mixed feelings about her baby's unique situation. She says it's "cool" that Amadea is one of a kind, but slightly intimidating at the same time.

"They don't really have anything to compare her to. That's a little bit, not scary, but I guess the unknown of that can be challenging," she said.

One thing is clear — Amadea has a fighting spirit.

When she was one month old, her parents took her to the hospital after she stopped breathing for 30 seconds. Amadea had RSV, her parents were told, but she beat it.

She's really taught us how to be strong— Rachel Dempster, mother

Four weeks after that, they say she battled and overcame pneumonia.

"She's just her own person and she is incredibly strong. Honestly, I think she's stronger than even the typical infant," her father Braeden Dempster said.

Tara Wren sits in a chair inside Edmonton's Stollery Children's Hospital.
Tara Wren, a registered nurse at Edmonton's Stollery Children's Hospital, says Amadea's condition is largely undiagnosed. (Kory Siegers/CBC)

Rachel and Braeden have now settled into a routine with Amadea — she receives medication a couple times a day to manage seizures and dystonia, and milk through a feeding tube.

"She tends to be quite a sleepy baby. But she's, for the most part, she's quite happy. She loves to be held," Braeden said.

And Amadea has a special relationship with her sister Adaline, who is about to turn two.

"[Adaline] gives her lots of kisses and likes to rub her head… She's completely in love with her sister," Rachel said.

Supports critical

Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders, says there are approximately three million Canadians living with a rare disease.

She says it's critical for families with a loved one living with a rare disorder to have support.

"We are recognizing more and more that a rare disease is not just a physical disease. It takes a huge toll on people in terms of their emotional, mental health. It takes a huge toll on people in terms of time," Wong-Rieger said.

Baby Amadea sleeps in her bassinet in her Drayton Valley, Alberta home.
Amadea was not expected to live more than a few hours after her birth in October. (Samuel Martin/CBC)

While Rachel and Braeden acknowledge that Amadea's medical journey has been challenging, they say support from their families and church community have helped. Both also cite their faith as sources of hope — and they point to Amadea herself.

"We've had some of those days that are just, I don't know if I can keep going. But then, we surprise ourselves…She's really taught us how to be strong," Rachel said.

Meanwhile, Wren says Amadea has taught the care team some valuable lessons.

"We feel we can predict what the future might hold, and we often have to be reminded that we don't always know," she said.

Adaline Dempster plays on the floor as her parents Braeden and Rachel look on.
Braeden and Rachel watch as their Adaline plays on the floor of their home. (Kory Siegers/CBC)

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