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Layne (Left) and Huxley (Right) are two children that depend on the Alberta Children's Hospital (Photos provided by Kendra Arnason and Melissa Frazer)
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Alberta Children’s Hospital will be closing 75 per cent of operating rooms and will perform 'life and limb procedures only'. 

The announcement came last week amid the province's healthcare system feeling the immense strain of the fourth COVID-19 wave. Kendra Arnason and Melissa Frazer are but two mothers out of hundreds if not thousands of parents who understand firsthand the devastation that such an announcement can mean for their families and their little ones.

Kendra Arnason is mother to Layne, a bright-eyed, chubby-cheeked, 19-month-old baby girl.

"As a parent of a child who has been in an ICU, I can't tell you how scary it is to know that we're only a few short weeks away from phase two pediatric triaging and knowing that our daughter would require ICU care if she contracted COVID or any other respiratory virus," Arnason said.

Kendra's journey with hospital visits came long before she welcomed Layne into the world. Her pregnancy was rife with complications. When Layne was born, doctors gave the infant a 10 per cent chance of survival. After being in two different hospitals, Kendra and Layne were transferred to the Alberta Children's hospital in Calgary, where the baby girl would spend two weeks of her life.

"There's a lot of families like ours who are there for a really long time and really become part of that children's hospital family," she said. "Her [Layne's] nurses, her doctors, her respiratory therapist, specialist aides, janitorial staff, literally every person there, is there for your whole family."

Layne has spent a total of six weeks admitted to the hospital and has had over 50 outpatient visits. She has Pierre Robin sequence, also known as Pierre Robin syndrome, which means that she has an underdeveloped airway.

"We've been told that if Layne does contract COVID, it will be catastrophic for her."

Layne also has limb malformation on her left foot, a cleft foot, and leg length difference which is caused by amniotic band syndrome. Now that Layne has started walking her mom says that she has issues with balance and falls a lot.

"She's in a lot of pain and now that she's older, she can tell us that," Kendra said.

Layne's surgery, one of many, to help her walking was scheduled for August but was cancelled.

"At this point, we don't have a date for her surgery, so we are just in the waiting game," she said. "It's pretty heartbreaking as a parent when your child falls down or she'll sometimes just stop walking and grab her foot and she'll say 'hurting Mommy'  'ouch daddy' and we know that she doesn't understand why she's in pain and we can't do anything."

Arnason explained that what many people may not realize is that children who have surgeries require ICU care or at least have ICU availability for them. She also said that she considers herself and her family lucky since she believes little Layne can wait, but there are families whose children can't wait in limbo.

"There are a lot of families who have kids who are really, extremely medically fragile," Arnason said. "[There are kids] who can't get the care they deserve right now, and it's even harder because we know their medical providers want nothing more than to give them that."

But Arnason did clarify that she in no way is taking the doctors, nurses, or any hospital staff to task for the announcement.

"It honestly doesn't matter what your political views are or what you think about our government or anything like that," she said. "Our doctors and nurses aren't lying and families like mine aren't lying. This is happening and this is having a real impact."

Melissa Frazer, another mother to four children and mother to Huxley, who also has an array of medical complications, knows all too well what it means to have a sick child and to be a frequent visitor at the children's hospital.

When Melissa's fourth child, Huxley, a summer baby, came into the world, both parents noticed right away that he was a fussy little bundle.

"[So when] he was six days old, he wasn't eating he was really grumpy, he didn't want to be cuddled," she said. "Every time you moved him, he kind of winced in pain."

Melissa rushed her newborn to the hospital, where doctors discovered his bladder was on the verge of rupturing. Huxley's ureters, the tubes that connect the kidneys to the bladder were not functioning properly, pumping urine back into his kidneys, which would result in not only bladder infections but kidney infections. Doctors also discovered he had an aortic bicuspid valve, which means his heart valve does not open properly. Frazer said that since Huxley was born, she has dealt with almost every specialty at children's hospital, including immunology, cardiology, nephrology, urology, and infectious diseases.

"If he catches another UTI [urinary tract infection] or his kidneys aren't getting better they have to go in and actually cut him open from bone to bone, across his chest cavity and they have to remove his ureters from his bladder, move them around in his stomach, straighten them out and then attach him again."

Frazer said the prospect of the children's hospital shutting down three-quarters of their operating rooms is gut-wrenching.

"I have a one-year-old child who needs surgery possibly," she said. "And if he does need it, it's because his kidneys are failing. But to know that there is a chance that they [the hospital] have to delay his surgery breaks my heart."

Frazer said that resources at the children's hospital should not be touched, as it is the only hospital for children, in which all the staff is trained to be the best of the best with their small patients. 

"I wouldn't feel comfortable taking him anywhere else besides the children's [hospital]," Frazer said. "The nurses cuddle him and love him, and the doctors are so good with him."

While the future for both Frazer's and Arnason's children may be uncertain, at least when it comes to what healthcare services the Alberta Children's Hospital may be able to offer in the coming weeks and months, both mothers were unwavering in the fact that their kids, Layne and Huxley, are little fighters and will continue to fight, even amidst a global pandemic and all the insurmountable challenges they have faced in their short lives.

As of today, only two of eight operating rooms will be available on Monday at the hospital.

 Written by Anna Ferensowicz

 

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