He was reciting something in English when I walked past the clinic room.
Haabinesh spoke confidently and dramatically, sounding more like he was rehearsing for a school presentation rather than attending a medical follow-up.
When he saw me, he smiled a wide, uncomplicated smile beneath the big round glasses that were slightly oversized for his face.
“Abang (Big brother),” he greeted me.
I had not seen Haabinesh for many years.
The very first time we cared for him, he was a mere 17-days-old baby.
Back then, he was a fragile newborn whose kidneys were already failing him.
Since those critical early days, his entire life had been meticulously charted through creatinine levels, medication adjustments, and careful, heavy conversations with his family about what might eventually come.
Today, Haabinesh is 10 years old.
And as we mark World Kidney Day this March (2026), his remarkable perspective offers a masterclass in how we, as a society, need to reframe our understanding of paediatric kidney disease.
Mature beyond his years
For many parents, a diagnosis of chronic kidney disease (CKD) in a child feels like the end of the world.
It is terrifying to hear that your child’s organs are not functioning as they should.
The natural instinct is to succumb to fear, to view the diagnosis as a devastating blow that will rob a child of their youth, their joy and their future.
However, Haabinesh has taught me that while the medical reality is undeniable, the emotional journey does not have to be one of despair.
Years ago, my colleague shared something profound he had said to her about his condition: “If this is what God prepared for me, I will go through it.”
At the time, such a statement sounded extraordinarily precocious.
It was the kind of maturity that forces adults to pause, leaving us unsure whether we should admire his profound understanding or feel unsettled by it.
During our recent consultation, he took it upon himself to explain his illness to me.
He did so calmly and systematically, with absolutely no doubt from his side, as though he were simply briefing a new member of his medical team.
Throughout the entire visit, he did not complain about his frustrations, his medications, the frequent hospital visits or the relentless blood tests.
Instead, he smiled from ear to ear, answering every question I asked directly and thoughtfully.
Then, he shared something that fundamentally shifted my perspective on patient resilience.
“At home,” he said, “we already prepared a room. Just in case. For the machine.”
He did not immediately use the clinical word “dialysis”.
Instead, he referred to it simply as “the cleaning process”.
When we gently asked him how he would feel if he needed to start dialysis soon, there was no tremor in his voice.
“I will be sad,” he said thoughtfully. “For a while. But after that, I’ll be okay.
“I want to get better. I want to become a scientist.”
He spoke not like a frightened child anticipating impending suffering, but rather like someone who was actively preparing for a challenge that had already been accounted for.
His bravery was not loud, nor was it defiant.
Instead, it was quiet, thoughtful and deliberate.
It was a perfect sequencing of emotion: his grief was acknowledged, but his resilience was assumed.
This is the exact narrative shift we desperately need when discussing childhood kidney diseases.
Vague symptoms
In Malaysia, and indeed, globally, public awareness campaigns surrounding kidney health often focus heavily on adults.
We link kidney failure to lifestyle factors such as long-standing diabetes, hypertension (high blood pressure) and obesity.
Because of this, paediatric kidney disease remains a silent, overshadowed reality.
Children generally do not develop kidney disease from poor lifestyle choices.
In paediatric cases, the root causes are frequently congenital (abnormalities in the development of the urinary tract and kidneys during pregnancy) or inherited genetic conditions.
What makes childhood kidney disease particularly insidious is its silence.
Unlike a broken bone or a severe asthma attack, failing kidneys rarely present with obvious, dramatic symptoms in the early stages.
Children might simply appear smaller than their peers, experiencing growth issues.
They might look unusually pale or complain of constant fatigue due to anaemia (low red blood cells resulting in less oxygen being delivered to the body).
Parents might notice unexplained puffiness around the eyes in the morning, or swollen ankles.
Sometimes, the only clue is a child who suddenly begins bedwetting again after years of being dry.
Because these signs are easily dismissed as growing pains or temporary ailments, diagnosis can unfortunately occur late.
This World Kidney Day, our message to parents is not to panic, but to practice vigilant, informed awareness.
Calm acceptance
As a medical professional, my instinct in the clinic that day was to protect this boy.
I wanted to reassure him and soften the future, to promise him that perhaps the need for dialysis would not arrive so soon.
Children should be allowed to fear imaginary monsters under the bed, not the very real progression of organ failure.
They should be the ones crying at injections, not the ones calmly discussing the nuances of renal replacement therapy.
I found myself wondering if it was even fair for him to be so composed.
Shouldn’t he have been frightened?
Yet, he had already accepted the possibility of his kidneys failing.
“I know my kidney can go bad,” he told me. “I know I might need the cleaning.”
His acceptance made me realise that I was the one feeling the profound weight of what lay ahead for him.
But as he stood before me, steady and clear, I sensed the roles in the room had shifted.
He seemed to be the one comforting me.
So many adults I see deny their illness, avoid discussing their prognosis or try to negotiate with fate.
Yet this young boy, had literally and metaphorically made room for uncertainty in his life.
He had a room waiting at home.
His family’s approach is indeed beautiful and within their capacity for navigating this chronic illness.
His younger brother, who has severe autism, required most of their mother’s attention.
He seemed entirely accustomed to stepping slightly aside, remaining quietly self-sufficient.
It highlighted the immense strain placed on the entire family unit when managing complex health needs.
Caring for a child with kidney disease is not just about the patient; it requires supporting the entire family ecosystem.
Reframing the situation
We prepare children for medical procedures, for the side effects of medications and for lab results.
We counsel families extensively on trajectories and probabilities.
But we must also foster their emotional literacy.
I felt a deep sadness for Haabinesh as no child should have to cultivate such emotional maturity so early in life, yet there it was within him, undeniable and fully intact.
How can we build this kind of encouraging environment for all children facing similar battles?
Here are some thoughts:
Knowledge is power.
Simple routine paediatric visits should include blood pressure checks (which are often overlooked in young children) and basic urine tests.
Catching abnormalities early drastically changes the future of a child’s health.
Dialysis and transplantation are not defeats; they are life-extending bridges.
By referring to dialysis as a “cleaning process”, this young boy stripped the intimidating medical jargon of its terror, turning it into a practical, manageable step toward his goal of becoming a scientist.
Parents and siblings carry an invisible weight.
We must build communities of support, be it psychological, financial or social, so that families can focus on living, rather than just surviving.
A child is more than their creatinine levels.
They have dreams, hobbies and futures.
We must nurture their ambitions alongside treating their physical ailments.
As Haabinesh finally waved goodbye to me, calling out, “Bye, Abang!”, I was struck by a profound realisation.
Strength does not always arrive in the grand, dramatic forms we expect.
Sometimes, true strength arrives in a small frame, wearing oversized glasses, calmly explaining dialysis as if it were simply a fascinating science experiment waiting to begin.
A diagnosis of childhood kidney disease is undoubtedly hard.
However, it does not mean the story is over; it just means the story has changed.
The medical team and his family had prepared a physical room for his kidneys.
But more importantly, this remarkable 10-year-old boy had already prepared the emotional space in his mind.
He had acknowledged his future grief, made room for the necessary treatments and still left plenty of space to dream of becoming a scientist.
The room waiting in his home is not a symbol of surrender; it is a symbol of preparation.
And perhaps that is what the theme of World Kidney Day 2026 implies: Kidney health for all.
Dr Naveen Nair Gangadaran is a paediatrician at Hospital Tuanku Ja’afar, Seremban, and council member of the Perinatal Society Malaysia and Malaysian Paediatric Association respectively. For more information, email starhealth@thestar.com.my. The information provided is for educational and communication purposes only, and should not be considered as medical advice. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this article. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.
