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I Lost My 10-Year-Old Son To Post COVID-19 Complications. This Is How I Remember Him

In 2022, Ian Zuhayr Johan became the eighth Multisystem Inflammatory Syndrome-Children (MIS-C) death in Malaysia.

Cover image via Johan Ishak (Provided to SAYS)

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Editor's Note: This submission has edited for clarity.

The demise of Ian Zuhayr Johan, my ten-year-old son who would have been twelve now, breaks my heart significantly

How I wish I can use the words "broke my heart" in that first sentence, but I cannot. It can never be in past tense.

In Islam, children who die before they come of age are considered anak syurga. The term translates to 'children of heaven', as God Almighty and His angels see them as pure souls, free of sin.

This story of heartbreak starts in March 2022 when Ian tested positive for COVID-19

He was only feverish for two days and didn't have a cough. Within a week, he had recovered and tested negative. However, in April, he had a fever with erratic temperature for three days, and was also purging and having stomach pain.

On 22 April 2022, he was admitted to Avisena Medical Centre and treated for dengue after some blood tests, as all his symptoms were pointing towards dengue. The next day, he started having breathing problems, so the doctors did an X-ray, which showed worrying signs in his lungs.

This is when he was suspected to have Multisystem Inflammatory Syndrome-Children (MIS-C), a new post-COVID disease that started in Malaysia in 2021.

Early in the morning on 24 April 2022, Ian was rushed in an ambulance to Selayang Hospital, the only hospital that treats MIS-C. By that time, his lungs were drowned with liquid, presumably from the drips that were part of his dengue treatment as well as from him constantly drinking water.

His heart weakened, causing cascading effects such as high heart rate, erratic blood pressure, and low oxygen saturation. All this caused his lungs to not function well, which led to water retention and internal bleeding in the lungs. His lung capacity was further constrained by his inflamed intestines.

A compilation of Ian's childhood photos with various family members.

Image via Johan Ishak (Provided to SAYS)

Drastic action had to be taken — Ian was put into a medically-induced coma so that MIS-C critical procedures could be carried out

Blood dialysis was done by inserting a tube into his heart via his neck, to suck out blood into a dialysis machine. This cleaned away bad antibodies that were attacking Ian's body since there was no more COVID virus for it to fight.

He did not respond well to dialysis, as various organs had already reached a severe stage. The doctors wanted to start a second procedure called plasma exchange, where incumbent plasma is replaced with donated plasma. However, Ian's vitals had already reached a stage where this procedure would harm him more if done.

So, they continued with the blood dialysis. The acid level in his body had also risen, and various methods were used to neutralise his pH reading.

Taken on 23 April 2022, this is the last photo of Ian alive.

Image via Johan Ishak (Provided to SAYS)

By noon on 25 April 2022, Ian's vital readings started to deteriorate

The doctors (six in total, including a radiologist) did everything they could think of based on their experience handling a total of 80 MIS-C cases in Malaysia, with seven fatalities.

By 1.11pm, Ian became the eighth MIS-C death in Malaysia.

Since Ian's death, I've embarked on a journey to live and coexist with the melancholy brought on by his passing

One method that I use to neutralise the sadness of Ian's demise is to keep on thinking about him by frequently looking at stuff associated to him.

For instance, I like to go to KLPAC Sentul, which is where Ian had his last outing with me and his brothers. I also constantly look at old photos (including my phone's wallpaper) and watch old videos, as well as drop by the old house where Ian grew up from the ages of two to ten.

Ian used to give me his drawings of Godzilla, and I can still vividly remember him saying, "Daddy, can you compile all my artwork please?"

Ian's last Hari Raya photograph with his siblings, Daniel and Emil.

Image via Johan Ishak (Provided to SAYS)

So, naturally, another method of thinking about Ian is to look through his drawings that I still keep.

One of the artworks I created for my solo show, Pandamonium, at KLPAC Sentul is a caricature of 'Panda-ian' that has found its place on my room wall where I can stare at it from my bed. I also have a mug with Ian's face on it on my table in my room.

The 'Panda-ian' artwork from my 'Pandamonium' solo show.

Image via Johan Ishak (Provided to SAYS)

I visit Ian's grave a lot too. The moment when I washed (mandi jenazah) his body before his burial is still fresh in my memory. Also fresh in my memory is the moment I observed Ian's vital medical equipment monitor (whatever it is called) in the hospital showing a declining trend until it became a straight line.

Ian's grave at the Islamic Burial Ground in Section 21 Shah Alam.

Image via Johan Ishak (Provided to SAYS)

I also sought and continue to seek divine intervention by praying for Ian's happiness in the afterlife with his late grandfather after each Muslim periodic daily prayer

I imagine them holding hands walking towards the horizon of an amberdawn sunrise. God must have a plan to have taken away the boy I produced and the man who produced me in a short span of three months (25 April 2022 and 21 July 2022 respectively).

I used to force myself to just cry alone at night before sleeping by remembering him. In the morning, forcing myself to remember Ian helps wake me up too. The best method is to talk to and hug Ian's younger brother, Emil, because Emil reminds me of Ian. Amazingly, Emil even smells like Ian.

Soon afterwards, around the time I was at Haj in Mekkah (where I can see many chubby Turkmenistan boys who look like Ian), I had become used to Ian's absence in my life, so much so that I had absorbed the sadness to become accustomed to it.

I even sat down with Datuk Izham Omar (a song composer) and Haze (a new singer) to compose a song on Ian for Haze to sing, titled Zuhayrku Yang Tidur.

Like the Malay saying, "alah bisa tegal biasa", or the Malay word "lali", the more you explore a particular matter, the stronger you are at it

This has helped me to continue to live, and in time, I hope to live like a normal person, where the sadness of the loss of family members will fade into sweet memories of them.

For this, I ought to say thank you to Ian for his request of "Daddy, can you compile all my artwork please?"

This story is a personal opinion of the writer and does not necessarily reflect the position of SAYS.

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