A Mother’s Covid Nightmare

Kara Bryan's daughter ended up in hospital with Covid-related Multi-system Inflammatory Syndrome. Here, she recounts her story – and explains her fears that schools across England are reopening too early.

This is how my life went from pretty standard lockdown days to a Covid nightmare in just 48 hours.

Last Friday, my thirteen-year-old daughter did not want to get out of bed; nothing particularly unusual there. She complained of fatigue and a headache. By the evening she was running a temperature, and her symptoms now included abdominal pain and diarrhoea.

Concerned it could be appendicitis, I rang 111 and two hours later received a call back from a GP who assured me appendicitis was unlikely and that it sounded more gastrointestinal. Give her paracetamol and plenty of fluids, he told me.

By Saturday evening she had developed a red rash that covered her torso and extended to her face, chest, underarms, and palms. I rang the out-of-hours GP and queried whether it could be Multi-system Inflammatory Syndrome in Children (MIS-C)—confusingly also known as Paediatric Inflammatory Multi-System Syndrome Temporally associated with Sars-Cov-2 (PIMS-TS)—a severe and potentially life-threatening condition which triggers an overreaction of the immune system and can cause significant organ damage.

The GP had never heard of MIS-C but assured me that ‘Covid doesn’t affect kids’ and that rashes are generally consistent with viral infections involving a high temperature. The GP also said it was unlikely to be Covid-related, especially as she didn’t have a cough.

The following morning her temperature was 39.7, so I called an ambulance. On arrival at the Emergency Department at the Children’s Hospital she was admitted following an ECG. Numerous blood samples were taken for analysis and she was immediately started on intravenous antibiotics and fluids for possible sepsis and toxic shock but also underwent full investigation for MIS-C/PIMS-TS.

Then it began to affect her heart. She became ‘cardiovascularly unstable’ the day following admission with persistent tachycardia and hypotension. The initial impression was that the rash was due to toxic shock, so a second intravenous antibiotic was introduced with little effect. Her doctors became increasingly concerned. Her temperature was persistently high, her heart rate remained high, and her blood pressure low. Having ruled out toxic shock and sepsis, the Infectious Diseases team was brought in to assess her clinical presentation, which was in their opinion consistent with Multi-system Inflammatory Syndrome.

Shortly afterwards she was moved to the High Dependency Unit (HDU) and diagnosed with PIMS-TS (MIS-C). There she was enrolled into the University of Oxford’s ‘Recovery’ programme, a national clinical trial evaluating different treatment pathways for MIS-C. She received a steroid previously used to successfully to treat MIS-C patients, and thanks to the vigilance and expertise of NHS staff, showed significant improvement almost immediately.

As parents who are continually told that schools are safe and that Covid does not affect children, this is the sum of all fears.

‘Schools are Safe’

Last summer, the Department for Education (DfE) assured us that year bubbles would keep children safe and that whole year groups would be sent home to self-isolate in the event of a positive case. But by late September, Public Health England (PHE) were no longer advising schools. Advice on case management in schools was outsourced to call centres, where untrained, non-clinical staff were recruited to advise schools to send only the nearest ‘close contacts’ home using little more than a script. The intention was to keep schools open at all costs, and led directly to schools becoming, by the Prime Minister’s own admission, ‘vectors for transmission’.

The DfE’s latest plans to test close contacts in schools with lateral flow tests (LFTs) in place of self-isolation is even more concerning, considering that LFTs are notoriously inaccurate. In a study conducted on asymptomatic test subjects by the University of Liverpool last November, LFTs missed over half of positive cases with a high viral load when compared with Polymerase Chain Reaction tests (PCRs). There is undoubtedly a significant risk of them giving false reassurance to schools. In essence, tossing a coin would give about as much certainty.

The emergence of the more infectious B.1.1.7 strain—otherwise called the Kent strain, or ‘English variant’, as it’s known abroad—is another cause for concern. The English variant was not widely in circulation last year when English schools were last fully open, but it is now set to become the world’s dominant strain, and is significantly more transmissible than the original strain responsible for the UK’s second wave.

Paediatricians in Israel have reported a 23 percent increase in cases involving young children since the emergence of B.1.1.7. It’s tempting to attribute this increase to the success of the Israeli vaccination programme which has vaccinated almost all its adult population, but over 50,000 children tested positive in January, significantly higher than any other month. In Italy, where the population has received comparatively low vaccination doses, there has also been a marked increase in paediatric cases, which have now overtaken cases amongst the ageing population.

While Covid-19 in children presents in a milder clinical form, 30 percent of cases are asymptomatic, making children silent carriers of Covid-19. Throw B.1.1.7 into the mix and the false reassurance given by LFTs, and schools could once again become engines of transmission.

MIS-C

Although there is no evidence to suggest that MIS-C is triggered by any particular strain (it may even be that there are certain genetic hallmarks that predispose some children, making them more susceptible than others), what is clear is that more infectious strains have the potential for more prolific spread once restrictions are lifted. Professor Neil Ferguson of Imperial College London recently conceded that the Kent variant has ‘a higher propensity to infect children’.

Despite a relatively successful lockdown, cases are still four times higher than they were when schools started back in September. A recent modelling study from the London School of Hygiene and Tropical Medicine (LSHTM) suggests that the full reopening of schools now could push the R rate in England above 1.0 and stop the decline in new cases. The LSHTM estimated that the R rate would move to between 1.1-1.5, whereas partial reopening of schools would likely see the R rate increase to 0.9-1.2. An R rate greater than 1.0 signals that the virus spread is increasing rather than reducing.

Our understanding of children’s susceptibility to Covid-19 is still in its infancy. MIS-C is reportedly rare, but increasing in prevalence. This could be due to misdiagnosis as the symptoms are initially similar to gastroenteritis. Until we have the full picture and in the absence of a suitable vaccine for children, a more cautious approach to school reopening should be taken involving quarantine of close contacts, a blended-learning offer to minimise class sizes, adequate ventilation, and face masks to mitigate risk.

Perhaps the DfE could go as far as to allow parents some degree of control over their own family’s risk, by giving them the choice whether to send their children to school or continue online learning, instead of threatening with arbitrary fines intended to deal with truancy. This would help alleviate anxiety, as well as reducing class sizes.

My daughter was lucky that we caught it early. Aside from some very minor liver damage and fatigue, she escaped relatively unscathed. Already aware of Multi-inflammatory Syndrome, I knew the symptoms to look out for, and we were fortunate enough to live ten minutes from one of the best children’s hospitals in the country, where she was treated by a multi-disciplinary team involving Cardiology, Immunology and Infectious Diseases, and General Paediatrics, and a team of dedicated nurses who provided round-the-clock care.

I was sickened to learn that nurses, many of whom have lost colleagues and borne witness to immeasurable human suffering during this pandemic, were being insulted with the offer of a pitiful 1 percent pay increase by a government whose consistently poor decisions against scientific advice have put our communities and our children at risk.

Conditions such as MIS-C are only ‘rare’ when they affect other people. When they affect us personally, the low level of risk becomes irrelevant. MIS-C is becoming more common, with paediatricians sometimes seeing several cases at once in larger city hospitals – so perhaps the time has come to stop saying that ‘Covid doesn’t affect kids’ and that ‘schools are safe’. There are sufficient children hospitalised with MIS-C to testify that it does.

Any significant risk to our children is surely too much risk, however low. Our primary function as parents is to protect our children. If we don’t speak up for them and demand safer schools, who will?