I just wanted to start this by qualifying that by no means is this an attempt to dramatize or undermine any individual’s personal experiences. Everybody has their own worries, their own reactions and their own 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 COVID.
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. This year however started with hope! When I used to be alone with my thoughts, it used to cross my head ‘gosh thank god we got saved from this’ or ‘really how did we get so lucky’. And whilst my husband continued to cure afflicted patients with a steely resolve, I moved into a sort of normal way of living. I’m going to admit I almost thought people with excessive paranoia were being really ‘silly’!
Until it laid its foot on my doorstep! I have two children – a 16 year-old daughter and an 11 year old son studying in JB Petit High School and Bombay International school respectively. As a family we have been very vigilant with my daughter. Scheduled to give her ICSE board exams, we were excessively careful about not exposing her. Hence no going out, no touching parcels, no interacting with anyone. Her exams were due to commence in May and since the format was to physically appear for them, we took extra care. As far as my 11-year old son, a boy like most boys – hard to entirely confine, I was ready to relax the rules a bit. Play dates within 2-3 boys was ok, a soccer game was ok, going down in the garden to cycle was ok, playing with 2-3 of his close friends in the colony was ok. Today when I look back, I wonder were exams such a driving factor that I almost got draconian with one but with the other I was ready to let my guard down. Humans are strange, in the middle of a colossal crisis you start exhibiting vulnerability by focusing on the wrong things (but we’ll leave that for another discussion).
April 14th was just a normal day in our lives. Normally chaos begins at 9 am with everyone switching on their ‘windows to the world’ – their gadgets ready to start what clearly is the only real connection to anything outside. My daughter continued her day with her exams looming like an invisible cloud. My husband was as usual attending to a ton of very frantic patients since things in the country had begun spiraling out of control. My son was as busy with his school and I was as usual oscillating between work calls, kids and housework. We finished dinner and almost as a ritual since the lockdown started indulged in ‘Fam time’ which is always a potpourri of laughs, games, my son with his antics trying to make us laugh or my daughter discussing some ridiculous teenage stories. And that’s the way our day ended. Around 3am, my daughter comes into our room saying she was feeling very unwell. We checked her temperature and realized she had fever so we give her a 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. We isolated her and quarantined ourselves. Luckily by the second/third day she had started feeling better. Though I might add the cancellations of exams might have accelerated the exit pace of the symptoms.
At around 2 am on April 23rd (around 8-9 days later 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. He is a child who has an incredible abundance of energy and tends to use every ounce of it. Something was off the next day 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 fever bordering on 102-
103 F. Our initial reaction was that he had had also probably tested positive. The current viral strain was affecting entire families and this was probably no exception. On Saturday he continued with the high fever. 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 completed depleted of any energy. Sunday also passed in a similar fashion. COVID fever has a cycle break after 3-4 days so we presumed that it would eventually start ebbing. Nevertheless on Monday, we decided to do a battery of blood tests and the RTPCR just so we rule out all possibilities. The fever was continuing to rage. His reports showed that whilst his vitals were not normal, they were not abnormally high either and do note he tested negative for Covid. 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 blood shot eyes and a rash all over his body. He was throwing up persistently and could just 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. He continued to remain completely unresponsive. On Wednesday afternoon he developed severe diarrhea 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.
What was the Diagnosis – 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 complication that affects children and their organs. But really stunned us is he had never had COVID…or so we thought! All reports were consistently showing him to be negative. However much to our utter shock, he had been affected by COVID 4 weeks back. Completely asymptomatic. No symptoms at all, no signs, absolutely zero change physically or in behaviour. We had no clue and hence was undetected, unnoticed and untreated. Children in certain cases slip into MIS-C 3-4 weeks after COVID. 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 in 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 3 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’. And we shall not go to what that ‘boat’ would have been. As a mother, it is hard for me to comprehend let alone articulate.
He’s home today. Frail and weak with an almost non-existent immunity. But atleast he is HOME and he is SAFE. We do have an army of medical care stalwarts we can not only be eternally grateful to but to who we owe our life – Dr Mahesh Balsekar, Dr Soonu Udani, Dr Cyrus Contractor Dr Gaurav Porwal, Dr Vijaya Kowshik, If it hadn’t been for their sense of urgency and foresight, things would have gone horribly wrong. And not to mention the incredible nursing staff at SRCC hospital. The outpouring of prayers, support, love and warmth from colleagues, teachers, the school, friends and family is another story which I will leave for my personal connection with each and every one of them.
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, 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 its 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
• Diarrhea
• 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 8 out 10 symptoms
I am no doctor. And this is not intended to be a paper in a medical journal. Im just a mother who got lucky and if knowledge and awareness can save even one child then I will consider it a pay forward.
With lots of love
Khushnooma Kapadia