Little things, big impact

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This article was published 08/08/2022 (1531 days ago), so information in it may no longer be current.

A young heart surgery patient is giving back to the community that helped save her life.

When Siena Smith was 10 months old, she was diagnosed with a condition called ventricular septal defect, which means she was born with a hole in her heart. Her family was told she would have to undergo open heart surgery, but since Manitoba doesn’t have a pediatric cardiac surgical program, Siena’s surgery would take place out of province.

“We were told that they no longer do pediatric heart surgeries on children here in Winnipeg,” says Sabrina Castellano Smith, Siena’s mother.

The Travis Price Children’s Heart Centre in Winnipeg, formerly the Children’s Heart Centre, transfers approximately 170 children annually to other provinces for heart surgery. Most patients go to Edmonton, while some are flown to Vancouver.

Ten years ago, on Siena’s first birthday, she underwent heart surgery at the B.C. Children’s Hospital to correct her congenital heart defect.

While she was there, she received a teddy bear — which she named Luna — which brought her comfort during both her surgery and recovery.

It’s been a decade since Siena’s surgery, but Luna still holds a special place in the family’s heart and shows how far Siena has come, says Castellano Smith. Now a healthy Grade 5 student with no lasting side effects from her heart condition, Luna is Siena’s closest ally.

“Ever since I was little, I’ve always carried Luna around everywhere. She’s like a best friend,” she says.

Last year, Siena asked her mom if other pediatric heart patients receive a teddy bear like she did. So, Castellano Smith did a little digging and discovered that they don’t.

And that’s where the I Love Bear Hugs fundraiser was born.

“We thought, what a great idea for us to start our own fundraiser to ensure that every single child from Manitoba that goes away for surgery has a teddy bear that can provide them with comfort throughout that experience,” says Castellano Smith.

When Siena and her mom started the fundraiser last September, their goal was to collect about 100 teddy bears. But the more money that came in, the more they wanted to go further.

Last December, Siena and Castelleno Smith entered the Western Canadian Children’s Heart Network’s BoostUp, a competition where people across Western Canada pitch ideas on how to help cardiac kids or their families in exchange for funding and support. Siena and her mom presented their I Love Bear Hugs plan.

Did they win? Well, no. And yes.

“[The Western Canadian Children’s Heart Network] wrote us a letter in January. They started off the letter saying ‘unfortunately, we did not choose you as one of the finalists.’ So we were a little bit crushed,” Castellano Smith says. “But then we continued reading the letter and they said, ‘however, we loved your idea so much that we are taking your name out of this competition and automatically giving you the money. We want you to consider rolling this out in other provinces in Western Canada.’”

So that’s what Castellano Smith did.

“I started reaching out to all the heart centres in Western Canada — Saskatchewan, Alberta, B.C. — and connecting with them to determine whether or not they’re currently giving teddy bears (to pediatric patients), and if there’s an opportunity for us to run our fundraiser in each of their provinces.”

Through Castellano Smith’s efforts, Siena was recently invited to Saskatchewan to launch her I Love Bear Hugs fundraiser and participate in the Children’s Healthy-Heart Activity Monitoring Program Saskatchewan (CHAMPS) camp, which offers a summer camp experience to kids with congenital heart conditions from ages seven to 17.

“Siena was invited to meet other children who have had heart surgery or are awaiting heart surgery,” Castellano Smith says. “While in Saskatchewan, we collected more than 200 teddy bears over a one-week period, so it was a great success.”

What started in Winnipeg has now expanded to Saskatchewan, where kids must also travel out of province for heart surgery.

“It feels really good that other kids get to have a teddy bear, just like I did,” says Siena.

Castellano Smith says their time in Saskatchewan was humbling.

“It was an emotional experience for us to see the reaction from both parents and children when they received teddy bears,” she says. “Having a teddy bear through their (surgery) experiences will help provide them with comfort.”

Thus far in Manitoba, Siena has collected teddy bears from family, friends and her Grade 5 class at Balmoral Hall School. As of May, Castellano Smith and Siena have collected more than 300 teddy bears, which have been delivered to the Travis Price Children’s Heart Centre in Winnipeg for distribution.

“Something tangible (like a teddy bear) that children can keep with them throughout their whole surgical journey, I find it often brings a huge level of comfort,” says Dr. Reeni Soni, medical director of Pediatric Cardiology at HSC Children’s Hospital. Dr. Soni was also Siena’s pediatric cardiologist.

Dr. Soni says having a teddy bear also helped her son on his medical journey.

“My son had different kinds of medical problems and he got a teddy bear in that setting,” she says. “And even 10 years later, he still thought of that bear as his protection bear. It was something that kept him safe and free from harm so I think it really does make a difference.”

Attached to every teddy bear that I Love Bear Hugs donates is a small card with a personalized message from Siena detailing her story.

“With the card, what Siena wants is for every child that receives a teddy bear to realize that someone else has also gone through the surgery or through a similar experience — and look at them 10 years later,” Castellano Smith says.

And for those kids that must leave the province for heart surgery, Dr. Soni says it’s extra special to have something from home they can take with them.

“It’s nice that they get the bears in Winnipeg before they leave — it’s like a piece of home that they’re taking with them.”

What’s next for I Love Bear Hugs? Castellano Smith hopes to expand the fundraiser nationwide.

“I’d like to reach out to Eastern Canada, possibly. That’s on our radar. We’ve also been in contact with Calgary and are hoping to start something up in Alberta, too.”

The Smith family is grateful to everyone who has donated to Siena’s cause. For Castellano Smith, this experience has been about how the simplest of things can make a big difference.

“These small little things have such a huge impact on other people’s lives. So, never think that your idea is too small or insignificant,” she says. “This simple I Love Bear Hugs fundraiser has had a huge impact and will continue to have a huge impact on children.”

Anyone interested in donating new teddy bears to Siena’s I Love Bear Hugs fundraiser can email the Smith family at ilovebearhugs@shaw.ca.

sabrinacarnevale@gmail.com

@SabrinaCsays