A newborn Banff baby is fighting for her life in a Calgary hospital as she waits to get bigger and stronger to allow for open-heart surgery. Weighing just over 1.
A newborn Banff baby is fighting for her life in a Calgary hospital as she waits to get bigger and stronger to allow for open-heart surgery.
Weighing just over 1.81 kilograms, Aurora Beauregard was born six weeks premature on April 15 by way of emergency C-section to parents Hayley Beveridge and Casey Beauregard.
Aurora has been diagnosed with 22q11 deletion syndrome and has a hole in her heart – a serious, life-threatening heart condition. Doctors are waiting for her to gain more weight and get stronger before she is transferred to Edmonton for open-heart surgery.
Beveridge, who is with her newborn baby every day at the Alberta Children's Hospital NICU in Calgary, describes three-week-old Aurora as small, but mighty, and an incredible fighter.
“She's very strong, and I mean in the physical sense, kicking at a diaper change, etcetera,” said Beveridge. “She is also adorable and very cute.”
In a nutshell, the arch that takes blood to the bottom half of a body, known as an interrupted aortic arch (IAA), never formed in Aurora's heart. She also has a large hole in her heart between the left and right side, which is called a ventricular septal defect (VSD).
The plan is for Aurora to be 2.5kg before open heart surgery, at which time she'll be transferred from Calgary to Stollery Children's Hospital in Edmonton. She will stay there until doctors are 100 per cent certain they don't have to open her chest again.
Aurora will then be taken back to the children's hospital in Calgary for recovery. If all goes well, it's hoped she will be home in Banff with her family by mid-July with heart surgery concerns behind them.
For the rest of her life, a cardio team will closely follow Aurora's progress. Her type of 22q11 deletion syndrome is very much a wait-and-see game, as doctors don't know how it will affect her as she develops and grows.
“I want her to know she's special with her heart and now her syndrome also, but that doesn't mean she will get treated any differently as a person by everyone around her,” said Beveridge, who is originally from Australia.
“Yes, she has a serious life-threatening heart condition, but it doesn't make her who she is. It doesn't define her.”
The last few weeks have been an emotional rollercoaster for Aurora's parents, with Beveridge noting things can change quickly.
For example, over 36 hours last week, Aurora clinically went into further heart failure. Her heart rate and breathing both increased. But she's been gaining weight again since.
The medical team has created a necklace for Aurora, which is called “beads of courage.” She earns a bead each time she achieves a new milestone or gets poked by needles.
In the beginning, Beveridge was taking everything hour-by-hour.
“At times, I still do as things can change so quickly, and at other times, it's just day by day,” she said.
“One blood test or an hour of having trouble breathing changes everything. It certainly puts life into perspective for you.”
Beveridge sleeps on a couch every night in Aurora's room.
“I can hold her next to her crib. Really that's how far the cords allow me to go with her,” she said.
“I have a chair placed by her crib and I collect and pick up all her cords and then pick her up and try and get a pillow sorted and then place her cords down and around the right way, which allows me to put her on my chest for some skin to skin.”
Dr. Jane Fowke, Beveridge's family doctor who delivered Aurora, discovered Aurora's heart defect on an ultrasound at 22 weeks, leading to many appointments and multiple doctors. The family says Fowke has been an amazing support.
Beveridge also gets support from other moms and other parents in the heart and 22q11 community, and she refers to them as “my village.”
In addition, Beveridge's mom has flown from Australia to care for Zara, Aurora's two-and-a-half year old sister, which allows her to spend time with Aurora.
“Without her, I couldn't be doing any of this,” Beveridge said of her mom. “And, of course, my husband, who is the glass half full compared to empty attitude, reminds me it's all going to be OK and we can do it together.”
Knowing about Aurora's heart before her arrival, Beveridge said they started to familiarize big sister Zara with hospitals and doctor exams.
Despite being uprooted from her home to be in hotels, and now Ronald MacDonald House in Calgary, Zara is doing great, said Beveridge.
“The house has allowed us to be able to bring structure and routine back into her life as Aurora's arrival was very unexpected,” she said.
Meanwhile, nurses refer to Aurora as the “headband baby” given Beveridge puts a new headband on her every day.
“I'm trying to make this experience as normal as possible as these are the things I would be doing with her at home if we were there,” she said.
“She also has her own blankets that we use on her bed, which I think also is me trying to be as normal as possible. But really, living in a NICU is not normal at all, but we're trying to make the best of it.”
Family members have started a campaign to seek donations and items to create a care package for the family. The family needs help with day-to-day expenses, along with accommodation costs for extended stays in Calgary and Edmonton.
They'd also welcome items such as gift cards for groceries and gas, for example.
If you would like to donate, people can e-transfer money directly to Beveridge at [email protected]
People can also send a private Facebook message to Beveridge and Beauregard and follow Aurora's progress on the page – Aurora's special heart.
