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Home Away From Home

In June of 1998, Doug and Kari Siewert and their two children, two-year-old Kaela and one-year-old Josh, welcomed a third child to their family. Krista was born seemingly healthy, with bright hazel eyes and a shock of red hair. Kari remembers having trouble keeping her new baby awake, but when she mentioned it to anyone she was told to be thankful that Krista was such an easy baby. Her mother’s intuition told her otherwise.

At Krista’s two-week checkup, her pediatrician knew immediately this was not just an “easy baby”. Something was seriously wrong. He sent the Siewerts straight to the Stollery Children’s Hospital. After six hours of testing, a cardiologist told Doug and Kari that Krista had congenital heart defects and was suffering from heart failure. Krista was diagnosed with coarctation of the aorta, atrioventricular septal defect and mitral valve regurgitation. In other words, the large vessel in her heart was pinched and, as a result, it had to work hard to pump blood. There were also holes between the chambers where the valves had not formed properly; which resulted in blood overflowing into her lungs. Her mitral valve was not closing properly and blood was flowing backwards through her heart, not reaching the rest of the heart or her body.

Krista was admitted into the Stollery, where she had open-heart surgery a week later, at just three weeks old. Krista’s life hung in the balance during that first surgery. Kari remembers it well and recalls that it seemed like everything that could go wrong did. Krista’s lungs collapsed repeatedly, but she pulled through – only to have to undergo a second open-heart surgery at nine months old.

Two-and-a-half-years later, in the fall of 2001 (after undergoing generic testing to confirm Krista’s condition was an anomaly), Doug and Kari had their fourth child. Luke was born with big brown eyes, a grin that spread as wide as his face and an apparently healthy body. “For a year there was nothing that clued me in,” Kari says. “He was a baby; he sat up, he crawled.” He was developing normally, as fast as she knew.

When he was about a year old, Like started developing strange white spots on his skin. For about six months, he was subjected to tests at the Alberta Children’s Hospital in Calgary. Finally, an MRI determined the unexpected source of his symptoms. Luke was diagnosed with tuberous sclerosis, a condition that just one in 6,000 children is born with. It is often genetic, but since there was no family history of it, Luke’s case was a spontaneous, unpredictable genetic mutation. Tuberous sclerosis prevents his body from suppressing benign tumour growth on his vital organs (kidneys, eyes, heart, lungs and skin) and the brain. After further testing, Doug and Kari were told Luke had 14 brain tumors, as well as a few smaller tumours on his heart (which fortunately went away without intervention). Kari recalls the doctor saying, “if he hasn’t started seizing, he will.” And shortly after that, the seizures began.

Luke had his first brain surgery at two-and-a-half years old, after peaking at 30 seizures per day. His brain tumours cause both minor and life-threatening seizures. Even with surgery and medication, Luke will continue to have seizures throughout his life – which sometimes also cause him to stop breathing – as doctors can never remove all 14 tumours. Unlike cancerous tumours, his benign growths cannot be shrunk down with radiation. As a result, they grow into the brain, changing Luke’s brain cells and becoming part of them.

“When he has brain surgery to take out a tumour, they never just laser a tumour off of Luke. Every time he has brain surgery, they are taking a part of his brain,” Kari explains, fighting back tears. It is a constant juggling act for Luke’s neurology team to decide which tumours are causing the worst seizures – and those that, when removed, will result in the least change of personality and loss of his cognitive ability. “He has no new tumours from when he was a baby; there’s nothing new that’s grown,” Kari says. “Just some of them become active over the years and especially during puberty.”

Hospital visits are part of normal life for the Siewert family. Krista has photos with her cardiac surgeon, Dr. Ivan Rebeyka, the way most kids do with Santa Claus. “We love that man,” Doug says, reminiscing fondly over his kids’ childhood photos. Before every heart surgery, Krista has posed with the internationally renowned pediatric heart surgeon. Now, even as a teenager, the pictures drum up memories. “I haven’t seen him for a long time but I still want a picture [before my next surgery],” Krista says. “It’s cool to have all those consecutive pictures with him.” Krista had her last heart surgery when she was eight years old. At that time her medical team anticipated she would need another at age 14. Her health began declining around that time, but they have been able to delay the surgery – for now. The hope is she will be finished growing before her next operation. “As fast the timing of Krista’s next surgery, we don’t know,” Kari says. “It’s just a waiting game, but it’s inevitable that she’s having another surgery.”

Now 16, Krista is a quiet, deep thinker, an excellent artist and is quick to laugh. She loves horses and cherishes her close friendships. Krista is passionate about social causes both locally and internationally. This spring, she donated a large charcoal drawing to the Spero Gala, a fundraiser that collects money for the ACT Alberta Action Coalition on Human Trafficking in Alberta. Last summer Krista joined a team from her church on a young mission trip to Mexico. Part of that involved organizing quinceaneras (coming-of-age celebrations usually held at age 15) for girls who had been rescued after their families had sold them into prostitution in Mexico City.

Krista credits her heart condition for her compassion. “I think when I was younger I was bothered by [being sick] because I couldn’t run around and play games and do all the things normal kids were able to do. But as I have gotten older, I’ve realized that it has been shaped who I am. I think I would be a completely different person if I was never sick. I am almost grateful for it, in a way,” Krista says.

Krista hopes to become a registered nurse and one day work at the Stollery. “I see how they enjoy their job and, being a sick kid, I want to help other sick kids,” she says. “That’s the main hospital I want to work at; it would be cool to tell the kids that I was once in it. I think I have a deeper care for other people because I have experienced people caring for me and how it affects you. I think because I have suffered I have more empathy towards other people.”

Now 13, Like has an infectious charm that quickly captivates everyone in the room. He has inherited his mom’s warm smile and her sociable personality. If you tell Luke your birthday, he will never forget it (or your age, unfortunately). He loves giving bear hugs, enjoys playing board games and drawing animations. Luke is also the best swimmer in the family.

The Stollery staff have made a big impression on the Siewerts. They have connected with the kids in meaningful ways many times. “There are so many nice nurses there,” Luke says. “I know one nurse that is really nice – well, it’s a male nurse.” Even though Grant does not work on Luke’s unit, he made sure Luke got connected with the Stollery’s first-annual Neurosurgery Kids Christmas Party. This event, where pajamas are the dress code, is entirely put on by volunteers at the Stollery, many of whom are nurses. “The kids loved it,” Kari says while laughing. She recounts some of the incredibly touching words one of the nurses said in a speech to the parents, and notes: “Those nurses see what the parents go through. They see you age, see you going through stuff and they get it.”

Grant also invited Luke to attend Camp Everest at Camp HeHoHa, which is specially designed for kids with brain or spinal cord conditions or injuries. For years, Luke has enviously watched his older siblings attend summer camps and dreamed of going himself, but most facilities are not equipped to respond to his regular seizures. At Camp Everest, medical professionals volunteer as staff so kids like Luke can attend. Luke says he can’t wait “to do lots of swimming” and to have his favourite nurse Grant as his cabin counsellor.

It is not only the staff at the Stollery but also the physical building itself that has become an integral part of the Siewerts’ lives. They have spent Christmases, birthdays and summer holidays there. Even older siblings Kaela, 20, and Josh, 18, feel a connection to it as more than a hospital. “We’ve gone when Krista and Luke are entirely healthy,” Kaela says. “We’ve gone for ‘family night’ to the Stollery, just because of all the weirdly good memories we have there. We’ll just go sit by the waterfall and have dinner and get ice cream and cry.”

The Siewerts have embraced the challenges of Krista and Luke’s conditions as a family. The adversity has shaped and brought them closer together, sometimes even in the face of bad news. “A pretty distinct memory was [after Luke’s] past surgery in January,” Kaela says. “Krista had a whole bunch of cardiac appointments, while Luke was recovering from surgery. So, I was with Luke for the day while mom took Krista to all her appointments. Dad and Josh came that evening after school. We just found out that Krista needed another heart surgery. We were all crying, and it was just one of those awful moments – but it just felt like home.”

Published Summer of 2015, Stollery Children’s Hospital Foundation