Medics have revealed how they brought a completely new disease, which has felled more than 100 children and killed at least one, under control.
There are now only a handful of cases in South London of the condition, about which very little is known other than it is somehow linked to Covid-19.
Paediatric hyper-inflammatory condition (PIMS) emerged in clusters in Southwark and Woolwich in April but spread across the region until a special unit had to be created for its young patients at Evelina London children’s hospital in Lambeth.
The hospital has been on the front line in fighting it. It was among the first in the world to report the condition – there were also outbreaks in New York and Italy – and it has treated the highest number of children in the UK.
Most of the Evelina patients have been from BAME backgrounds – and researchers are still trying to establish whether it is linked to poverty or just down to South London’s population profile. A 14-year-old boy with no underlying health problems died.
There are now only a handful of patients of cases of PIMS, which causes severe inflammation of the blood vessels – a serious side-effect is heart damage.
And there has been no second wave yet. Currently, there are fewer than a handful of children with PIMS-TS at Evelina London. But it can take 3-6 weeks for children to show symptoms after being exposed to Covid, so the upward curve of coronavirus could have an effect.
Seven of the first eight cases in April required a ventilator, all were from BAME communities and only two were positive for Covid-19.
The exact relationship between PIMS and Covid-19 is still being investigated. It could be a hyper-immune response in some children who were previously exposed to the Covid virus in their family. But it’s so new, there’s no hard data yet for the link.
Parent Ayan Dahir’s child caught PIM-TS – but she was a paediatric high dependency unit nurse so had an expert’s eye view.
She said: “I hadn’t seen many of these patients on the ward before my child got sick.
“We went to our local hospital, which thought it might be sepsis. I thought it might be viral – he had a really high temperature. I called my ward from the local hospital to say that I would not be able to work, and my colleague said, ‘make sure he’s not got that inflammatory thing’.
“He was really poorly and ended up having to go to paediatric intensive care (PICU) at Evelina where they tried to get his heart stabilised. It was really weird being a parent where I work, like an out-of-body experience. Staff on PICU were really nice and always made sure I knew what was happening. They were so calm, explaining everything. Knowing things kept me going.
“All of this has really given me insight into what families go through. Now I see exactly what parents see – I feel like I understand more.”
Staff at Evelina London children’s hospital jumped into action when they found youngsters were being struck down by the unknown disease – but it took its toll.
Medics from up to five departments switched to treating scores of patients.
Doctors and nurses already coping with the trauma of Covid-19 in adults had to cope with treating children with a condition they did not fully understand.
Dr Harriet Conniff, lead psychologist for staff support at Evelina London, said: “I have done staff support for many years but have experienced nothing like those few weeks – seeing highly-skilled, amazing staff working extraordinarily hard and yet frightened by this new unknown.”
Dr Miriam Fine-Goulden, paediatric intensive care (PICU) consultant, said: “The features of the condition were disarmingly similar to one another, yet didn’t fit exactly with anything we’d seen previously.
“Surely, we thought, this can’t be an entirely new disease. We didn’t even know what to call it; for a while on PICU we settled simply on ‘The Thing’.
“We knew it must be related to COVID-19 but we couldn’t establish a link – all the children we tested initially had a negative result. Later we found they were positive for antibodies, confirming our suspicion.
“Our team was the first to publish a case series describing the condition. We shared our experience internationally.
“We are used to being able to deliver bad news while offering a compassionate embrace. We couldn’t help but find the situation incredibly hard.”
Paediatric trainee Dr Felicity Montgomery said: “Six weeks into lockdown, many of us had already been through a whole spectrum of associated emotions: anxiety and stress, a sudden, new way of life and work with lots of unanswerable questions; frustration and sadness at the loss of our day-to-day coping mechanisms; guilt with paediatrics being quiet.
“Fatigue had set in. Reserves were low. In that first week [of PIMS], we went from low patient numbers, to a ward full of unwell patients from paediatric intensive care – an ever-evolving treatment protocol for a brand new disease from five departments.
“To say it was an unsettling time is probably an understatement. I noticed the slow, quiet arrival of anxiety. By the middle of our first week of PIMS-TS, I was having almost constant palpitations, and had cried every day.
“I, like many others, reached out for support from our clinical psychologists.
“One of my first tasks was to tell someone at work that I was anxious and stressed, in case I needed a breather during busy days.
“I learnt I was by no means alone in my feelings – this was an understandable response to a recognisably stressful time.
“This was also a time of camaraderie and learning I am proud to have been part of. We kept each other going. We adapted quickly.
“I was also able to see the effects of our decisions first-hand. We watched our patients getting better, and, even if not always simply or without hitch, going home.”
PIMS-TS (paediatric multi-system inflammatory syndrome) is a rare condition affecting children. It is
linked to coronavirus, but children may not test positive for the virus, and is treatable with early detection.
Symptoms can include:
Persistent fever (above 38.5C)
Vomiting and diarrhoea
Swollen hands and feet
Most children will get better by themselves. Concerned carers should call their GP or NHS 111 for advice, or 999 in an emergency.
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