HEROES - Spring 2019 by Stollery Children's Hospital Foundation

STORIES FROM THE STOLLERY CHILDRENâ&#x20AC;&#x2122;S HOSPITAL FOUNDATION

SPRING 2019

UNDER ONE ROOF

Making access to mental health support a top priority

INNOVATION IN ACTION

EASY WAYS TO DONATE

Meet two Distinguished Researchers doing vital work for kids

Little

FIGHTER Having already tackled multiple health challenges, Cameron Miller is a five-year-old dynamo with a hopeful future

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rific stollerific.com | #stolle

Share your thanks Often someone makes a lasting impression during your time at the Stollery. Your donation is a way to say thank you to the person or team who helped you when you needed it most. Your gift supports specialized equipment, training, research and programs at the Hospital.

Visit stollerific.com or call 780.433.KIDS (5437)

HEROES MAGAZINE | SPRING 2019

Contents

SPRING 2019

FEATURES 10 LITTLE FIGHTER Born 14 weeks early, Cameron Miller faced a number of extreme complications in his first six months. But thanks to the valiant efforts of a multidisciplinary Stollery team, a loving family and his own fighting spirit, Cameron, now 5, is embracing life with a ready smile.

16 PARTNERS IN HEALTH

DEPARTMENTS 6 FOUNDATIONS

28 HOSPITAL PORTRAIT

38 SPECIALIST

From Stollery Superstar birthday parties and fun runs to an all-night wake-a-thon and the Foundation’s wedding donation program, a variety of inspiring fundraising initiatives help to support Stollery kids.

As executive director for critical care and respiratory therapy at the Stollery Children’s Hospital, Kristy Cunningham brings invaluable expertise to five separate Stollery units.

Dr. Natalie Anton, divisional director of the Stollery’s pediatric intensive care unit (PICU), shines a spotlight on the Hospital’s newly renovated PICU.

9 EVENTS

30 TEAMWORK

41 FROM THE HEART

The hematology and oncology departments at the Stollery Children’s Hospital share a vision that puts compassion and knowledge at the forefront of everything they do.

Alberta businessman Ryan Pomeroy is playing a significant role in bringing a Stollery standard of care to a new neonatal intensive care unit in his hometown of Grande Prairie.

Mark your calendars for these upcoming fundraising activities. COVER PHOTO BY COOPER & O’HARA

15 GIVING THANKS The Foundation’s Stollerific program allows families to show their thanks by making a donation in honour of a Stollery caregiver or team — and it just received its largest donation yet.

37 PAYING IT FORWARD Inspired by the level of care and compassion they experienced at the Stollery Children’s Hospital, the Marrelli family has found many meaningful ways to show their appreciation.

42 SPECIAL CONNECTIONS Teneesha Levy, grand-prize winner of the 2018 Mighty Millions Lottery, has a unique connection to the Stollery Children’s Hospital.

Since 1984, the Children’s Miracle Network has provided vital support to kids in 170 hospitals across North America, including the Stollery Children’s Hospital.

20 FUNDING INNOVATION Through the Stollery Science Lab’s Distinguished Researchers program, Dr. Lonnie Zwaigenbaum and Kate Storey are able to take their respective research in children’s health to the next level.

25 CLINIC COLLABORATION With the generous support of Foundation donors, the Stollery’s IBD Clinic is helping to lead the way in diagnosing and treating kids with Crohn’s disease and colitis.

34 IMPROVING ACCESS After struggling with mental health issues as a teenager, Annie Belley hopes the new child and youth mental health centre planned for northern Alberta will allow other young patients easier access to specialized care.

STOLLERYKIDS.COM

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SPRING 2019 • VOL 7 • NO. 1

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

It Takes Trust to Transform Children’s Health M

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Stollery Children’s Hospital Foundation 800 College Plaza, 8215-112 St. NW,

PRESIDENT & CEO

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Mike House MBA, ICD.D Stollery Children’s Hospital Foundation

We’re proud to share with you our recent accreditation with the Imagine Canada Standards Program Trustmark. This designation shows our commitment to the highest standards of accountability, transparency and governance.

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THIS ISSUE OF HEROES IS SPONSORED BY

Dr. Carina Majaesic, University of Alberta and Stollery Children’s Hospital About the Stollery Children’s Hospital Foundation The Stollery Children’s Hospital Foundation advances children’s health care right in your own backyard by funding specialized care at the Stollery Children’s Hospital: stateof-the-art equipment and facilities; sub-specialty training; leading-edge research; and specialized pediatric programs that improve family-centred care, child and youth addiction and mental health services, and patient and family outcomes. Together, we can give kids the best chance, anywhere in the world, to live a long and healthy life.

HEROES MAGAZINE | SPRING 2019

All fundraising totals are listed as gross unless otherwise specified. For information on fundraising targets and expenses, please call the Foundation at 780.433.5437.

welcome from the president & ceo MIKE HOUSE, PRESIDENT AND CEO OF THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION, WITH YOUTH MENTAL-HEALTH ADVOCATE ANNIE BELLEY AT THE FEBRUARY 2019 ANNOUNCEMENT OF THE FOUNDATION’S FIVE-YEAR FUNDRAISING CAMPAIGN IN SUPPORT OF A NEW MENTAL HEALTH FACILITY IN EDMONTON.

EDITOR’S NOTE: The provincial government deferred this capital project in advance of its 2020 budget

reason our Foundation and its donors are committed to long-term investments in child and youth mental health. They’re also the reason why we’ve invested millions over the years to help advance child and youth mental health services, from pet therapy and music therapy programs at the Stollery that help kids with acute and chronic conditions, to more than $4 million to fund 85 pediatric mental health research projects at the University of Alberta since 2007. Research shows us that mental and physical health are linked. And that brings me to the third number. We recently asked our donors to rank the importance of a range of health-care Alberta, and 92 per cent of respondents across northern Alberta said children’s mental health is the number one health care priority for them and their families. So when the Government of Alberta approached our Foundation for a

PHOTO BY COURTNEY GILLIS

Forever Linked To Mental Health Care For Kids And Youth

hree numbers: 14. 70. 92. On their own, they are simply double digits, but together they tell an important story about children’s health in Alberta, cally, the mental health care of kids and youth in our province.

Did you know that half of all people who develop chronic mental health disorders show symptoms by the age of 14? Research also shows that 70 per cent of mental health problems begin in childhood. It’s these two numbers that are the

kind, specialized addiction and mental health centre for children and youth that will proudly bear the Stollery name (see story on page 34), we seized the opportunity and have launched a fundraising campaign to help more kids and youth — like Annie (pictured) — get the care they need, when they need it. Our goal is to help change how addiction and mental health care for children and youth is thought about, talked about and delivered in Alberta, and with your help, we can give more of them the best chance at a long and healthy life. MIKE HOUSE, MBA, ICD.D President & CEO, Stollery Children’s Hospital Foundation

STOLLERYKIDS.COM

COMMITTED TO CARING A closer look at four inspiring fundraising initiatives BY VICTORIA LESSARD

STOLLERY SUPERSTARS BENJAMIN COGGLES, at four years old, has already raised $1,465 for the Stollery Children’s Hospital Foundation. His two-year-old brother, Joshua, has raised $610. Each year, these two Stollery Superstars ask friends and family to donate money to the Foundation instead of bringing gifts to their birthday parties. For mom Emily Coggles, the fundraisers began as a way to bring a charitable aspect to the traditional birthday party — but it hit closer to home after Joshua himself became a patient at the Stollery. In June

2018, he underwent a minor surgery to clear a clogged tear duct. Collectively, birthday parties have a significant impact on raising funds for the Stollery Children’s Hospital Foundation — in 2018 alone, 300 birthday celebrants donated $109,000. Coggles hopes that by engaging Benjamin and Joshua in philanthropy now, it will help them understand the importance of giving back throughout their lives. It’s also fun: Benjamin appreciates that he gets to have a really cool celebration at the

Foundation — including writing his name on a giant cheque and having a star put on the Superstars wall. This year, he learned the money he raised would go toward the Stollery’s pet therapy program.

“He wanted a tarantula to [be added to the program],” says Coggles. “We talked him out of that because we didn’t think it would be as cuddly. We said, ‘It’s a very nice idea, but the Stollery might have to stick to dogs.’ ”

SEPTEMBER 15, 2018, MARKED the sixth year of the Northern Alberta Neonatal Program’s NICU Fun Run in the Park for the Stollery — and the first time it snowed during the event. Despite the weather, approximately 200 hardy Albertans braved the cold to participate in the two- or five-kilometre walk or run. Launched in 2013 by Dr. Po-Yin Cheung, the neonatologist and divisional director of the neonatal intensive care unit (NICU), with the help of Shelly Wold, administrative assistant for the Northern Alberta Neonatal Program, the NICU Fun Run in the Park was created as a way to bring

HEROES MAGAZINE | SPRING 2019

NICU “graduates” and their families back together with NICU staff. It’s both a celebration for families that have gone through time in the NICU and a fundraiser for current and future NICU patients. “Seeing [the NICU graduates] who are now doing very well — it’s a very rewarding event,” says Cheung. Prior to the run, fun and games abound. Families can take a photo in the photo booth, tour inside an ambulance, listen to live music, and even take a Zumba class. “It’s joyous,” says Wold of the event and its atmosphere. “It’s a time for people to gather.”

To date, the run has raised $133,789 for the Foundation. The money goes toward research and education through the NICU Education Fund, the NICU Research Travel Grant and the Neonatal Research Grant. The next run takes place on September 21 — and hopefully, it will be warm and sunny this time around!

NICU FUN RUN PHOTO BY KRISTY WOLFE PHOTOGRAPHY

NICU FUN RUN IN THE PARK

foundations STAYING UP FOR THE STOLLERY IT WAS AROUND 8 A.M. on Saturday, December 1, 2018, when 98 sleepy students trickled out of Barrhead Composite High School. The students had just finished participating in Staying Up for the Stollery — the school’s first-ever wake-athon in support of the Stollery Children’s Hospital Foundation. The event, which had officially begun the day before at 4 p.m., saw the students stay up for a total of 24 consecutive hours (when taking their school day into account). Teachers Michael Smith and Shawn Dewar are the masterminds behind the fundraiser. Both had held various informal fundraising initiatives in the past, but in 2018, they decided to focus their efforts on something that would have a direct impact on the school, as a number of

students have been patients at the Stollery Children’s Hospital over the years. Smith and Dewar also wanted to create an event that would include any students who wanted to help, no matter their personal interests or talents. “For kids who were feeling a bit disconnected from the school, [Staying Up for the Stollery was] a chance to contribute in a positive way and make them feel good about doing something for the larger community,” says Smith. During the wake-a-thon, video game tournaments in the gym and door prizes helped the students stay awake and kept the excitement running high. Collectively, the group raised $8,800. Students were each asked to raise $20 to participate, and one enthusiastic student raised $1,400 alone. Students also asked

the surrounding community for donations, or had donations pledged on their behalf on the Foundation website. Smith and Dewar are looking forward to growing the event. They have their sights set on having 150 participants take part in the next wake-a-thon and raising at least $10,000. As for the students? “The following Monday they were asking when we could do it again,” says Dewar.

STAYING UP FOR THE STOLLERY PHOTO BY DARCIE EAMON; BIG GIFTS PHOTO BY NATALEE PON

BIG GIFTS FOR LITTLE LIVES LINDSEY KEMP was feeling helpless. She’d given birth to her son, George, in May 2016, and, five months later, he was diagnosed with dilated cardiomyopathy, a serious disease in which the heart struggles to pump blood. George was quickly put on the heart transplant list, and all Kemp could do was wait. Then, in early 2017, she decided to take action by organizing an event to generate more awareness about organ donation and to raise money for pediatric heart transplant research for the Stollery, where George is being treated. Kemp created Big Gifts for Little Lives, a 5 km run and walk, silent auction and family event held in Edmonton’s Rundle Park.

Just two days after the event was announced, Kemp got exciting news: a donor heart had been found for George. Two days after that, on March 8, 2017, George underwent surgery and received his heart. These events were soon followed by a third triumphant success — on May 27, 2017, the inaugural Big Gifts for Little Lives raised $57,242. The next year, fellow Edmontonian Christine Post joined Kemp in organizing the second annual Big Gifts for Little Lives. Post’s son is also the recipient of a heart transplant, and the pair connected through a Facebook group for pediatric transplant parents at the Stollery, forming a friendship through their shared experience. In 2018, Post and Kemp

raised $16,795 at their event. The money raised goes toward grants for the Canadian Donation and Transplantation Research Program, as well as transplant research in general, and the Stollery Children’s Hospital Foundation helps Kemp and Post facilitate supporting this research across Canada. As Kemp and Post gear up for this year’s Big Gifts for Little Lives event (May 25), Kemp remains hopeful that it continues to raise awareness

about organ donation and corrects the idea that once a transplant takes place, all issues are solved. Her ultimate goal is to see community support for the event continue to grow in order to give as much money as possible to pediatric transplant research. “That’s the biggest thing, the research,” she says. “For me as a mom, when they said a heart only lasts 15 to 20 years and my son is already experiencing some rejection, that’s not good enough.” STOLLERYKIDS.COM

foundations

WE DO Tannis and Roman Tulis made helping kids at the Stollery a special part of their wedding day BY VICTORIA LESSARD

n a warm, sunny day in Edmonton last June, Tannis Peterkin walked down the aisle to her soonto-be husband, Roman Tulis. After the wedding ceremony, guests filed into Parkview Hall for the reception, where a fairy-tale setting awaited them. Elegant candelabras created a soft glow in the room, and lush greenery ran the length of each table, the dark green hues complementing the jewel tones of the silky tablecloths. At each table setting was a card with a special message inside. Instead of providing traditional wedding favours for their guests, the newly married couple donated $1,000 to the Stollery Children’s

HEROES MAGAZINE | SPRING 2019

Hospital Foundation through its wedding program. For Tannis, the youth philanthropy co-ordinator for the Foundation, taking part in the wedding program was an easy decision. Every day, she sees the impact of the Stollery Children’s Hospital on children’s lives. “Kids [at the Stollery] haven’t had the chance to experience life the way we have,” says Tannis. “You want them to grow up and have their own happily ever after.” The Foundation’s wedding program helps couples who would like to include the Stollery in their celebration find ways to do so. Couples can make a donation instead of giving wedding favours, ask

for donations instead of gifts, or collect donations instead of clinking glasses. The Foundation can also provide the couple with materials such as donation tracking forms, inserts for wedding invitations or table cards. Throughout their reception, the Tulises kept the giving spirit alive by encouraging their guests to donate money and ring a bell to have them kiss, rather than clinking glasses. “It started off smaller, [with] $5 and then $10. Then someone got excited and said, ‘What kind of kiss are you going to do for $20?,’ ” recalls Tannis. “We had a lot of fun and had the whole crowd engaged as well. That raised $280.” In 2018, the Foundation had 18 couples participate in the wedding program, raising a total of $25,000. All of the money raised goes toward whatever is needed most at the Stollery, from equipment and programming to research and training. For Tannis, including the Foundation on a day so close to her heart was especially meaningful. “It meant we could do something to not only celebrate us, but to help others in our community,” she says.

PHOTO BY PICKLED BEETS PHOTOGRAPHY

TANNIS AND ROMAN TULIS ON THEIR SPECIAL DAY.

events

RACING FOR A CURE PHOTO BY BLAKE J PHOTOGRAPHY; WHEELS FOR WELLNESS PHOTO BY JONATHAN SCHAWBE

SAVE THE DATE

JUNE 22, 2019

AUGUST 25, 2019

SEPTEMBER 7, 2019

SEPTEMBER 14, 2019

RACING FOR A CURE

SIMPLY SUPPER LEMONADE STAND DAY

ROW FOR KIDS

WHEELS FOR WELLNESS

Join us for a free, fun-filled day at the Legislature grounds as part of Racing for a Cure. Cheer on Stollery kids as they arrive in style in rare and cool cars, and enjoy activities for all ages with your family — from climbing walls, sumo suits and hamster balls, to live entertainment and rides.

Simply Supper Helps and its youngest volunteers will squeeze some love into the community by hosting its 6th Annual Lemonade Stand Day, where kids can help kids by selling lemonade in their own neighbourhoods.

FUNDRAISING GOAL: $250,000 FUN FACT: Get up close and personal with $50 million worth of exotic cars on display by making a donation. All proceeds support the Stollery!

Learn more at racingforacure.ca

FUNDS RAISED: $217,000 in 2018 FUN FACT: In 2018, more than 20,162 cups of lemonade were sold at 442 stands across the city, raising vital funds in support of the Stollery.

Learn more at simplysupper.ca/helps/ lemonade-stand-day

Get your team together to train for a regatta at Telford Lake in Leduc. Row for Kids is open to those with rowing experience and those without; the Edmonton Rowing Club’s volunteer coaches work with teams to develop or build the skills they need. FUNDS RAISED: $125,700 in 2018 FUN FACT: Row for Kids is a joint fundraiser; 75 per cent of funds raised go to the Stollery, and 25 per cent are donated to the Edmonton Rowing Club (in support of its youth and amateur sport programs). Last year, 13 teams took part.

Buckle up for the 4th Annual Wheels for Wellness car rally in support of child and youth mental health. Fun for families, friends and co-workers, this event features a variety of epic checkpoints that change each year. FUNDS RAISED: $217,000 in 2018 FUN FACT: Money raised at this event is split 50/50 between the Stollery Children’s Hospital Foundation and the Mental Health Foundation.

Learn more at wheelsforwellness.ca

For more information or to volunteer or make a donation to the event, visit rowforkids.ca

Visit stollerykids.com/events for a complete list of our upcoming events. STOLLERYKIDS.COM

Little

FIGHTER Born 14 weeks early, Cameron Miller has grown from a tiny preemie into a happy boy who loves sports BY LISA KADANE • PHOTOGRAPHY BY COOPER & O’HARA

hen Cameron Miller was barely three months old, doctors in the Stollery neonatal intensive care unit (NICU) at the Royal Alexandra Hospital pulled his mom aside and told her to prepare for the worst. “They took me into a little room and told me he was probably not going to make it through the day. And there was not anything more they could do for him,” says Michelle Miller, recounting the moment through tears. Cameron had been born on March 8, 2014, at just 26 weeks and four days gestation, and weighed in at only two pounds, five ounces. Not surprisingly, his first few months of life as a preemie had been rocky. Premature babies are at risk of developing breathing problems due to underdeveloped lungs. They can also develop necrotizing enterocolitis, a condition where part of the bowel starts to die from a lack of oxygen or blood flow. Cameron experienced both issues — and then some. In his first few weeks of life, Cameron was transferred from the Stollery NICU at the Royal Alex to the Stollery David Schiff

HEROES MAGAZINE | SPRING 2019

surgical NICU at the U of A Hospital site, where he underwent a PDA ligation to clamp an artery in his heart that hadn’t closed. He had difficulty breathing on his own and needed support, and then he experienced ongoing problems with his bowel, which would require surgery on three separate occasions. Through all of these complications, Michelle never doubted her son would pull through — until that June day when his doctors took her aside to talk. Cameron’s little lungs were struggling to oxygenate his blood. But the Stollery team at the Alex spoke with the team at the main Stollery Hospital and they came up with a plan. At 4 p.m. that day, three ambulances and a car transporting a large team of doctors, nurses, specialists, and specialized surgical equipment drove to the Stollery NICU at the Royal Alex to try to save Cameron, who was too sick to move to the other Stollery NICU. The team operated on him to put him on extracorporeal membrane oxygenation (ECMO), where an external machine basically takes over heart and lung function, removing blood from the body,

oxygenating it, and then pumping it back in. Doctors don’t usually do ECMO for babies that weigh less than three kilograms because their blood vessels are too small for the tubes. At the time, Cameron weighed 2.6 kg, but they decided to try the surgery anyway. For the next two weeks, ECMO delivered oxygen-rich blood into Cameron’s little body while specialists checked the lines to look for clots that could travel to his brain and cause a stroke. Feeling helpless, his mom and grandparents hoped for the best. Though he only had a 50 per cent chance of surviving ECMO, Cameron won the coin toss — the risky procedure saved his life. “My Dad used to call Cameron my million-dollar baby,” says Michelle. “[With the Stollery team] there was never a question of, ‘Is this one child’s life worth it?’ There was never a question of cost — it was, ‘How do we keep this child alive?’ ”

MULTIPLE NEEDS

Indeed, keeping Cameron alive was the Stollery’s goal from day one. “He had a lot of complications that you can see with premature babies, and

hero CAMERON ON HIS BICYCLE, WHICH WAS LOVINGLY RETROFITTED BY HIS FAMILY LAST SUMMER.

STOLLERYKIDS.COM

HEROES MAGAZINE | SPRING 2019

SUPPORT AND TENACITY

THE EXPERTISE THAT’S PROVIDED FOR THESE BABIES FROM THE MULTIPLE SPECIALISTS... [IS REMARKABLE]. DR. REHANA CHATUR

emotional support, and also credits her eldest son, Brady, who was three at the time, with motivating her to carry on. “That might have been my saving grace,” says Michelle. “I couldn’t just lose it because I had to be there for Brady. I couldn’t shut down completely. It was like a job.” She would take Brady to daycare, then spend the day at the hospital with Cameron, then pick Brady up, take him home and put him to bed. If she had childcare for Brady she would return to the Hospital in the evening and stay with Cameron until midnight. “I would do that every single day,” she recalls. “I can remember getting in my car and I would basically cry all the way to picking Brady up. Then I would just get it together.”

Michelle also appreciated the kind Hospital staff, especially the nurses, whom she got to know during her many hours spent at Cameron’s bedside. “They were always very supportive. There was always a social worker there if I needed to talk,” says Michelle. “I could call at any moment of the day and someone would be there to answer the call and tell me how he was doing.” The support helped Michelle stay strong for Cameron, though she and her parents were awed by the little tyke’s fighting spirit. “He had such a strong heart and will to survive,” says Jackie. She recounts how Cameron tried to pull out his breathing tube after his last big surgery, which took place when he was six and a half months old. That surgery was done to reconnect his bowel, repair a hernia, wrap the upper portion of Cameron’s stomach around the esophagus to prevent reflux (a procedure called a fundoplication) and install a G-tube for feeding. When doctors finally extubated him (after he’d been struggling to extubate himself), Cameron’s stats shot up. “That kid, as tiny as he was, knew exactly what he wanted, and when,” says Jackie. Even Stollery doctors were impressed with Cameron’s tenacity. “The fact that, first of all, [doctors] considered him to be a candidate for ECMO and then the fact that he was able to wean off ECMO and survive — that in itself is amazing and just speaks to his resiliency and his determination to survive,” says Dr. Chatur.

MOVING FORWARD

That determination has served Cameron well since he was released from the Hospital on World Prematurity Day, Nov. 17, 2014, at the age of eight months. All told, he spent 254 days in hospital, splitting his time between the two Stollery NICUs and the Stollery inpatient ward. Since Cameron has left the Hospital, a complex therapy team from the Glenrose Rehabilitation Hospital has followed his progress. The Glenrose team of therapists

DR. REHANA CHATUR PHOTO SUPPLIED

he had multiple of them. And even the complications that he had were more extreme than we tend to see,” says Dr. Rehana Chatur, who has been Cameron’s pediatrician since shortly after he came off ECMO. Fortunately, Cameron stabilized and was breathing independently after his time on ECMO, but he wasn’t out of the woods. That July, he had to be re-intubated because his intestines were pushing into his lungs, making it a struggle to breathe. In addition, his bowel had developed a stricture — a narrowing impeding the flow of nutrients and waste through the small intestine — and part of it had to be removed, so he ended up on an ostomy bag for a couple of months. In that time, he also developed an abnormal breathing sound called a “stridor,” which indicates a restricted airflow from being intubated for so long. He received experimental Botox on his trachea to treat it. For a preemie with so many complex needs, there was no better place to be than the Stollery. “I’ve been in a lot of places all over the world, and Edmonton is very small when compared to a city like Toronto, so to have the doctors and the Hospital there for the sick kids is just amazing,” says Jackie Miller, who stood by her grandson and daughter through the medical ordeal. “The Stollery has an amazing tertiary neonatal ICU. The outcomes that we’re seeing now for premature babies that are even 24 or 25 weeks of age are amazing compared to what it would have been 20 years ago,” says Dr. Chatur. “The expertise that’s provided for these babies from the multiple specialists, including neonatologists and all of the allied health professionals like dieticians and pharmacists and therapists [is remarkable]. Every aspect of the child’s development can be addressed by a large multidisciplinary team.” Michelle, a single mom, put her trust and faith into that team of doctors, nurses and specialists; she trusted that they knew what they were doing and would make the right decisions for Cameron’s care. She relied on her mom and dad for

hero MICHELLE MILLER WITH HER TWO SONS, BRADY AND CAMERON, AND HER MOM, JACKIE MILLER.

ECMO CARE

BY THE NUMBERS

Total number of Stollery ECMO patients in 2018

ECMO patients in the pediatric intensive care unit

ECMO patients in the pediatric cardiac intensive care unit

$100K

The Foundation provided $100,000 in 2018 for a respiratory transport ventilator in the Stollery NICU at the Royal Alex

works with Stollery doctors to track premature babies and complex therapy children (kids with heart problems or who, like Cameron, were on ECMO) up to age five to help them reach their full developmental potential. Cameron has also had home visits from occupational therapists and physical therapists who monitor his development and teach him skills such as how to eat independently. At age two, Cameron was diagnosed with cerebral palsy by Dr. Charlene Robertson from the Glenrose. The condition affects muscle tone, movement co-ordination and motor skills

and, in premature infants like Cameron, is caused by brain bleeding or lack of oxygen to the brain. Now five years old, he uses a wheelchair to get around and attends the Elves school program, an educational day program for children with disabilities. He also has regular follow-up appointments at the Stollery and is currently being treated for iron deficiency anemia â&#x20AC;&#x201D; his shortened bowel struggles to absorb the crucial mineral. These facts donâ&#x20AC;&#x2122;t seem to bother Cameron, who loves watching sports, listening to music, joking around, and hugging his mom and big brother.

STOLLERYKIDS.COM

hero THE MILLERS ARE GRATEFUL FOR THE SPECIALIZED STOLLERY CARE CAMERON HAS RECEIVED OVER THE YEARS.

[WITH THE STOLLERY TEAM] THERE WAS NEVER A QUESTION OF, ‘IS THIS ONE CHILD’S LIFE WORTH IT?’ THERE WAS NEVER A QUESTION OF COST — IT WAS, ‘HOW DO WE KEEP THIS CHILD ALIVE?’ MICHELLE MILLER

“He’s doing great and he never stops talking. He’s always smiling. He’s the smiling-est kid,” says Jackie. His mom hopes Cameron will eventually be able to sit independently (he currently requires support). In early 2019, Cameron underwent Botox treatment to loosen his hip flexors and give him more range of motion. Since she doesn’t know what his future holds, mobility-wise, Michelle prefers to focus on all the cognitive milestones Cameron has met since returning home to his own backyard. “The kid can talk a mile a minute, he can do his alphabet, he can count to 20. He’s still behind where he needs to be but he’s getting closer all the time,” says Michelle. “I just want him to be as independent as he can.” She also wants him to live as normal a life as possible, so she tries not to let his cerebral palsy limit their family. She brings Cameron to all of Brady’s hockey games, and plans to enroll Cameron in swimming and other activities through the Cerebral Palsy Association. Michelle is also thrilled to see Brady and his little brother develop a closer relationship as Cameron has grown. In fact, for the past five years, Brady, now

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eight, has asked for donations to the Stollery Children’s Hospital Foundation in lieu of presents for his birthday, and so far he’s raised more than $2,500. Michelle is proud her oldest son is raising money for the Stollery. “To see him giving back just makes me really happy,” she says. And it’s especially powerful to Michelle that the money raised is going to help the Hospital she credits with saving Cameron’s life.

“There isn’t another Hospital that would have tried what they did. Cameron would not have made it through the day — he would have died that day if they hadn’t tried ECMO.” Dr. Chatur agrees. “Without ECMO he would have died. The fact that he’s here and the fact that he can eat on his own, can go to school, can talk, can articulate his needs and tell his mom how much he loves her. Those are pretty big things.”

stollerific program

Giving THANKS The Harden family showed their appreciation for the care they received with the largest donation to date to the Stollerific program BY MICHELLE LINDSTROM

SADIE HARDEN WITH HER TWIN BROTHERS, HUNTER AND TYKE.

PHOTO COURTESY SADIE HARDEN

adie Harden, now two years old, is feisty and full of life, says her mother, Jamie Harden. She’s not someone you’d expect would have dealt with kidney failure. But in September 2018, that’s exactly what the young Stettler County, Alberta, resident faced. After days of dealing with flu-like symptoms and having her mom take her back and forth between the ER and her family doctor at the Stettler Hospital and Care Centre, Sadie suffered a seizure from dehydration. STARS airlifted the little girl to the Stollery Children’s Hospital in Edmonton.

“I was so scared,” Jamie says. “But the transport nurse took charge and made me feel so safe.” They arrived at the Hospital around 9:30 p.m., and Stollery medical staff confirmed by about 1 a.m. that Sadie was in kidney failure due to E. coli and had hemolytic uremic syndrome (HUS). Sadie spent five days in quarantine while undergoing blood dialysis in the pediatric ICU (PICU), and 17 days in total at the Hospital as she recovered from her ordeal. During Sadie’s hospitalization, Jamie split her time between staying in Sadie’s room and the parents’ room down the hall, enabling her to avoid hotel costs. And Sadie’s

father, Josh Harden, and her two older twin brothers visited as often as possible. Still, those 17 days at the Stollery generated many costs for the family due to missed work time, medications and more. So, Josh’s sister created a Facebook auction for the family, knowing that people in their community would want to help. Josh is a saddle bronc rider, steer wrestler, and 2015 All Around Champion; the family is very much part of the close-knit rodeo community, which fully backed the auction, raising close to $75,000. The large sum enabled the Hardens to pay it forward to the Stettler Hospital and

Care Centre and the Stollery Children’s Hospital. Sadie recovered fully from her condition, and they wanted to express their gratitude. “We donated to the Stollery because the PICU division was unbelievable,” Jamie says. They delivered a $10,000 cheque to Sue McCoy, Stollery director of major gifts, when Sadie had a follow-up appointment this past January. McCoy let Jamie know about the Foundation’s Stollerific program, which enables families to give thanks by making a donation as part of their healing process. “This program gives families that opportunity to give back and make a donation in honour of a caregiver or a team at the Hospital,” McCoy says. The Hardens honoured the Stollery transport team and the PICU team through the Stollerific program. Families can write personal messages to Hospital staff they want to thank on Stollerific greeting cards that also state a donation was made in the caregiver or team’s honour. The Foundation then ensures the cards are hand-delivered to recipients. The Hardens’ $10,000 is the largest Stollerific donation so far and will go toward the Hospital’s priority needs. “The Stollery has more than 293,000 patient visits every year,” McCoy says. “Any time we have a donation, all of it goes toward specialized care at the Hospital, allowing us to help the Hospital recruit the best people around the world and stay at the top when it comes to leading-edge technology, equipment, training and research.”

STOLLERYKIDS.COM

Partners IN HEALTH

100%

OF FUNDS RAISED LOCALLY THROUGH CMN PARTNERS STAY LOCAL IN SUPPORT OF THE STOLLERY.

Working together sets the Children’s Miracle Network apart BY GEOFF GEDDES

f it takes a village to raise a healthy child, imagine the need when a child’s health is under siege. In those times, a whole network of villages is often required, and that’s what the Children’s Miracle Network (CMN) is all about. Since 1983, CMN has provided much-needed support for more than 10 million children in 170 children’s hospitals in Canada and the United States. Like many other hospital foundations in North America, the Stollery Children’s Hospital Foundation relies on many of the CMN’s generous partners to supports its mission. “We work with about 25 CMN partners,” says Jamie O’Connell, senior development officer and program director with the Foundation. “Together, we raise around $4 million a year, much of it at point of sale.” A closer look at six of these partners reveals how they support the Stollery Children’s Hospital and how you can help them do even more.

Panda Express

PARTNER SINCE 2017 TOTAL RAISED $134,000

HOW YOU CAN GET INVOLVED

The Stollery Children’s Hospital Foundation is pleased to welcome this fairly new partner in the Canadian market. Customers can donate at any Panda Express location throughout the year, with all money supporting the Foundation and its mission. 2

Air Canada

PARTNER SINCE 1998 TOTAL RAISED $317,000 HOW YOU CAN GET INVOLVED

You can donate on your next Air Canada flight through the Every Bit Counts Program. Money collected on flights goes directly to the Stollery. For one week in December, customers can also donate their Aeroplan Miles to the Foundation. These funds support the family transport program, which benefits both Stollery children and their families.

HEROES MAGAZINE | SPRING 2019

big give 4

RE/MAX

PARTNER SINCE 2001 TOTAL RAISED $5.8 million HOW YOU CAN GET INVOLVED

Hire a RE/MAX agent who supports the Stollery as part of the RE/MAX Miracle Home Program. Participating agents commit to donating a portion of their commissions to the Foundation every year, so you can find your new home while helping the Stollery bring care and hope to kids and their families. 5

Costco Wholesale Canada PARTNER SINCE 2001 TOTAL RAISED $6.5 million

HOW YOU CAN GET INVOLVED 3

Dairy Queen

PARTNER SINCE 2001 TOTAL RAISED $6.8 million HOW YOU CAN GET INVOLVED

Buy a DQ Blizzard at any participating Dairy Queen on Miracle Treat Day, which falls on August 8 this year. All proceeds from the day go to the Stollery Children’s Hospital Foundation. Every Dairy Queen in northern Alberta takes part, so it’s likely you can find one near you and contribute to what has been DQ’s most successful fundraising market in Canada for the past several years. As Dairy Queens are franchised, each one has the ability to fundraise during the rest of the year as well. If you’re buying a treat at your local DQ and they ask you to round up your purchase for the Stollery Children’s Hospital Foundation, it’s another way to help sick kids right in your own backyard.

Costco runs a national campaign each year in which customers can donate at the checkout counter. This year the campaign runs from April 29 – June 2, and all money raised north of Red Deer, plus half the funds raised in Red Deer, will fund priority needs and long-term goals at the Stollery. 6

The Brick

PARTNER SINCE 2014 TOTAL RAISED $881,000 HOW YOU CAN GET INVOLVED

The Brick is a year-long partner, so customers can make donations at any Brick or Brick Mattress location in northern Alberta by buying furniture or a Brickley Bear, the Brick’s branded teddy bear. If you’re not in the store, you can buy a Brickely Bear or Brickley socks on the Brick’s website, with all proceeds going to the Stollery Children’s Hospital Foundation.

Most funds raised by CMN partners are undesignated, so they can go where they are most needed to support specialized equipment, training, programs and research. The next time you see a little yellow balloon with “Stollery Children’s Hospital Foundation” written inside it, whether it’s at a retail location, in a restaurant or airport, or on a For Sale sign, it’s your chance to help thousands of Stollery kids and their families, one dollar at a time.

STOLLERYKIDS.COM

FIVE-YEAR-OLD RYLAND NOBLE HAS SHARED HIS STORY AT A VARIETY OF STOLLERY EVENTS.

RYLAND’S Story Introducing the Stollery’s 2019 CMN Champion Child

Y 18

ou are the strongest, bravest four year old I have ever met … in four years you have experienced more than most people will in their entire life...

HEROES MAGAZINE | SPRING 2019

These words, part of a letter written by Katrina Noble to her son, Ryland, say a lot about both of them, and they speak volumes on why Ryland Noble is the Stollery’s 2019 Champion Child.

Each year, the Hospital chooses an extraordinary child to serve as an ambassador in the CMN Champion Child program. In addition to telling his story at local events, as a Champion Child, Ryland has represented the Stollery Children’s Hospital and Foundation at its annual Corus Radiothon and at its Snowflake Gala. In March, he also lived out any child’s dream with a visit to Walt Disney World in Florida, where he met his fellow Champions from across North America at Children’s Hospital Week, presented by Walmart. “The Stollery has participated in the Champion Child program for 13 years,” says Jamie O’Connell, the Foundation’s senior development officer and program director for Children’s Miracle Network in Edmonton. “It’s heartwarming to see how far the kids have come. The program is a chance to celebrate these children and give our funding partners a glimpse of the difference they’re making in so many lives.” The Hospital has certainly made a difference for Ryland. At just five weeks of age, he was diagnosed with aqueductal stenosis — a narrowing of the aqueduct that connects two of the cavities within the brain, which can lead to hydrocephalus (or fluid in the brain). He had a shunt placed in his head at eight weeks to keep him alive, and by age one had endured several brain operations at the Stollery. Since then, he’s had some of his skull around the temple permanently removed to relieve pressure on his brain and has faced multiple shunt challenges. As a result of all of this, Ryland has endured countless months of rehabilitation that will continue for the rest of his life, as

big give

THE STOLLERY HAS BECOME OUR SECOND FAMILY. OUR CHILD WOULDN’T BE ALIVE IF NOT FOR THE HOSPITAL, SO THIS IS A CHANCE TO GIVE BACK. KATRINA NOBLE

well as MRIs, CT scans, EEGs, X-rays and regular visits to the Stollery in pursuit of a healthier future. Indeed, the strength and bravery his mom describes in her letter to Ryland is something that Ryland, now five, continues to summon every day. He’s currently dealing with a new challenge: 35-minute seizures that appear to be caused by scar tissue damage from the many shunt revision procedures. In spite of it all, his mom describes him as a happy, sensitive, charismatic and compassionate boy with a love for learning — and for the limelight. “Ryland was super excited to be chosen as a Champion,” says Katrina. “He loves people and being on camera.” For Katrina and her husband, Bryan, being included in the program is a huge honour, as well as an opportunity. “The Stollery has become our second family. Our child wouldn’t be alive if not for the Hospital, so this is a chance to give back.” As for what the future holds, the Nobles are cautious but hopeful. “Today he’s good, and that’s our focus.”

Walmart: Proud, Passionate Partner WHAT MAKES AN IDEAL CMN partner? The funds they raise are an obvious factor, but how those funds are raised is also important. Since 1994, Walmart Canada’s northern Alberta stores have raised more than $8.5 million for the Stollery Children’s Hospital Foundation, including more than a million dollars in the past year. “Walmart has been an exceptional partner with the Foundation,” says Jamie O’Connell. “The enthusiasm of everyone from executives to front-line associates is remarkable. As a Foundation, we are extremely grateful for their passion in giving back to the community.” While Walmart employees show that passion when they ask for donations at the register, their involvement goes much further. “When we held the Champion Child launch [in February] at Walmart Supercentre Tamarack in Edmonton, there were about 150 people in attendance, many of them staff from that store and regional executives from across northern Alberta,” says Angela Bennett, development officer for

CMN with the Foundation. “We even had several associates from other stores show up on their day off just to give support.” Many of those associates gave their time in building a Batmobile out of a shopping cart when they heard the 2019 Champion Child for the Stollery — Ryland — is a big Batman fan. Throughout the year, Walmart associates also perform grassroots fundraising activities like bake sales in the staff room and gift wrapping at Christmas, with all revenue supporting the Stollery. “Together with the generosity of our associates and customers, Walmart Canada is proud to be a long-standing supporter of the Children’s Miracle Network,” says Lee Tappenden, president and CEO, Walmart Canada. “The courage and resilience of the children I’ve met through the Champions program is truly inspiring. [That courage] is the reason we continue to support the amazing work done by the Children’s Miracle Network and in its member hospitals in improving the health of children across North America.”

STOLLERYKIDS.COM

CLINICAL TRIALS ARE MAKING IT QUITE CLEAR THAT IF A CHILD ENTERS INTERVENTIONS AT A VERY YOUNG AGE, THEY DO BENEFIT. DR. LONNIE ZWAIGENBAUM

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innovator

Funding INNOVATION Meet two Distinguished Researchers whose vital projects are made possible through Foundation support BY ELIZABETH CHORNEY-BOOTH • PHOTOGRAPHY BY COOPER & O’HARA

ith a keen eye on helping children live happy and healthy lives in the present as well as the future, the Stollery Children’s Hospital Foundation has always made funding innovative research a priority. The Foundation is proud to support the Stollery Science Lab and its Distinguished Researchers program, through a $5-million investment over five years. Launched in 2018, this program is a joint initiative between the Foundation and the Women and Children’s Health Research Institute at the University of Alberta, and its purpose is to give a boost to researchers addressing health issues affecting children and youth. Here’s a look at two of the seven Distinguished Researchers who are making waves in their respective fields.

DISTINGUISHED RESEARCHER

Dr. Lonnie Zwaigenbaum No one knows a baby as well as its parents do. After spending countless hours feeding, bathing, holding and interacting with an infant, parents are able to pick up nuances in their baby’s development in ways that doctors often cannot. When it comes to detecting early signs of autism in very young children, parents are usually the first to notice atypical social engagement. It’s with this in mind that Dr. Lonnie Zwaigenbaum is conducting research that aims to not only identify children with signs of autism at the earliest age possible, but also to provide means of intervention so that those children can thrive as they

grow older. A developmental pediatrician at the Glenrose Rehabilitation Hospital and the Stollery Children’s Hospital Foundation’s Chair in Autism, Zwaigenbaum is currently working on an early detection project funded by the Stollery Science Lab program. On average, children are typically not diagnosed with autism until they are about four years old, and even when parents show concern earlier, it’s rare for kids to receive a diagnosis before they’re two. Starting in 2000, Zwaigenbaum was part of the Canadian Infant Sibling Study, a project involving researchers across the country that developed an infant autism screening tool consisting of a questionnaire for parents of newborns who already had an older child diagnosed

with autism. Since siblings of autistic children are more likely to have autism than kids in the general population, and the parents could draw on differences they noticed with the older children, this study helped Zwaigenbaum to identify children as young as six months as being at risk for autism. Now, Zwaigenbaum is extending his research. He’s working with doctors in Toronto to apply the same tool to babies who don’t necessarily have a family history of autism to identify early signs of neurological differences in children as young as six months old. The new project, funded by the Stollery Science Lab and titled “Enhancing outcomes for infants at risk of autism through screening and intervention,” will consist

STOLLERYKIDS.COM

of a questionnaire that will ask parents simple questions about how their babies communicate, interact socially and play. For example, there are questions about how babies respond to smiles and to being called by their names. The questionnaire will be distributed to parents at healthy baby check-ups over the course of two years. “The outstanding question from our perspective is whether this questionnaire can be informative in the general community,” Zwaigenbaum says. “The parents will be going on their own deep familiarity with their infants, with the questionnaire prompting them on things to think about.” Diagnosing infants with autism is especially valuable if that early detection can result in some kind of treatment that will improve patients’ outcomes, which is something that Zwaigenbaum is also working on. He helped develop a companion study to the first screening tool project — a parent-mediated treatment approach called the Social ABCs, designed to help toddlers who show early signs of autism to better communicate and engage socially. These interventions include simple engagement exercises like holding up a favourite toy and prompting kids to indicate their interest, either through eye contact or verbalization, with the parents reinforcing that communication with smiles and joyful interaction. Zwaigenbaum is hopeful that this work will give parents a better picture of their kids’ developmental needs. In addition, if parents who are aware that their baby is at risk use these interventions to engage with the child effectively, he’s hopeful there’s a chance that their child may not develop some of the challenges typically attributed to autism. “Clinical trials are making it quite clear that if a child enters interventions at a very young age, they do benefit,” Zwaigenbaum says. “It’s about trying to enrich kids’ early social interactions and focusing on helping the child communicate in order to put them on the right track for subsequent development.”

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Intervention In Action WHEN LEANNE BILODEAU’S oldest son, Benjamin, was diagnosed with autism at the age of four, she was already concerned about her two younger sons. Remy, her three-year-old, was showing developmental delays and would eventually also be diagnosed with autism. The day of Benjamin’s diagnosis in 2010, a psychologist at the Glenrose Rehabilitation Hospital suggested that Bilodeau look into enrolling her three-month-old, Jacques, into Dr. Zwaigenbaum’s infant screening study. This move may have changed the trajectory of the infant’s life. Jacques was showing some signs that concerned Bilodeau — especially lack of eye contact during breast feeding — so she involved him in the same kinds of therapeutic social play prescribed to Benjamin by his physician to encourage emotional engagement. While Bilodeau knows it’s impossible to verify if the intervention prevented the development of autism, she believes the attention paid to Jacques’ symptoms helped to put him on a different neurological path. Jacques has never been diagnosed with autism and is now thriving as a nine-year-old. “I think participating in the study made a huge impact on Jacques,” Bilodeau says. “It made a huge impact on his development, but also it gave me real peace of mind.”

WHEN WE LOOK AT PHYSICAL HEALTH, IT CAN’T BE SEPARATED FROM MENTAL, EMOTIONAL AND SPIRITUAL HEALTH. KATE STOREY

innovator

DISTINGUISHED RESEARCHER

Kate Storey

Kate Storey, an assistant professor at the University of Alberta’s School of Public Health, focuses her work on supporting children and youth to be healthy and well — but she knows that facilitating a healthy lifestyle is about a lot more than telling kids to eat fruits and vegetables. With a background in nutrition and health promotion, Storey recognizes that a number of influences, ranging from political and economic factors to emotional and intergenerational trauma, can affect a community’s health and well-being. Storey’s Stollery Science Lab project is the implementation and examination of an initiative called the Indigenous Youth Mentorship Program (IYMP) in Alberta. First developed by partners at the University of Manitoba nearly a decade ago, IYMP is an after-school program that sees Indigenous students in Grades 7 through 12 mentoring elementary school kids within their community through activities that model healthy habits. Storey and her team introduced IYMP to two Indigenous communities in Alberta in 2016 and the program is currently being expanded to four additional communities. While the ultimate goal is to reduce the risks that lead to type 2 diabetes, which affects Indigenous communities globally at a higher rate than seen in the general population, IYMP is not about simply educating kids on the benefits of healthy eating or physical activity. The program is centred on Indigenous teachings and models of resilience, taking a holistic approach and using a broad definition of “well-being” while celebrating the voices and strength of youth.

STOLLERYKIDS.COM

innovator “When working with Indigenous communities, we need to make sure that we use a decolonizing approach and recognize the power of culture,” Storey says. “When we look at physical health, it can’t be separated from mental, emotional and spiritual health.” Each IYMP session focuses on three components. The kids are offered a healthy snack, which can, but does not have to, consist of a culturally traditional food; mentors engage the younger kids in a game or physical activity, also often with a traditional element; and mentors include a relationship-building component. The content differs week to week and from community to community — Storey is very clear that the programming is to be driven by the communities, not by her own agenda. Before starting the afterschool program (which runs through the school year), youth mentors are coached by local “young adult health leaders,” as Storey calls them, who draw on the knowledge of elders and others in the community to help plan the program.

Mentoring Youth THE PRIMARY GOAL of Storey’s work is to improve the holistic health and well-being of children and youth, which means the teenage youth mentors are also benefitting from IYMP. Rain Arcand is a Grade 11 student who started mentoring this year. She joined the program as a means of boosting her own confidence. A few months of being a mentor and she says that she wishes the program had existed when she was in elementary school.

Distinguished Researchers Zwaigenbaum and Storey are each receiving $750,000 over five years from the Stollery Children’s Hospital Foundation, through the Women and Children’s Health Research Institute, to take their research to the next level. To find out more about the important work being done by the other five Distinguished Researchers, visit stollerykids.com/ stollerysciencelab.

“I joined because I wanted to set a positive impact on the youth in my community,” Arcand says. “To support them and encourage them, to help them learn new skills, have confidence and just have fun.” Tatumn Rain, a Grade 10 student who also participates as a mentor, says it’s the personal relationships that she’s developed that have made her mentoring so valuable. Rain knows she’ll come back again next year as a mentor to continue to pass that passion for building friendships and imparting knowledge onto the younger kids. “You’re not only a mentor, but

HEROES MAGAZINE | SPRING 2019

“It looks very different in every community,” Storey says. “There’s no one size fits all.” From a research perspective, the original Manitoba pilot program monitored the risk factors of type 2 diabetes among participants and did find that there was a significant improvement — compared to a control group who did not participate, the kids in the Manitoba study saw a decrease in average BMI and improvements in healthy dietary choices. While this is certainly a positive outcome, Storey is now more interested in how the program can ripple through to a number of different Indigenous communities in Canada in a way that supports a path toward reconciliation and decolonization. “We’re looking to understand how the structure of the program can be delivered by the community for the community, rather than as a research project,” Storey says. “We’re interested in what that transition of knowledge, resources and training looks like. Over the next five years we’ll be moving away from the outcomes and looking at those kinds of questions.”

RAIN ARCAND, IYMP MENTOR.

you’re also a friend and can be there for whatever they need. You can bring up their confidence and encourage them to

do things,” she says. “Also, the kids bring us a lot of joy. They make us laugh. They’re really amazing.”

advancing care

DR. DANIELA MIGLIARESE ISAAC AND DR. MATTHEW CARROLL AT THE STOLLERY’S IBD CLINIC.

CLINIC Collaboration The Stollery’s IBD Clinic is making life easier for youth with Crohn’s disease and colitis BY MICHELLE LINDSTROM • PHOTOGRAPHY BY COOPER & O’HARA

n 2012, pediatric gastroenterologist Dr. Matthew Carroll was working at the BC Children’s Hospital, completing a post-graduate clinical/research fellowship in Inflammatory Bowel Disease (IBD). STOLLERYKIDS.COM

“My research focus was IBD epidemiology [the study of statistics regarding how the disease spreads to certain populations] and the use of big data, or provincial health database sets,” Carroll explains. This big-picture focus was of interest to the Stollery Children’s Hospital, where Carroll was recruited that same year to help build and expand the Hospital’s IBD Clinic alongside two other gastroenterologists who specialize in IBD, Dr. Eytan Wine and Dr. Hien Huynh. Together, Carroll says, the three teamed up to collaborate on “approaches to build the IBD Clinic into a centre of excellence.”

WHAT IS IBD?

IBD encompasses both ulcerative colitis and Crohn’s disease — chronic conditions that cause the digestive tract to become irritated, swollen and ulcerated, leading to disruption in food digestion, nutrition absorption and waste elimination. Although the cause is not fully understood, one theory is that the immune system reacts inappropriately in people with IBD, mistaking bacteria normally found in the intestines as an invader, so it attacks. As this occurs, the body sends white blood cells into the intestinal lining, producing chronic inflammation and optimal conditions for ulcerations and bowel injury. Patients with IBD can experience symptoms such as abdominal pain, rectal bleeding, fatigue, vomiting, diarrhea, flatulence, bloating, weight loss and anemia. A lifelong disease, IBD is managed with medication,

Compared to adults, children present and sometimes surgery, but the actual with subtler IBD symptoms — unexcause and cure are yet to be found. plained fevers, iron deficiency, poor Carroll, who divides his time between growth, or non-specific abdominal clinical practice, research, education, pain — early in their disease, which can and duties associated with a number of often cause delayed diagnosis. Howchair positions, explains that IBD can ever, thanks to advances in diagnostic occur at any age, but usually starts in approaches, greater availability adolescence or early adulthood. of pediatric IBD specialists, However, as he noted in a and a growing awarepaper published in The ness that children can American Journal of also get IBD, this is Gastroenterology in The Foundation has changing. 2017, “Canada has “When I started among the highest invested $275,000 in [at the Stollery], incidence of childthe IBD Clinic over the we were seeing hood-onset IBD in past four years. about 30 to 40 new the world.” patients per year,” Indeed, the Carroll says. Today, prevalence of IBD in the IBD Clinic follows children in Canada has a steady flow of around risen more than 50 per 250 patients at any point in cent in the last 15 years. There time while diagnosing roughly 60 new is no definitive answer yet for why this patients per year. is the case, but there seems to be a link “Soon after diagnosis, there are freto geography: the further north we are, quent appointments because the family the higher the incidence, possibly due to is learning about the disease, what it reduced exposure to the sun (vitamin D), means, how to live and adjust,” Carroll which is an immune system regulator. says. “Our goal at the IBD Clinic is to see Current research also suggests IBD patients in remission within that first six is linked to early environmental expoto 12 months, and then we follow up to sures, such as antibiotic use that can make sure the protocol is actually doing alter a child’s developing gut microbiome its job.” (He adds that his team also (the microbe population living in one’s monitors progress, growth, and potenintestines), an overly sterile environtial side effects of both medication and ment creating an inadequate immune the disease.) system, or the Western diet — high in Among the protocols at the Clinic is a fat and refined sugars and low in dietary new treatment method that significantly fibre — paired with a sedentary lifestyle, speeds up a patient’s Infliximab infusion both of which negatively alter the gut’s — a standard IBD drug treatment — to microbiome.

THE STOLLERY’S IBD CLINIC HAS FOUR MAIN PILLARS 1

Sharing data, literature, and evidence on a reliable and consistent basis.

Continuing research development through collaborations with other hospitals.

Individualizing therapies so each patient gets exactly what they need at the right time.

Maintaining a supportive, multidisciplinary clinic with social workers, dieticians, summer students, nurses, and researchers to ensure the best possible care.

HEROES MAGAZINE | SPRING 2019

advancing care

UNTREATED OR UNMANAGED IBD IN CHILDREN CAN LEAD TO: Reduced height and weight from malnourishment due to difficulty eating or burning up too much energy from inflammation.

Missing school or other activities due to medical appointments or not feeling well.

OUR GOAL AT THE IBD CLINIC IS TO SEE PATIENTS IN REMISSION WITHIN THAT FIRST SIX TO 12 MONTHS, AND THEN WE FOLLOW UP TO MAKE SURE THE PROTOCOL IS ACTUALLY DOING ITS JOB. DR. MATTHEW CARROLL

Fatigue and difficulty concentrating due to active inflammation, anemia, or medication side effects.

Decreased likelihood of participating in fitness classes, afterschool sports, or other afterschool activities.

Frequent bathroom visits while at school, which can incur teasing and bullying.

Challenges with social interactions and feelings of isolation.

roughly one hour instead of four. Carroll and his team helped to develop the protocol, and now, several hospitals across the country are using their approach.

HELPING THE IBD CLINIC GROW

As a way to challenge the mounting statistics on childhood IBD and improve means of diagnosis, the IBD Clinic at the Stollery recently gained a new team member – Dr. Daniela Migliarese Isaac, an expert in pediatric bowel ultrasound whose research at the Stollery is made possible through funding from the Stollery Children’s Hospital Foundation. Traditional diagnostic tools for IBD include MRIs and CT scans, which can be challenging when dealing with pediatric patients; typically, young children need to be sedated for MRIs, while CT scans emit radiation. But the use of ultrasound provides a cheaper, radiation-free, noninvasive option and, according to Carroll, “The amount of information it gives us

can be massive in terms of managing [a patient’s] condition.” The team is currently assessing its use through Dr. Isaac’s research. In 2016, the Foundation also helped fund the addition of a dedicated endoscopy room for the IBD Clinic. This innovative space has equipment that moves around the room, instead of having to reposition young patients for their various tests. “The focus of the room is on the kid: the most important person in the room. We leave them in position with the anesthetist looking after them and we’re able to move the equipment around them. It’s a much safer and nicer way of doing things,” says Carroll, who adds that he and his team are “enormously grateful” for the Foundation’s support. “The clinic’s primary goal is to get the best possible care for the kids we look after, [and] if we know we should be doing something, let’s make sure that care reaches the kids on a reliable and consistent basis,” he says. STOLLERYKIDS.COM

Critical Care WARRIOR

Kristy Cunningham loves overseeing the Stollery Intensive Care Unit (ICU) projects that will improve the quality of care for sick babies and children BY LISA KADANE • PHOTO BY COOPER & O’HARA

rowing up in St. Albert, Alta., Kristy Cunningham always knew she’d follow in her mother’s footsteps. “I wanted to be a nurse,” Cunningham says. “I didn’t always know that I wanted to be a pediatric nurse, but upon graduating I was fortunate to have my final practicum in pediatric cardiology at the Stollery, and then they had a job as a graduate nurse there and that started my career.” Fast-forward 18 years and Cunningham is now the executive director for critical care and respiratory therapy at the Stollery Children’s Hospital. She oversees operations of the 69-bed Stollery neonatal intensive care unit (NICU) at the Royal Alexandra Hospital, the 18-bed David Schiff NICU at the University of Alberta Hospital, and both the pediatric ICU (PICU) and the pediatric cardiac ICU (PCICU) at the main Stollery site. When the new Stollery NICU at the Sturgeon Community Hospital in St. Albert opens in September, she’ll oversee that, too. “Any children that require critical care fall within my portfolio,” she explains. Her mandate includes integrating health across all Stollery ICUs to ensure that patients and families receive the highest level of care. This means she

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has a hand in site initiatives, budget, love my job,” she says. In her earlier role at the Stollery as a and staff performance and professional pediatric nurse, Cunningham relished development to make sure resources and expertise are spread evenly across her time working directly with children at their bedside. Her current job means the five units in her portfolio. In 2018, fewer hours spent with families, the Stollery ICUs treated more than but she says the trade-off is 2,847 patients. tremendously rewarding. Cunningham also “The work I am doing oversees the respiratory in my current role to therapy department for In 2018, the improve quality, access the Stollery Children’s Stollery ICUs and safety within the Hospital; respiratory treated more Stollery is making a therapists are trained difference,” she says. to do intubations, than 2,847 In fact, she is, literalairway management patients. ly, helping to create more and monitoring, and beds for babies and kids ensure that children through two projects that can breathe well. Finally, will positively impact families in Cunningham is responsible for the Edmonton area. oversight of the pediatric and neonatal This May, a new PICU opens at the transport teams that go out and retrieve Stollery Children’s Hospital (see page critically ill patients from hospitals as 38 to learn more). The project is part far away as the Northwest Territories. In 2018, there were 834 NICU and 353 of a larger five-year capital redevelopment plan for all Stollery ICUs (a PICU transports. new PCICU opened in December 2017, Though it can be stressful organizing care for sick babies and children — and and a new NICU is planned for 2020). The PICU space has transformed from unbelievably sad handling losses and a large, open-concept unit into 16 watching families struggle — Cunningham single-patient rooms equipped to care can’t imagine doing anything else. for children recovering from trauma, “I love working with the kids, I love surgery, transplants, burns — basically, the team that I have around me. I just

hospital portrait

THE WORK I AM DOING IN MY CURRENT ROLE TO IMPROVE QUALITY, ACCESS AND SAFETY WITHIN THE STOLLERY IS MAKING A DIFFERENCE. KRISTY CUNNINGHAM

anything requiring critical care that isn’t cardiac. Each room now has a caregiver space that includes a bed where parents can stay with their child. The private setup also nearly eliminates issues with

confidentiality and infection control, and will help patients and families with day/ night routine as families and caregivers will have control over lighting and noise within the room.

“These are drastic improvements for families and our staff,” says Cunningham. The other project is a Level 2 Stollery NICU that will be opening this coming fall, right in the labour and delivery ward at the Sturgeon Community Hospital in St. Albert. The new six-bed NICU will be equipped to care for infants over 32 weeks gestation. Currently, babies that require medication, or breathing or feeding support in the first few days of life, must be transferred to another NICU. Come September, they will be able to receive treatment on-site, which allows mom and baby to remain within the same hospital. “This project is near and dear to my heart because that’s my home community,” says Cunningham. Features of this NICU will include two private rooms and one pod for four newborns, along with reclining chairs so families can stay by their babies’ side. There will also be a family lounge with a kitchen and play space so older siblings can have fun when they come to visit. For both projects, Cunningham has been involved in the functional planning of the spaces, as well as the schematic design and all the small details. She says dreaming up the final plans was a collaborative process between managers like herself, staff, and Stollery families who sat in on design meetings. The Stollery Children’s Hospital Foundation is helping to fund each project, contributing $2.5 million to the Stollery NICU at the Sturgeon, and $5.5 million to the redevelopment of the Stollery PCICU, PICU and NICU. These funds have helped support facility costs and will pay for the incubators, ventilators and all of the support equipment needed to make the units operational. “When I started nursing, I didn’t have kids and now I do. Even that change in perspective — and recognizing that someday I, too, may need this Hospital — made me really appreciate all the work our staff does and what the Foundation does for the Hospital,” says Cunningham. “You really never know when you are going to need it.” STOLLERYKIDS.COM

NATALIE HOUSEMAN (BOTTOM RIGHT) AND MEMBERS OF THE STOLLERYâ&#x20AC;&#x2122;S HEMATOLOGY AND ONCOLOGY DEPARTMENTS.

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teamwork

Finding the WORDS By creating a shared program statement, the Stollery’s hematology and oncology departments didn’t just change the way they described their collaboration, they changed how they work BY ROBBIE JEFFREY • PHOTO BY COOPER & O’HARA

ometimes, when children ask their parents why the sky is blue, the parents stall. It’s not that they don’t know, exactly. It’s that they’ve rarely, if ever, had to explain it. Maybe a parent can explain 90 per cent of it, but somewhere along the line, surely, the science will be a little off. In search of accuracy, the parent may Google the question, memorize a few points and then explain it to their child. But later, that parent might think to himself or herself: Maybe I didn’t fully understand why the sky is blue. Natalie Houseman, the patient care manager for oncology and hematology at the Stollery Children’s Hospital, has no trouble explaining why the sky is blue, but she can relate to the feeling of not having all the right — or the most accurate — words. Still, she’s superb at describing all kinds of things, including the details of the role she started in September 2017 — a role that finds her running two major departments.

“I make sure that these teams are working well individually and collaboratively, and that we have a strong identity as a team and know what we’re working toward,” Houseman says. “Part of that work comes out of identifying common purpose.” The teams have different purviews, of course. Hematology treats blood disorders, and oncology treats cancer. But the teams share inpatient space in the Hospital and, more than that, they share a common, overarching goal: to take good care of the children who cross their paths. For Houseman, that’s where blue skies

come in. When she was still quite new in her role, she felt like she would benefit from some collaborative work highlighting what the two teams she was now overseeing were trying to achieve together. In May 2018, the teams started working on a program statement — a proclamation summarizing their shared purpose. Working groups from both teams held a four-hour session to come up with the first draft of a program statement. From there, the draft went to the Hospital’s Family Centred Care team, which provides family-focused insights, for feedback. Houseman’s teams felt confident with what they’d created.

Excellence through compassion and knowledge, together every step of the way.

STOLLERYKIDS.COM

But when asking the question, “Who are we?” the answers are never predictable. The early iteration of the program statement included the word “journey.” But a family advised that health care isn’t always a journey. A journey implies a place you depart from and another at which you arrive. For some children, there is no destination — at least, none

they’d choose to visit. Originally, the statement also included the word “hope,” as hope seems like an obvious, maybe even crucial, requirement in health care. But, Houseman says, “Some families felt like, as healthcare providers, it’s not our job to hope. Our job is to know more than hope, and what [patients and families] need

to hear from us is more than just, ‘We’re hoping their treatment plan will work.’” With that feedback in hand, the hematology and oncology teams got to work revising the program statement. They landed on something that felt more honest: “Excellence through compassion and knowledge, together every step of the way.”

Donor Dollars in Action Here’s a closer look at two recent ways the Stollery Children’s Hospital Foundation has helped support the Stollery’s oncology and hematology departments:

Initiative

Since 2017, the Foundation has provided $900,000 to the pediatric palliative care team to help enhance three disciplines known as ASSIST, including administrative support, a psychologist and a registered nurse.

Initiative

Over the last two years, the Foundation has provided $136,000 to the pediatric hematology program for Iron Chelation Therapy and Crono pumps. HOW IT IMPROVES PATIENT CARE

Excess iron needs to be removed from the body, and Iron Chelation Therapy is the treatment the Hospital provides, using medications to remove that iron. Without adequate chelation, kids with excess transfused iron will die in their teens from heart complications. Foundation funding has also helped to purchase portable, easy-to-use Crono pumps, which provide nightly infusions of medication into a deep layer of a patient’s skin.

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The Aid for Symptoms and Serious Illness Support Team (ASSIST) works with families and other health-care providers (including pediatricians, specialists and home care providers) to ensure families get support when a child’s illness is first diagnosed, and that they have help when making decisions and planning for care. The team also works to ensure the family gets the care they need for a child who is dying at home, in the hospital or a hospice, and that parents who have lost a child receive grief support.

ILLUSTRATIONS ISTOCK/ GETTY IMAGES PLUS

HOW IT IMPROVES PATIENT CARE

teamwork DID YOU KNOW?

PHOTO COURTESY AMANDA MURRAY

Of the many patients who visit the Stollery, 37.5% come from outside the Edmonton zone.

As Houseman explains, the new statement conveys the message that, “We don’t know what the future holds, but we’re right there with you, moving forward.” The word “knowledge” is a nod to the departments’ emphasis on research, and “compassion” takes the place of hope, which makes sense; hope can only be felt, but compassion can be practiced. For the two teams, the feedback from the Family Centred Care team was a quiet revelation. Nicole Spreen, a unit manager in pediatric hematology and oncology, had felt a strong attachment to the word “hope” at first, but came around. The program statement, she says, refined what they say about what they do, which in turn changes what they actually do. “The statement showed us we had to watch the word choice we used with families, and it taught us how to understand these families’ thought processes,” Spreen says. “I just think each of us realized we’re one team, we’re there to help each other. And that brings us together.” That was Houseman’s goal, after all: to unite these teams with a shared purpose of taking better care of children with cancer or blood disorders. It’s a goal they had all along, but now it’s somehow deeper. That’s the funny thing about saying things out loud, or being forced to articulate things that usually live in your head. You probably already know the basics of why the sky is blue. But explaining it means more than teaching it to someone else — it means learning more deeply, too.

Sharing Insights to Make a Difference IT ALL HAPPENED SO FAST. From the end of the soccer game in January 2016, when 12-yearold Katelyn Murray complained about a pain in her back, to when she checked out of the Alberta Children’s Hospital in Calgary just a few days later, she’d gone from being a typical teenager to a teenager with leukemia. It turned out Murray not only had leukemia, she had a rare type called Philadelphia chromosome. “When I first got diagnosed, the doctor said it’d just be a little blip in my journey,” she says. “The prognosis was really good, like 97 per cent [survival rate]. But once they found out it was this rare type of leukemia, it dropped to half of that.” Murray spent most of 2016 in the Stollery, constantly sick, even

staying 48 days straight once. Sometimes she was scared, but she always remained hopeful, thanks in no small part to the Stollery staff. Murray says Dr. Paul Grundy would sometimes allow her to go outside in a wheelchair or her hospital bed with a nurse and a child-life worker, and she’d lay on the grass among the trees. “I’m the type of person who has to be outside and with people to feel better,” she says. “And that was something he understood about me. The staff were really good at knowing what I needed.” Now in remission, Murray is regaining her strength and getting back to normal. She also joined the Stollery’s Youth Advisory Council, a group that provides a youth perspective to Family Centred Care and is part of a subcommittee working on a range of projects. Among these projects is a set of “trading cards” that showcase different Stollery staff members, so patients can flip through the cards, read about the doctor coming to treat them, and not feel overwhelmed by all the new people in their life. She also gave a speech about her health-care experiences at the Foundation’s 2018 Snowflake Gala. “I just want to share my point of view and tell everybody how the Stollery helped me, and how they can support the Stollery,” Murray says. “I want to use my experience at the Hospital to improve the experience of future patients.” Murray recently marked a big milestone: one year without chemo. How did she celebrate? With a soccer game, of course.

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EDITOR’S NOTE: The provincial government deferred this capital project in advance of its 2020 budget

Improving ACCESS

After struggling with untreated mental health issues in her early teens, Annie Belley is happy that gaining access to care will become easier for other Alberta teens BY ELIZABETH CHORNEY-BOOTH • PHOTO BY SHEENA RIENER

nnie Belley was around 15 years old when her mom, Reena, began to suspect that her daughter’s emotional struggles pointed to more than typical teen angst. Like many girls her age, Belley periodically felt depressed, but her mother suspected she was dealing with a fairly serious mental illness. In response to these concerns, Belley’s family doctor referred her to psychiatric care, but the wait-list was long and an appointment never materialized. Belley’s mental health problems escalated and, at the age of 17, she experienced a manic episode that was so acute, her family had no choice but to take her to the emergency room for immediate care. “We had to get to that emergency level for me to get help,” Belley says. “It was almost a requirement to get help, to be on the brink.” Belley was diagnosed with bipolar disorder and spent three months at

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the Royal Alexandra Hospital (RAH) undergoing treatment. Once in care, Belley says that the psychiatrists and nurses she encountered were incredibly supportive and helpful — but she wishes she’d had access to them earlier. By the time she did have a regular psychiatrist,

THE FACT THAT IT’S A NEW FACILITY IS SO INCREDIBLY HELPFUL BECAUSE IT’S REALLY EASY TO FEEL FORGOTTEN IF THE BUILDING ITSELF FEELS LIKE IT’S BEEN FORGOTTEN. ANNIE BELLEY

he told her she was the most seriously bipolar adolescent he’d treated over the course of his career. Belley made two more trips to the emergency room after her diagnosis and did another inpatient stint at the Alberta Hospital as a young adult. Now 25 years old, she is in recovery, in a healthy long-term relationship, and is juggling a part-time job and taking online courses in hopes of getting into nursing school. Realizing that art had a therapeutic also earned an arts degree from the Alberta College of Art and Design (now the Alberta University of the Arts). While Belley says that she didn’t mind being in the hospital — it made her feel safe and supported — she knows that inpatient care can be frightening for many kids with mental health issues. She is hopeful that the newly announced children’s and adolescent addiction and mental health centre, projected to open in 2024 in Edmonton, will not only

mental health ANNIE BELLEY WANTS HER OWN STORY TO BRING HOPE TO YOUTH GOING THROUGH SIMILAR STRUGGLES.

EDITORâ&#x20AC;&#x2122;S NOTE: The provincial government deferred this capital project in advance of its 2020 budget

STOLLERYKIDS.COM

mental health 30%

80%

The new building will offer 30% more beds and 400% more day-treatment opportunities. provide more services so that youth don’t have to wait until they’re in an emergency situation to access care, but able environment for patients. “The fact that it’s a new facility is so incredibly helpful because it’s really easy to feel forgotten if the building itself feels like it’s been forgotten,” she says. “It can feel so isolating to be in an old building, world.” With plenty of reason to be optimistic about her future, Belley is also doing her part to make the process of getting help easier for teens. For three summers she volunteered at the RAH to run an art program for youth undergoing mental health treatment, and she and her parents are also involved with a parental and youth advisory committee that works with Alberta Health Services. Most of all, Belley wants to continue to share her story to give hope and encouragement to young people going through struggles similar to her own. “It’s important for people to see that it is possible to go out and live your life in the way you wanted to before your diagnosis,” she says. “A diagnosis isn’t a period at the end of a sentence. It’s just

The new facility will handle 80% of cases in the Edmonton zone, and will be the specialized centre for all of northern Alberta.

1 in 2

70% of mental health problems begin in childhood and adolescence, affecting 1 in 2 Canadians by age 40.

A Transformative Investment THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION has a long-term, ongoing com mitment to child and youth mental health. Because of stories like Annie’s, the Foundation has made it a priority to help change how mental health care for children and youth is thought about, talked about and delivered so that kids from backyards across Alberta get the best chance to live a long and healthy life. In February, the

Foundation announced it would be launching a $26-million, five-year fundraising campaign to help fund specialized facilities and family-centred programs in the new child and youth addiction and mental health centre that will be built on Alberta Health Services land just east of the Glenrose Rehabilitation Hospital. The funds raised will complement a $200-million investment by the Government of Alberta. The new facility — which will bear the Stollery name in recognition of this being one of the single largest commitments Alberta Health Services has ever received — is projected to open in 2024. In addition to 101 much-needed inpatient beds, the building will be home to a host of highly special ized mental health programs and crisis services, including walk-in and urgent care clinics, special ized outpatient clinics, a mobile response team, on-site school programs, a family resource cen tre and a therapeutic recreation complex. Construction of the new building is expected to begin in the spring of 2021.

DONATE TODAY Visit stollerykids.com/mentalhealth to learn more and donate today. 36

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EDITOR’S NOTE: The provincial government deferred this capital project in advance of its 2020 budget

paying it forward

MARRELLI FAMILY PHOTOS SUPPLIED

olunteering for a cause can really bring a family together: kids learn the importance of giving back, quality time is spent with one another, and everyone gets out of the house to engage in an activity that has real meaning. This kind of work can feel especially meaningful to a family when they volunteer together in honour of a lost loved one. In September 2015, Ariana Vittoria Marrelli, the youngest of Heather and Fiore Marrelli’s six children, passed away when she was just a year and a half old. Shortly after Ariana was born she started experiencing seizures and was then overcome by a number of complicated health problems that prohibited her development and ability to thrive. Throughout Ariana’s illness, the Marrelli family spent considerable time at the Stollery Children’s Hospital. While no one ever wants to be put in a position where their child is in the hospital, Heather Marrelli remembers the kindness and compassion that her family experienced while staff were caring for Ariana. “One thing I really loved was the family-centred care they had at the Stollery,” Heather says. “They were so good at including our entire family and asking what our other kids needed.” Shortly after Ariana’s passing, the Marrellis got deeply involved in volunteering with the Stollery Children’s Hospital Foundation. The entire family was touched by how much comfort they

HEATHER, ANTONIO AND ALYSSA MARRELLI VOLUNTEERING AT THE TEDDY BEAR FUN RUN.

Life Lessons The Marrelli Family has found many meaningful ways to show their appreciation to the Stollery Children’s Hospital BY ELIZABETH CHORNEY-BOOTH

were offered during Ariana’s treatment, especially by the small but thoughtful details like massages or sandwiches. They wanted to ensure that other families would receive the same level of care. “I was so thankful for the help the Stollery gave us,” Heather says. “It really opened our eyes to how much the little things that are offered at the Hospital can make a huge difference. After spending time there, we wanted to be able to give back and knew that we were in a position to do that.” Both Heather and Fiore have sold 50/50 tickets at Foundation events. In addition, they’ve done work with the Foundation’s Snowflake

Gala, its Joy Ride and Wheels for Wellness partnership events, and organized the Stollery Youth Network’s booth at last year’s Devon Days, which was in the Marrellis’ hometown of Devon. The family also supports the Foundation’s Family Day Classic event, which coincides with the date of Ariana’s birth. The Marrellis’ 18-year-old daughter Alyssa has been an especially passionate member of the family when it comes to volunteering. Alyssa has been involved with the Stollery Youth Network leadership team for the past two years and has also given her time to the Snowflake Gala’s teen lounge and the Teddy

Bear Fun Run. Though she’s moving away from the area and won’t be involved much longer, she says the experience has been so rewarding that at one point she even thought about seeking a job with the Stollery Children’s Hospital Foundation to further immerse herself in giving back. “The goal with the Stollery Youth Network is to raise money, but it’s also about getting teens involved,” Alyssa says. “I loved showing them that it’s fun but also really nice to help out families in need.” While the Foundation appreciates all of its volunteers, Shelley Borowski, program director of volunteer engagement and the Stollery Women’s Network, says there’s something special about families that volunteer after having used the Hospital’s services. “This is a family of doers,” Borowski says of the Marrellis. “They roll up their sleeves and jump in. For them, it’s all about being supportive and giving back, and they instill that in their children as well.” Heather, who homeschools her kids, says that the experience of volunteering has helped all of them learn valuable life lessons. Despite their busy family schedule, they continue to volunteer as much as they can. “I feel like our daughter’s life was definitely a teachable moment for [the rest of the kids],” Heather says. “They learned compassion and just remembering to put others before themselves. I’m thankful that they just want to help out.” STOLLERYKIDS.COM

DR. NATALIE ANTON, IN A PATIENT ROOM WITHIN THE BRAND-NEW PICU AT THE STOLLERY CHILDREN’S HOSPITAL, MADE POSSIBLE IN PART WITH $1.2M FROM FOUNDATION DONORS.

BETTER SPACE,

Happier Place Dr. Natalie Anton shines the spotlight on the Stollery’s new pediatric intensive care unit BY GEOFF GEDDES • PHOTOGRAPHY BY COOPER & O’HARA

HEROES MAGAZINE | SPRING 2019

“W

e see families at their worst, and slowly watch hope replace fear as their child recovers. I have the best job in the world.” Though some would feel out of their depth working with critically ill children and terrified parents, Dr. Natalie Anton is in her element. The divisional

specialist the broader department of pediatrics. “I try to ensure that we are in the loop when opportunities — such as grant funding, professional development and academic promotions — arise through the department,” she says. “I also try to act as a liaison between our own two groups in WE SEE FAMILIES AT the PICU and PCICU [pediatric cardiac THEIR WORST, AND intensive care SLOWLY WATCH HOPE unit], as I have REPLACE FEAR AS THEIR always felt that we CHILD RECOVERS. are stronger working together than DR. NATALIE ANTON separately.” The PICU is a dedicated unit for the delivery of critical care to infants and children with non-cardiac diseases including respiratory failure, sepsis, trauma and post-operative recovery. “It is a high-stress environment,” Anton admits. “[But] one of the unique things about our division is that I can call a colleague day or night if I am feeling overwhelmed or just needing a second opinion about a difficult patient. We look after some incredibly complex patients who are critically ill, many of whom require very difficult decisions to be made with their families. It’s always better to ask for help than to try and figure these things out on your own.” Anton believes support and teamwork are vital components within the PICU, but another key component to providing high-quality care is the actual environment in which that care is delivered. As part of a major expansion to pediatric critical care, the PICU has just undergone a total renovation — and Anton director of the pediatric intensive care couldn’t be more excited. unit (PICU) at the Stollery Children’s “The design and transition to the unit Hospital feels right at home ensuring has been a team effort all around,” she that patients and their families receive says. “We have a Change Adoption Team, the best care possible. which is comprised of representatives Anton joined the Stollery in 2000 as a from all groups within our unit — RNs, staff intensivist and assumed the role of RTs, educators, clinical nurse specialdivisional director in 2017. One of her priists and practitioners, unit clerks and mary duties in this role is helping connect pediatric aides. Each group [has been] the Division of Pediatric Critical Care to

able to look through the design, suggest changes and find ways to make the transition as seamless as possible.”

BREATHING ROOM

Anton says when she got her first sneak peek of the new PICU, her breath was taken away. Where previously there were 12 beds in one open-floor unit, there are now 16 single-patient rooms that provide privacy for families and the best possible healing environment. A dedicated family space within each patient room includes a pullout couch and cupboards. In addition, the new family waiting room has comfortable seating as well as a microwave, coffee-maker, television and computer, and access to private showers and bathrooms. “It’s a quiet, closed off area that is just steps away from the child’s bedside,” says Anton. “Preserving those small comforts in times of incredible stress and anxiety will be life-changing for parents.” The renovation also includes two dedicated isolation rooms and two laminar air rooms, offering OR-quality air exchange to help prevent the spread of infections. This will allow for surgical procedures within the ICU without the fear of cross-contamination, which will further enhance patient care. In assessing the impact of the changes on her and her team, Anton cites space and convenience as common themes. “It became clear over the last five to 10 years how cramped and uncomfortable it [had been] in our space for patients and staff,” she says. “When you add in all the equipment we’ve adopted thanks to advances in technology, it’s hard to put patients and machines in one room and still be able to do our job effectively. Spreading things out makes a huge difference for patient care.”

HEALTH HUB

Within this spread-out space, Anton says, is a new feature that will reach far beyond the Hospital’s four walls: a transport team workroom, equipped with telehealth and central monitoring technology. The PICU serves as a major STOLLERYKIDS.COM

specialist pediatric trauma centre for northern Alberta, as well as the referral centre for solid-organ transplants in Western Canada. It has a busy transport service, co-ordinating more than 200 transports a year of patients from all over northern Alberta and the territories. “[Previously], the equipment for the transport team [was] scattered throughout the Hospital, which [was] problematic for a transport program that is one of the busiest in the country,” says Anton. “The new clinical workroom [boosts] efficiency for this critical program.” Other elements of the new look include a respiratory therapy workspace and extracorporeal life support (ECLS) workroom, a nutrition alcove, a medication room, a supply room and central equipment storage. While Anton is pleased with each of these improvements, there is one element in particular she believes is the perfect prescription for parents and children in their darkest hour: natural light. “The lack of natural light in our [old] unit was the most glaring deficiency for me,” she says. “When you have daylight streaming into a room, it’s amazing how it elevates the mood.” Half of the new unit features large windows facing the courtyard, and ambient night lighting is also provided. The exposure to natural light is vital for preserving the day-night cycle for children and parents and minimizing disruption to patient sleep patterns. “Sleep disturbance is a major component of ICU delirium and post-traumatic stress,” says Anton. “We must use a lot of sedatives and analgesics to keep patients comfortable, and that can mess with their

NATURAL LIGHT AND BRIGHT, HAPPY COLOURS HELP MAKE THE STOLLERY’S NEW PICU A MORE WELCOMING AND COMFORTING PLACE FOR PATIENTS AND THEIR FAMILIES.

natural sleep rhythms. Having windows, other lighting, and noise reduction gets patients to sleep rather than just being sedated; there’s a big difference.”

LOOKING FORWARD

Upon reflecting on all the effort that has gone into the creation of the new PICU, Anton is grateful to the colleagues who led the charge. “The overall design, attention to detail and countless hours of commitment to optimizing the new unit fell squarely on

the shoulders of our leadership team: Trina Adams, Susan Huddleston and Dr. Laurance Lequier,” Anton says, adding that their undertaking will be worth it. “[I think] the new space will have everyone excited to come to work. We look forward to having some breathing space around patients and a window where they can see hope instead of tubes, lines and anxiety. Just the term ICU strikes fear in the hearts of families, so anything that lifts their spirits will do us all a world of good.”

The Stollery PICU BY THE NUMBERS

$1.2M

Funding from the Foundation for the new PICU.

725

PICU patient visits last year.

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5.2

Average length of stay, in days.

37.5%

Inpatients from outside the Edmonton zone.

Single patient rooms in the new PICU.

from the heart

Community Pride Through his generous donation, Ryan Pomeroy is playing a significant role in bringing a Stollery level of care to the neonatal intensive care unit in Grande Prairie’s new hospital BY JENNIFER FRIESEN

espite being born in Fort St. John, Grande Prairie was “always kind of home base” for Ryan Pomeroy. The CEO of Pomeroy Lodging spent both his early grade school and college years in Grande Prairie, watching it grow. He left the small city after college to pursue a professional volleyball career, allowing him to travel the world, but he returned in 2004 to work for the family business, eventually becoming CEO. He laughs and says kids today would never believe what the old leisure centre looked like when he was growing up playing hockey. Pomeroy and his family have always been passionate

about helping to advance the communities around them, donating up to $3 million per year to charities across their hotel business’s many Canadian locations. Now, he’s chosen to invest in the health care of children in his own backyard. As a member of the Stollery Children’s Hospital Foundation’s board of trustees for the past four years, Pomeroy knew of a project that was percolating in Grande Prairie — and he was eager to help. The Foundation partnered with the Grande Prairie Regional Hospital Foundation (GPRHF) to help fund programming and equipment for a neonatal intensive care unit in Grande Prairie’s new hospital, which is currently under construction.

RYAN POMEROY MAKING HIS $500K GIFT AT THE GRANDE PRAIRIE FESTIVAL OF TREES IN NOVEMBER. ON THE LEFT IS STOLLERY PRESIDENT & CEO MIKE HOUSE, AND ON POMEROY’S RIGHT IS THE EXECUTIVE DIRECTOR OF THE GRANDE PRAIRIE REGIONAL HOSPITAL FOUNDATION, KEITH CURTIS.

Last year, GPRHF launched a $20 million “Key to Care” hospital campaign, and the Stollery Children’s Hospital Foundation launched a two-year sub-campaign to raise $1.5 million for new pediatric equipment, a youth mental health unit and familycentred care programs. With three sons at home, Pomeroy says it was “a really easy decision” to get involved in the Foundation, and even easier to support the new Grande Prairie campaign. To kick things off, he made a personal and corporate donation of $500,000 to the project — covering one third of the campaign’s goal. “We have young kids, so this really resonated with me and my wife, Allison,” he says. “Having a sick kid doesn’t just affect the kid and the parents, it affects the whole family [and] takes precedence over everything else. Unfortunately, getting [the right] care can take a lot longer than it needs to if you’re commuting to another city.” Grande Prairie has a young population, with nearly 22 per cent of residents under the age of 15, according to a 2016 census report. In 2018, the Stollery Children’s Hospital responded to 737 pediatric patient visits from Grande Prairie, including 67 pediatric transports.

“These children need the Stollery level of care,” says Ryan Drury, senior development officer with the Stollery Children’s Hospital Foundation. But, Drury adds, they need this care as close to home as possible, as research shows children recover more quickly when they aren’t transferred to a different city. Pomeroy describes a strong sense of community in Grande Prairie, saying that people would give the shirts off their backs to help someone else. He wants to be a part of paying that forward by helping to support the new hospital and its family-focused care. “You think about the sacrifices the average person has to make just to deal with a sick child; a lot of people can’t afford to take time off work, but they have to. These challenges have long-standing impacts, so there are a lot of reasons to support children’s health and programs.” The project has been years in the making, according to Drury. He says that Grande Prairie is vital to outreach in Alberta’s health-care system, especially in northern Alberta. While the new Grande Prairie Regional Hospital is still under construction, the facility’s current Queen Elizabeth II Hospital is often the first point of contact for medical emergencies coming in from surrounding communities. “Having [Pomeroy] and his family make such an impactful gift for a cause and community they care so much about is remarkable,” says Drury. “It really does get the momentum rolling. This isn’t just a gift for Grande Prairie, it’s a gift for all of northern Alberta.” STOLLERYKIDS.COM

special connections TENEESHA LEVY AND HER HUSBAND.

the Royal Alexandra Hospital, and she knows that the use of crucial equipment — ranging from infant ventilators and phototherapy lights to special pocket shirts used to hold babies during kangaroo care — has been made possible by funds raised by the Stollery Children’s Hospital Foundation. “When you work on the front line, you’re going to see things that the average Joe wouldn’t think of or understand,” Levy says. “Feeding premature babies is not the same as bottle or IN 2017-18, THE breast-feeding a typSTOLLERY NICU AT THE ical newborn. There’s ROYAL ALEXANDRA a lot of equipment we HOSPITAL SAW 1,268 need, as well as things PATIENTS. that aren’t covered by health care because they aren’t considered essential, but can be important to a new baby’s development.” Levy and her husband started buying Mighty Millions Lottery tickets while she was still in nursing school, but purchasing the tickets has become even more important to her since starting The grand-prize winner of the 2018 her job in the NICU. Having been raised by a single mother, Levy says that she Mighty Millions Lottery has a has always had a deep connection to special Stollery connection working with women and children and giving back to initiatives that offer supBY ELIZABETH CHORNEY-BOOTH port to families going through difficult times. Even before graduating from learned that she’d won the lottery’s hen Teneesha Levy nursing school, she knew that the NICU grand-prize $2.4-million show home, woke up on the mornwas where she wanted to be so that which she and her husband moved into ing of December 6, she could dedicate herself to caring for earlier this year. Though she is over2018, to see a series moms and babies. joyed with her win, Levy still finds it of missed calls on her While the odds of winning a second challenging to adjust to her new reality. phone, she wondered why someone had grand prize are not in her favour, Levy “It still feels like we’re just staying been trying to reach her so persistently. is committed to the cause and says in a really fancy Airbnb,” Levy says. “It Levy and her husband had just returned she’ll continue buying Mighty Millions really doesn’t feel real, even though I to Spruce Grove from a trip to visit famLottery tickets in the future. Even know it is.” ily in Australia and were both jetlagged, though she and her co-workers do their While winning a prize like this would so, understandably, her phone was part for families every day, buying the be the thrill of a lifetime for anyone, on Do Not Disturb. When she finally tickets is a simple way for her to offer Mighty Millions Lottery has a special connected with the mystery caller and even more support for the babies she place in Levy’s heart because, every day, learned that it was a representative cares for. she gets a first-hand look at what hapfrom the Stollery Children’s Hospital “I see where the money goes, so conpens with the money raised from ticket Foundation’s Mighty Millions Lottery, tinuing to buy tickets is a no-brainer,” sales. For the past three years, Levy Levy figured she may have won an iPad Levy says. “This isn’t just a win for me, has worked as a nurse in the Stollery or a ski trip. it’s a win for my whole NICU family.” neonatal intensive care unit (NICU) at Imagine her surprise when she

Home Sweet Home

HEROES MAGAZINE | SPRING 2019

PHOTO BY TWO WORDS PRODUCTIONS

THANK

YOU OVER $310,000* RAISED AT THE 9TH ANNUAL STOLLERY FAMILY DAY CLASSIC - A TOTAL OF $2.9M SINCE 2011!

proudly supporting

The four-day Stollery Family Day Classic invitational is about active youngsters playing a game they love, having fun and giving back in support of the Stollery and Hockey Edmonton. Money raised for the Stollery will help fund mental health support programs at the Stollery Childrenâ&#x20AC;&#x2122;s Hospital, including family counselling and sibling support programs. Thank you to Steve Serdachny and the Stollery Family Day Classic organizing committee, and to the many participants, volunteers, sponsors and donors! For further information about the fundraising goals and costs for this event, please call 780.433.5437 *Gross fundraising total

To learn more, visit familydayclassic.com

Heart transplant to backyard, Stollery care gets kids there. Donate Today

stollerykids.com

Adelaide, 10 Grande Prairie, AB

53,929 293,423+

EMERGENCY ROOM VISITS

PATIENT VISITS AND GROWING

44%

OF INPATIENTS COME FROM OUTSIDE THE EDMONTON AREA

Adelaide loves riding her bicycle, doing gymnastics, going on scary rides at the amusement park and snuggling her cat, Yoda – all thanks to a heart transplant she received at the Stollery Children’s Hospital. Born healthy, Adelaide developed breathing difficulties at three weeks old and was airlifted to the Stollery. Diagnosed with a heart condition, she went on an artificial heart at three months old that stabilized her until a donor heart was available at six months. Adelaide gets ongoing care at the Stollery and may need another transplant in the future, which is why her family is grateful to have a world-class children’s hospital right in their backyard.

780.433.KIDS (5437) | stollerykids.com/inmybackyard | #StolleryBackyard

*per year