Uno had a lot of stomach aches for an eight year old. The complaint was an aberration in his otherwise positive countenance, which saw him each day climbing his school bus in glee, looking forward to another day of learning and playing. For a while, doctor visits didn’t provide any answers. Uno continued to go to school. And he continued to complain of tummy trouble.
But he was losing weight, little by little, and his smile was waning. His complexion was becoming more pallid by the day. And he was exhausted.
In 2018, after a battery of tests, Dubai-based Uno was finally diagnosed with primary sclerosing cholangitis, a disease of the bile ducts. “Bile ducts carry the digestive liquid bile from your liver to your small intestine. In primary sclerosing cholangitis, inflammation causes scars within the bile ducts. These scars make the ducts hard and narrow and gradually cause serious liver damage,” explains US-based Mayo Clinic.
The diagnosis came with perplexing forecasts – the doctors couldn’t tell if the disease was quick acting or slow or whether it would progress in a particular pattern. “It’s different for every individual,” explains Filipino expat and father of Uno, Christopher Inciong. “For my son’s case, it was very, very fast. It was only two years [from diagnosis] when we needed to do a transplant.”
In these two years, Uno continued going to school even as his tummy distended from an unwell liver. As the signs of his illness reflected on his body, his once-friends began to shun him. “His tummy was getting bigger, he was getting bigger but his bones were becoming weaker. He was experiencing bullying in the school bus. He was called a monster in school. It breaks my heart to recount this,” says Inciong.
Then came COVID-19 and turned the world funny; schools switched teaching models, travel came to a standstill and community support came from a distance. For Uno, staying at home meant staying sedentary for hours at a time. Slowly, his body began to suffer and he became wheelchair bound. It was in this state of affairs that the doctors suggested the family start planning a liver transplant.
First, the family had to conduct several tests for a match status. Both Christopher and mum, Christine, went in for checks at King’s College Hospital. Christine, it turned out, was a perfect match.
Next, they had to contend with paperwork and travel. She explains: “The challenge was because it was peak COVID-19. Most of the countries were locked down. We were planning to go to London for the operation and then they shut their airports.
“India, our other option, was not allowing any flights, not issuing medical visas. Plus, Uno was high risk for COVID-19,” says his mum.
Getting there
The Inciongs managed the paperwork after repeated visits to their consulate and the Indian consulate in UAE. Prime Hospital’s Dr Saista Amin, Paediatric Hepatologist, explains that her clinic helped with the documents and bloodwork. But having gotten the initial steps sorted, they now had to find a way to fly. “We had to go to Sharjah, queue in the line in the repatriation line and just explain our situation. We went... they accommodated us,” says Christopher. “Every single day, we would overcome a hurdle, we would go home and see our son – like a candle, just melting away.”
When they finally landed in India at 4am, the Inciongs found themselves being led to a shuttle that would deposit them in a quarantine facility for 14 days. “Strangers intervened and explained our situation to the police. We called our Chennai hospital and they explained. Finally, the police escorted us to the hospital, where we were isolated,” he explains.
The next two weeks were a lesson in patience. “While we waited, they did our blood work, re-checked all results to ensure my son and I were a match,” says Christine.
“The challenge in India was just the waiting. We couldn’t go outside. We had to adjust with the food. Although the Dr Rela Institute and Medical Centre was very, very accommodating – they tried to accommodate our requests to the point where I was giving Filipino recipes to them and they would cook it for us,” adds Christopher.
When the 14 days were up, another round of paperwork began, and this time the Inciongs needed to go to the Ministry of Health and Family Welfare to get the relevant approvals.
Finally, three weeks after they first journeyed abroad, Uno would get a part of his mother’s liver in a 16-hour operation. Then both mother and son would be wheeled into separate intensive care units (ICU).
“No one could go inside – if we wanted to chat, there was only one mobile phone inside the ICU and then the nurse would come to you to have a call. Uno was alone for a week with no parents to comfort him,” says Christine.
For Uno, there were periods where doctors were afraid his body was rejecting the liver; there was a COVID-19 scare; there was the emotional turmoil of recuperating in loneliness. And for his parents, there was the added guilt of separation from their three year old, who was in Dubai with his nanny.
Traumatic memories
Every day the family would connect on Zoom – the laughs would devolve into screams as the calls would end. “It got to the point where the mental health of my youngest and that of the nanny got affected,” says Christopher. “We would be having a chat and my son would be crying and my nanny didn’t know what to do. It was very, very torturous for us, because you see your son crying … it’s such a young age. He had never been away from his mother, and then suddenly she was gone for almost two months.”
But amid the storm there were some bright moments. “After the surgery you have to re-learn to walk and do exercises. There was a time the nurse from the children’s ICU was very, very kind and her friend was the nurse who was taking care of me. So they talked with each other … I would walk in the hallway, Uno would walk in the hallway too, so we were trying to walk with each other. But it had to be only for a few minutes,” laughs Christine. ”Seeing him walking, holding his hand – it was priceless.”
This sort of meeting was also rare. After about a week’s stint at the hospital, Christine moved to a hotel near the hospital. Most days, say the couple, are a blur; she would be in her room while he was at the hospital. “What kept me going was … I went back to work; remotely. I said, ‘I have to keep myself busy rather than being in bed and feeling tired and sad.’ So that helped,” she laughs.
The couple says her employer was extremely supportive, even helping financially when the funds were strained. In Christopher’s case, he admits, that COVID-19 resulted in a job loss, making finances yet another thing to worry about. “I was devastated, I felt helpless,” he says.
That year in September 2020, as COVID-19 numbers continued to rise around the world, the family headed home to Dubai. “There was still one last thing we had to do before we could meet our younger son,” laughs Christine. “We had to quarantine in a hotel for 10 days.”
The journey has been a roller coaster, says Christopher, but it’s ended in smiles. “Uno plays all the time. He smiles all the time,” he says.
“During the first few months after we returned, we saw our youngest having mental health problems. Like, when we’d go out to get groceries he’d be crying. Or if she’d be going to work, he would always ask, ‘Mummy are you coming back?’ But now, I think he has recovered.”
Today, Uno is 11. He is on immunosuppressants, which he’ll have to take for the rest of his life. “He can’t eat grapefruit,” adds Christine, as this will not interact well with his medicine. But he doesn’t have any more stomach aches.
His journey has opened up his appetite for new experiences and new foods. And for the family, it’s reinforced their faith in humanity. “We are very thankful that during all the challenge we got to see the goodness of everyone around us. Everyone just supported us,” says Christine.
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