Baby with rare condition teaches lessons of resilience, unpredictability

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."

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.

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.

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.