Marcy White has spent almost 18 years fighting for her medically-fragile son Jacob.
The battlefront recently moved inside their family home, where she fears COVID-19 could enter with each visit from the nurses and support workers who provide much of his around-the-clock care.
“Jacob is always at risk for catching something as simple as a cold,” the author of ‘The Boy Who Can: The Jacob Trossman Story’ told National Observer. “And a cold for him will either land him in the hospital for a year, which happened once, or have him on breathing machines for days and weeks at a time.”
“From what it sounds like, COVID-19 would hit him even harder, so it’s terrifying,” she said.
But VHA Home Healthcare, the main provider of her son’s specialized care, has so far refused her requests to provide the masks White wants healthcare workers enforced to wear to protect Jacob.
The company cites provincial guidelines, which relate to when healthcare workers must don personal protective equipment (PPE) to protect themselves from patients, and say there is no evidence that healthcare workers not presenting symptoms are contagious.
“PPE is currently in short supply in the province,” VHA’s Chief Nursing Executive Kathryn Nichol said in response to queries. “It is imperative we use Ontario’s scarce resources judiciously and only as required by evidence-based practices.”
“We know this is a very distressing time for everyone and especially for parents with medically-fragile children,” Nichol said. “A history of respiratory ailments does not indicate that health workers providing care should wear a mask.”
The U.S. Centres for Disease Control and Prevention says some spread might be possible before people show symptoms, while Nature reports some initial detailed estimates of such covert cases suggest they could account for 60 per cent of all infections.
Symptoms of COVID-19 — typically a fever, cough and difficulty breathing — usually appear within a week of someone being infected.
“Jacob is always at risk for catching something as simple as a cold. And a cold for him will either land him in the hospital for a year, which happened once, or have him on breathing machines for days and weeks at a time.”
The homecare agency also cited a lack of evidence that COVID-19 is airborne.
But evidence of how long the virus can survive in the air is also evolving. The World Health Organization said last week it was considering “airborne precautions” for medical staff after a recent study showed COVID-19 lingering in the air in some settings. These include during procedures Jacob regularly receives, including suctioning, use of concentrated oxygen, and use of the BiPAP machine that gives his lungs a rest during sleep.
White is not taking any chances.
“Some of these nurses work elsewhere, many of them travel by TTC, so who knows what they may be carrying and what they may potentially bring into our house from other places,” White said, estimating 15 different staff worked with Jacob in the past week.
“Some of the personal support workers go from house to house to house to house, six days a week,” she added.
So as this novel coronavirus outbreak spreads, White is scrambling to secure her own steady supply of protective masks for these home healthcare workers to wear.
A smaller agency that provides only a sliver of Jacob’s nursing care sent masks and gloves last week on the same day White requested them. A woman White did not know dropped off two boxes after hearing about her situation. White declined a cancer patient’s offer to share her supply.
She’s not the only one worried about inadequate protection for a fragile child.
Mairead Cavanagh also fears running out of the masks and other equipment she needs to safely care for her 11-year-old son Maleek at home. In response to COVID-19 dangers she has cancelled nurses who also deal with other clients.
But her larger fear is how he would fare if he needs to be admitted to hospital while COVID-19 is in full swing.
“I’ve talked to other complex medical parents who are terrified of being quarantined in hospital and not able to get home to other kids or vice versa having their child in hospital on lockdown,” she said.
Maleek, who receives all his nutrition as well as IV fluids via an implanted port in his chest (also known as a central line), has been admitted to pediatric intensive care units six times in the past six months, with four hospital admissions since early February.
Cavanagh said she asked Toronto’s Hospital for Sick Children for direction weeks ago but that so far no provisions are being made for extremely fragile kids like Maleek.
“I’m concerned that children like Maleek and families like ours — those caring for the medically fragile and vulnerable — will fall through the social and health cracks in this crisis,” she said. “I’m scared that the ever present social and health inequities that we face on a daily basis will break us in a situation like this.”
She’d said she like Sick Kids to better protect its most vulnerable patients by allowing them to bypass the emergency department and be directly admitted with appropriate screening; loosen the strict visitor policy to allow caregivers to support fragile kids and their families; and provide inpatient support for parents including mental health support and access to food that doesn’t require them to line up at cafeterias.
The province had recorded 412 positive COVID-19 cases (and five deaths) as of Sunday evening, with most initial cases relating to recent travel to a known hotspot or close contact with a traveller. But evidence is mounting that the highly infectious disease is now also spreading within the community.
The province’s laboratories processing COVID-19 tests also have a backlog of almost 8,000 tests under investigation and health authorities are rationing test kits due to supply constraints.
Micheal Hurley, the president of CUPE’s hospital wing, is also concerned about the limited access to PPE of medical workers.
“We had a very tough experience in Ontario with SARS,” he said in an interview. “The workforce was told the virus in that case was not airborne, it was subsequently proved that it was airborne, studies showed that, and we were told to use precautions which proved to be inadequate,” he said. ‘A number of people died and many were made very sick and some of those never worked again.”
A commission that followed the 2003 SARS outbreak recommended that “risk communication to staff reflect a precautionary approach, that it is better to err on the side of caution, especially when dealing with a little-understood new disease like SARS.”
Hurley argues that principle should apply to COVID-19.
But the official guidance has gone the other way, with initial precautions from January regarding dealing with suspected cases being loosened in a March 10 update that limited the use of PPE for healthcare workers.
While N95 respirators had been recommended for patient care and specimen collection and testing, it said two and a half months of global clinical experience and updated scientific and epidemiological evidence had shown that transmission is caused by droplets expelled when an infected person coughs, sneezes, or talks, or by close direct contact with someone who is positive for COVID-19.
It said there is no evidence that COVID-19 is transmitted through the airborne route.
Elliott’s office also noted it planned to spend $50 million to procure additional PPE supply.
Reuters reported earlier this month that some 55 million masks Ontario had stockpiled following the SARS outbreak had expired.
Those masks should be used in lower-risk areas, the Registered Nurses Association of Ontario and the Ontario Medical Association said in a joint statement on Sunday.
CUPE’s Hurley also argued the expired masks could still be used, but the province’s chief medical officer of health, Dr David Williams, said last Thursday that neither the manufacturers nor Health Canada have agreed to release them for use.