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.
“They were all shocked at that. Then it was a day. It was then a week. A month. They stopped counting eventually.”
Amadea is now three months old and her parents say she is thriving like any other baby. She was named after God’s beloved, which is why they chose it.
It is not known if anyone else has a similar story.
“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 coordinator for the Aid for Symptoms & Serious Illness Support Team. This program provides pediatric palliative care that includes symptom management, family support, and end-of life care. Wren joined Amadea’s team of care shortly after her birth.
She’s her own person and is very strong.— Braeden Dempster, father
The family is contacted weekly by the team, and they meet with them when Amadea’s in hospital.
“I would say that it is a very special situation. Wren stated that while we don’t know what the future holds for her, our goal is to support her family based on their wishes.
Rachel admits that there are mixed emotions about Amadea’s unique situation. Rachel believes it’s cool that Amadea is unique, but also a bit intimidating.
“They don’t really have any comparisons to her.” She said that it was a bit scary but not frightening. However, the unknown can be difficult.
One thing is clear — Amadea has a fighting spirit.
Her parents took her to the hospital when she stopped breathing after 30 seconds. Her parents told Amadea that she had RSV. However, she was able to beat it.
She has taught us how to be tough.— Rachel Dempster, mother
Four weeks after that, they say she battled and overcame pneumonia.
She is her own person, and she is very strong. Braeden Dempster, her dad, stated that she thinks she is more powerful than any typical infant.
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 is quite a sleepy baby. She’s happy most of the time. Braeden explained that she is a lover of being held.
Amadea shares a special bond with Adaline (her sister) who is just turning two.
“[Adaline] gives her lots of kisses and likes to rub her head… She’s completely in love with her sister,” Rachel said.
Supports are critical
Durhane Wong Rieger, president of the Canadian Organization for Rare Disorders (CORDRD), estimates that there are three million Canadians with a rare disorder.
She said it was crucial that families of someone with a rare condition have support.
“We are becoming more aware that rare diseases are not only a physical condition. It can take a toll on individuals’ mental and emotional health. It takes a tremendous toll on people in time,” Wong Rieger stated.
Braeden, Rachel, and Braeden both acknowledge that Amadea’s journey with cancer has been difficult. However they believe the support of their families and their church community has been a great help. Both also cite their faith as sources of hope — and they point to Amadea herself.
“We’ve had some tough days. I don’t know what to do. 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.
She said, “We think we know what the future will hold. But we frequently have to remind ourselves that we don’t always see the end of the road.”
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