Up to 100 children a week are being hospitalised with a rare disease that can emerge weeks after Covid-19, leaving them in intensive care, doctors have said.
In a phenomenon that is worrying paediatricians, 75% of the children worst affected by paediatric inflammatory multi-system syndrome (PIMS) were black, Asian or ethnic minority (BAME). Almost four out of five children were previously healthy, according to an unpublished snapshot of cases.
When PIMS emerged in the first wave of the pandemic, it caused confusion among doctors, concern among NHS bosses and alarm among parents. It was initially thought to be Kawasaki disease, a rare condition that mainly affects babies and infants. But PIMS has been recognised as a separate, novel post-viral syndrome that one in 5,000 children get about a month after having Covid, regardless of whether they had symptoms.
It often involves rashes, a temperature of up to 40C, dangerously low blood pressure and abdominal problems, and in serious cases its symptoms are like those of toxic shock or the potentially fatal condition sepsis. Two children are thought to have died of PIMS since the pandemic began.
While specialists do not believe the disease has increased in frequency relative to cases in the wider community, numbers are higher than in the first wave, with hospitals understood to have been admitting up to 100 young people a week during the second wave, compared with about 30 a week last April.
Between 12 and 15 children every day are believed to have fallen ill since the start of January. Cases have emerged in many places, but most have been in London and south-east England, areas where the new Kent variant of the coronavirus has driven a sharp rise in infections.
Evidence collected by Dr Hermione Lyall, an expert in infectious diseases in children and the clinical director for children’s services at Imperial College Healthcare NHS trust in London, has laid bare the starkly disproportionate impact the disease is having on children of BAME origin.
Part of a presentation she made to a recent webinar attended by more than 1,000 paediatricians showed that, in a “first national report” into 78 patients with PIMS who ended up in intensive care, 47% were of Afro-Caribbean origin and 28% of Asian background – between five and six times higher than the 14% of the UK’s population who are BAME.
Dr Liz Whittaker, the PIMS spokesperson for the Royal College of Paediatrics and Child Health, said: “We are doing research to understand why this population is affected. Genetics may be a player. But we are concerned that it is a reflection of how this is a disease of poverty, that disproportionately affects those who cannot avoid exposure due to their occupation, multi-generational households and crowded housing.”
Separate data collected by Dr Marie White of the Evelina showed that 60% of the 107 cases of PIMS they had treated up until 13 January were black African or Caribbean children.
Dr Habib Naqvi, director of the NHS Race and Health Observatory, called for an inquiry into BAME children’s much greater risk of getting PIMS. “Clearly, urgent investigation is needed now into why black and Asian children are over-represented and more vulnerable to PIMS.
“We are concerned at these early findings and know structural health inequalities can affect the lives of individuals from ethnic minority backgrounds across their lifespans.”
Lyall’s dataset, based on figures from 21 of the 23 paediatric intensive care units (PICUs), also disclosed that 78% of patients had no underlying illnesses and until PIMS had been in good health, which paediatricians said was “very worrying”; the average age of children getting PIMS is 11, but ranges from eight to 14; two-thirds (67%) were boys; only 22% had Covid when their PIMS emerged, while the others had already had it; and almost one in four of those who end up in a PICU develop a heart condition called coronary artery dilation, which is potentially fatal.
Further data presented by experts at the webinar showed that a small number of children with it see their brain affected and suffer confusion, lethargy, disorientation, start behaving unusually and, in rare cases, have a stroke. In addition, in a study of 75 children, eight had suffered heart problems, including myocarditis and ventricular dysfunction.
Most children with PIMS have been taken to one of the NHS’s network of 23 hospitals with a PICU, such as the Evelina and Great Ormond Street children’s hospitals in London and Birmingham Women’s and Children’s Hospital. According to modelling by doctors at the Evelina, cases will peak next Monday and then start to decline.
Whittaker said parents should not be alarmed by the surge in hospitalisations because the recent incidence of PIMS is proportionate to the pandemic’s greater impact on adults over recent weeks. “PIMS can be very serious. But we have seen fewer seriously unwell children [in the second wave] because there is earlier recognition and earlier treatment,” she said.
“It remains rare, and we don’t think parents should worry, as it is far more likely not to affect their child than to affect them. The numbers are low and [PIMS] would not be a reason to keep schools from opening. The median age [of onset] is nine years. We would not close playgrounds.”
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