From GBS to Covid

On 29th May Aarav developed a fever of 100. I understandably freaked out and called his paediatrician who told me not to panic and give him a dose of crocin. By evening his fever had touched normal and didn't return.

11 days later Aarav lost sensation waist downwards and was admitted in the ICU. The doctors diagnosed his condition as GBS[1], a rare neurological syndrome where the body’s immune system attacks itself. Needless to say, we had never heard of it. He displayed all symptoms of it, except for a fever which was not considered typical.

For four days he was examined, probed and prodded with diagnostic tests to confirm the diagnosis of GBS. The first test was for Covid, without which no other tests could be done. The report came negative. This was on 11th June.

In the meantime, Aarav’s fever rose to 103.5 and then hovered at 100. The next day was a neurological test which was inconclusive. And the day after that was the MRI and CT Scan. The MRI showed a large hematoma which was compressing his spinal cord and causing the paralysis. GBS was ruled out. The diagnosis was immediate surgery with not a minute to waste. We were asked to think back and rack our brains about a possible fall he had recently which could have caused the spinal bleed. We couldn’t think of a single one which would be on the scale of Aarav falling from a first-floor balcony, which is how the doctors described the magnitude of the bleed.

On 13th evening another Covid test was done which also came negative.

On 14th early morning Aarav was wheeled into surgery which lasted for over four hours. After the operation, the neurosurgeon, known to be a doctor of few words, told us that the bleed was tremendous but they had managed to drain out the fluid which would then be sent for testing. In keeping with the procedure, Aarav was sedated and kept on the ventilator for 24 hours. The doctors were happy with the way the operation went.

On 15th afternoon Aarav was taken off the ventilator and kept in the ICU for monitoring. On 16th morning we were told that by evening we would be shifted to a room. I rushed home and packed a suitcase, putting Aarav’s favourite toys in, imagining his face when he saw his familiar things after so many days. After two hours I reached back to find the atmosphere in the ICU sombre and subdued. While I had been away, Aarav developed breathing complications and an x-ray showed his left lung had collapsed. The HOD paediatrician told us that he would have to be put back on the ventilator.

And there began a stretch of days which were a never-ending nightmare. Every possible test was done. Fluid cultures came back sterile, the biopsy of the spinal fluid was negative, blood markers were within normal parameters; those that were slightly off weren’t enough to warrant the seriousness of his condition. A daily x-ray showed that after his left lung partially recovered, the right one collapsed and a few days later vice versa happened. For close to three weeks Aarav was on the ventilator. His fever refused to abate despite antibiotics, steroids and every other medication possible. It would rise daily and hover between 99.5-100.5.

Every day the doctors would make their rounds, murmuring among themselves and telling us we needed to wait and watch. A day, then another, then some more, then a few more. Eventually Aarav was weaned off the sedation, leaving him awake and horribly uncomfortable with the tubes that had taken over his tiny body. The ventilator tube, a nasal feeding tube, a catheter to pass urine and several IV lines which pumped medicines into him hour after hour.

A third Covid test was done. It was negative.

There was no clear diagnosis.

In week four, one of the doctors asked us to get Aarav tested for the Covid antibodies. The test came positive. The earth shifted beneath our feet. We had vaguely suspected his one-day fever on 29th May could have been Covid but to have it confirmed was another matter altogether. The entire scenario changed and it became more and more apparent that his bleed was a fallout of Covid.

We returned home after 36 days in the hospital, with a child who couldn’t move his lower limbs, couldn’t sit up without support and wasn’t aware of when he passed urine and stool.

Today, almost four months after the fact, new research shows that more and more patients who have recovered from Covid show signs of clot formation.[2] [3] In addition, a lot of children are developing rare ailments, even in cases where they had no existing conditions.[4] In a heartrending article a mother describes how her children have been affected by Covid [5], causing a chill to run down the spine.

Our lives are now a saga of physiotherapy, exercises, diet and prayers. While Aarav is better than what he was 2 months ago, there is no denying the road ahead is long and fraught with uncertainty. The fear is absolute and continuous. If we didn’t spot the clot the first time around, what if it returns and we fail to spot it again? What if there are other complications that might arise as a consequence of Covid? What if… the questions don’t stop their relentless litany in my head.

I hear people say, Covid is just like the flu. Covid doesn’t affect children. How long can we stop living our lives, etc., etc. My response to such people is very simple. You can only live a life if you have one. And its time you stopped living in a blind bubble that somehow you are safe. You are not safe. Neither are your children. Neither are your parents. Age has nothing to do with it anymore. Nor does lifestyle. Nor does your per capita income. Covid is an invisible snake that will slither into your homes and strike you when you are at your most defenseless. And you won’t even realize it until one day you wake up and your world turns upside down.

So, at the risk of sounding preachy, wear the damn mask, sanitize everything possible and keep your children safe. Don’t tempt fate, unless you are willing to pay the price it asks for.

[1] https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barr%C3%A9-Syndrome-Fact-Sheet#:~:text=Guillain%2DBarr%C3%A9%20syndrome%20(GBS),the%20brain%20and%20spinal%20cord.

[2] https://hms.harvard.edu/news/covid-19-blood-clots

[3] https://news.weill.cornell.edu/news/2020/07/what-is-known-about-covid-19-and-abnormal-blood-clotting

[4] https://news.weill.cornell.edu/news/2020/07/what-is-known-about-covid-19-and-abnormal-blood-clotting

[5] https://www.verywellhealth.com/chronic-covid-19-children-long-term-symptoms-5080371