When COVID-19 forced us all to be physically distant, isolating in our homes, we shared that this measure was all too familiar for families who have children with life threatening and chronic illness. Those of us who never experienced isolation due to sickness had a glimpse of understanding what it looked and felt like. At Chai Lifeline Canada, because of our experience supporting families who have isolated due to illness, we became a resource to the wider community. However, we quickly learned that COVID-19 restrictions would propel us and our Chai families even further, as we coped with illness.
As we look forward to life-after-lockdown, we reached out to our Chai families and spoke to them about the adversity that COVID-19 has added to their pre-existing challenges of childhood illness.
NOTE: All names have been changed to respect the privacy of our families.
All parents describe pre-COVID Sick Kids as a world unto itself with a ‘hustle and bustle’ filled with people, support and activities. Chai Lifeline Canada was there daily with treats and toys, staying for hours to keep kids company or to give the parents some respite. Volunteers came by to teach kids to play the ukulele. Clowns roamed the halls blowing bubbles and making jokes. There was a special lounge where kids could go to play pool, ping-pong or video games and art activities were always available – every floor had a lounge of some kind. There was story hour for the little ones in the library. The Tim Horton’s down the hall was always a fun distraction or ‘outing’ for a hot chocolate. Holidays were always festive with decorations, musical performances and volunteers handing out treats. Even though it’s a hospital filled with sick children, it didn’t feel depressing.
All of those things that made having to be there a little more bearable – the volunteers, the activities, the entertainment, the visitors – all of it ground to a halt.
In March 2020, when COVID-19 safety measures were just beginning, Heather’s four-year-old daughter was admitted to SickKids with a fever. This was not unusual for a child with a central line – any fever requires hospitalization for a minimum 40-hour stay. Heather has two children who have medical complexities. As a family, SickKids is a familiar place and it was immediately very clear how much COVID-19 had changed things.
“It was a really hard admission. I couldn’t see my other daughter and no one could come in to relieve me. You’re locked in your room – not literally – but it felt like that. We didn’t want to move around the hospital because it was just when everything was coming out about COVID. We stayed in her room straight for 48 hours. It was not a long admission but it was a tough one because it was just her and I.”
The one-parent-or-guardian rule has been excruciating for families with children undergoing complex surgery. Cheryl’s son was 10 years-old and needed neurosurgery and they had to decide which parent would be there with him.
“We couldn’t even go to the hospital together. To send your son off to neurosurgery alone, no parent should have to deal with that. You can’t help but think, is he going to survive the surgery? He’s fine now, so I can tell the tale, but when you’re in it, and emotions are so high – to stand there alone, it’s like death. It was, I think, the hardest. Just to be there alone.”
Brenda’s daughter was 15 when side-effects from cancer treatment required open-heart surgery and she found herself alone waiting while her daughter underwent the eight-hour procedure. When she had surgery the year before, Brenda and her husband were there to support each other. Because of the COVID-19 restrictions, her husband waited at home for updates by phone.
“They stopped her heart and attached her to a machine to have her heart and lungs go while they were working on her. It was very scary. They stopped my daughter’s heart.”
Brenda described what the waiting room looked like. The only other people there were other parents, who were also alone. They sat in single seats spaced far apart with chairs sectioned and taped off between them to enforce social-distancing.
“Nobody can even come and hold your hand when you need that more anything in the world. And everybody’s got the same look on their face. And it’s just such a strange, isolating feeling.”
When Sydney was five years-old, she lived at the hospital for 6 months and was attached to a Berlin heart (an external heart to function when your heart fails, as a bypass), as she waited for a transplant. She felt like the hospital was her home and she felt safe there. Grandparents and friends came to visit and every procedure was done with gentle care and attention. This place where she felt comfortable and at home had turned into something terrifying through COVID-19.
New protocols required COVID-19 tests upon entry and anyone who had those tests done in the early days recalls how uncomfortable and painful they were. In July 2020, drive-thru COVID testing was established for all patients prior to entering the hospital.
Sydney’s father, Jacob recalls those early days and how scary any visit to SickKids became when she realized that she had to get tested for COVID.
“It’s nose swab after nose swab, and she was very apprehensive. There was a planned procedure that she needed to get done in July, and there was a drive-thru set up for COVID swab tests. And my daughter just lost her mind. Right away, here comes a swab. And she’s screaming her head off in the backseat of my car.”
As ICUs in hospitals all over the city began to reach full capacity, SickKids hospital took the extraordinary step of opening up an ICU for adult COVID patients (up to 40 years old). For parents with severely immunocompromised children, this was an exceptionally frightening prospect. Knowing that there were COVID-19 patients in such close proximity was something to grapple with.
Eden’s 8 year-old son Jack has Cardio Myopathy – he was born without a spleen – and has been in and out of SickKids his whole life. In March, he was rushed to SickKids in a secured ambulance.
“When we got there, I saw that there was a part of the emergency wing that was completely sealed off with tape and plastic. When he had to go for an X-ray, the emergency doctor walked us there herself because she was afraid that we would somehow get lost and find ourselves walking through the area where she did not want him to be exposed. And that was a very … it was very sobering. It was no longer news. It was no longer just numbers on a screen. It was reality.”
While most Canadians have lived under some form of stay-at-home order over the past 14 months, families with sick children have had to operate on a different plane entirely. One parent at the hospital and the other parent at home with neither school or extra curricular activities. Additionally, there are also no visitors, no babysitters, no family and friends, no volunteers coming into the house to help, no respite.
While Cheryl stayed at the hospital with her 10-year-old son, her husband stayed home with their five other children.
“The infrastructure that we’re used to, and that we’re accustomed to because we’re part of such a close network in our community that is our lifeline, was gone. And when that is taken away, it’s something else.”
At one point, the family was able to hire a caregiver to help at home and she was there from 4pm – 7pm. Cheryl explained that respite was vital because for her it meant that her other children got the attention from both parents. A friend asked her if she was going to take the chance to sleep and eat during those three hours?’ She said “No, these kids who’ve been left for two and a half months alone and are from two years-old to 15 years old, they needed their parents.”
Jack’s mom Eden is a single parent with 6 children at home ranging in age from 2 to 16. One is on the spectrum, one has mental health challenges. After their visit to the hospital in March, Eden and her family of six were housebound too. She pulled them all from school for fear of exposure. It has been a daily struggle.
“That was that — you know, we stayed home. I had groceries delivered. We were very cautious. Last summer when things loosened up a little bit for everyone, but not for us. I couldn’t even bring anybody to babysit and I couldn’t bring siblings with me to SickKids to the clinics when I had to go for Jack.”
There is also the very real toll that these times and circumstances have taken on the parents of sick children, which cannot be overstated. The COVID-19 restrictions put in place have removed the vital support that parents need for themselves. While well-meaning friends and community agencies make contactless deliveries leaving toys, books and meals at the door, it cannot replace face-to-face, person-to-person care.
Cheryl explains that “it was really detrimental. I think more for my husband and I, his caregivers, because at the end of the day, my son and my kids have their parents who love them. Somebody can drop off Slurpees, somebody can drop off video games, but the support of an adult to an adult, whether it’s a volunteer in the hospital, whether it’s a social worker, whether it’s a rabbi or whatever religion, somebody is part of when your kid is that sick, you need that human contact.”
Heather’s family have all been housebound since early last summer. With two medically fragile children, it wasn’t really a choice. “No one knows what their medical conditions would be like with COVID and we’re not willing to risk anything. So we’ve all been home. The girls are both doing school virtually and we’re working from home. We really don’t go anywhere other than to our appointments.”
Heather and her husband have both had their first COVID vaccinations, but that does not do much to ease their anxiety or circumstances.
She explains that she’ll personally feel a little bit more comfortable going to SickKids vaccinated. “One of my biggest fears is that if my husband or I get sick, we have no one to take care of the kids. No one that can do all their medical stuff. So as much as I worry about the impact of them getting COVID and what it means for them with their other illnesses, I worry about, like, what happens if something happens to my husband and I because we’re the only ones who do their care.”
We’ve seen headlines over the last 18 months that “the kids are not alright”. To this we can add we now know that often the parents are not alright either.
As our world begins to slowly open up, we do so with eagerness, that is tempered with caution. Knowing that every day we are edging a little bit closer to holding hands and big hugs, feels good.
At Chai Lifeline Canada we are passionately devoted to alleviating the burden of those facing medical challenge. From the moment of diagnosis, through the arduous months and years, in good times and bad, Canadian families have discovered that Chai Lifeline Canada is a friend for life.
Chai Lifeline Canada. Fighting Illness with Love.
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