MIS-C: A post-Covid-19 condition in children no one is talking about

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I just wanted to start this by qualifying that by no means is this an attempt to dramatise or undermine any individual’s personal experiences. Everybody has their own worries, reactions, and perceptions. My humble attempt to pen this is to singularly create awareness for what is an invisible killer—Multi-system Inflammatory syndrome in children (MIS-C), an incredibly serious condition directly related to Covid-19 and one that affects children post it.

As a wife of a doctor who has been in the thick of this pandemic, the word ‘Coronavirus’ has almost become part of normal parlance in our lives. Last year emotions gravitated from shock, confusion, depression, sense of horror to slowly moving into a quiet acceptance.

I have two children—a 16-year-old daughter and an 11-year-old son. As a family, we have been very vigilant with my daughter because she was scheduled to give her ICSE board exams, and we were excessively careful about not exposing her. As far as my 11-year old son was concerned, I was ready to relax the rules a bit. Playdates with two-three boys were allowed, a soccer game was okay, going down in the garden to cycle was permitted.

However, early in April, my daughter was feeling very unwell. We checked her temperature and realised she had a fever, so we give her paracetamol. She had already started feeling cold and shivery. At around 8 am, she had lost her sense of smell and taste. It was inevitable, the test was just a formality. We knew she had tested positive for Covid-19. We isolated her and quarantined ourselves. Luckily by the second or third day, she had started feeling better.

Eight to nine days after my daughter was isolated, my son woke us up saying he was feeling extremely uneasy. There was no fever or any other symptoms; just an uneasy feeling. We assumed he might have been exhausted and put him back to bed. Something was off the next morning but nothing really alarming or worrying. The fever started creeping by around 10 am and it continued to rise. Within the next hour, he had a fever bordering on 102-103 F. Our initial reaction was that he had also probably tested positive. The current viral strain was affecting entire families and this was probably no exception.

We were administering paracetamols round the clock, cold compressions, all-night monitoring, force-feeding, trying multiple ways of distraction but he continued to remain listless and completely depleted of any energy. The next day Sunday also passed in a similar fashion. Covid-19 fever has a cycle break after three or four days therefore we presumed that it would eventually start ebbing. Nevertheless, on Monday, we decided to do a battery of blood tests and the RT-PCR just so we rule out all possibilities.

The fever was raging. His reports showed that whilst his vitals were not normal, they were not abnormally high either. Do note, he tested negative for Covid-19 which was baffling because then we were maneuvering in a territory that needed a re-evaluation.

On Tuesday he woke up with no fever, but a huge swelling on his neck. We were pretty sure that since the fever cycle had broken, he was on the mend. However, he had bloodshot eyes and a rash all over his body. He was throwing up persistently and could not retain anything that he was consuming. He was then suspected of having a bad viral infection with a secondary bacterial infection. It was a relief to know that this was nothing to worry about, but he would just not wake up, engage or interact with anyone.

On Wednesday afternoon he developed severe diarrhoea and vomiting. We got one more blood report to determine his IGG levels. This was a precautionary blood report to rule out a few assumptions. The report was a shocker. His counts were 20 times higher than what was the acceptable range. That’s when everything took a volcanic turn. The doctors asked us to admit him to the hospital immediately or his condition would turn extremely serious.

He had developed MIS-C. If you look it up, Google describes it as rare but dangerous. For a layman like me, it’s a post-Covid-19 complication that affects children and their organs, but he never really had Covid-19. All reports were consistently showing him to be negative. However much to our utter shock, he had been affected by Covid-19 four weeks earlier. He was asymptomatic and we had no clue. Hence it went undetected and untreated. Children in certain cases slip into MIS-C three-four weeks after Covid-19. My son was well into it, his body developed a multi-organ inflammation that could affect his vital organs including the heart and the kidneys.

He was admitted to the hospital immediately. Since then he has been on Intravenous Immunoglobulin, a series of injections, blood thinners, steroids, IV drips, has had to do a 2D ECHO not to mention the complete emotional trauma that a child has gone through. The singular objective was to bring his vitals under control. It took three whole days to bring his counts down. A child of 11 can only take so much. We were told that if he would not have been admitted when we did, we would have ‘missed the boat’.

He’s home today although he's frail and weak with an almost non-existent immunity. We do have an army of healthcare professionals, all stalwarts in their field, to thank.

The attempt is to bring to light the havoc that MIS-C can create in children. Because much of the focus in the media is on adult-related symptoms of Covid-19, this is something that has gone completely unnoticed with no information or knowledge. MIS-C is a syndrome. There is very little research that has been conducted to ascertain the cause and risk factors associated with it. It is rare and with the correct medical attention, it can come under control. But since the knowledge is not widespread it is almost next to impossible to identify the symptoms. And by the time you do and start taking action, things could become serious. Whilst not all children have the same symptoms, below are the red flags:

• Fever that lasts for more than a day • Rash on the skin
• Vomiting
• Diarrhoea
• Feeling unusually drowsy—inability to stay awake
• Red eyes
• Enlarged lymph nodes
• Fast heartbeat
• Rapid breathing
• Redness or swelling of the lips, tongue, hands, and feet

My son had eight out of 10 symptoms.

I am no doctor and this is not intended to be a paper in a medical journal. I'm just a mother who got lucky and if knowledge and awareness can save even one child then I would like to pay it forward.

The writer is a Sr. Area Director of Marketing, South Asia at Marriott International

The thoughts and opinions shared here are of the author.