The Story Of Our Little Warrior Neil Saiesh

Looking back now, Chennai never feels like a coincidence.

My parents had moved from Delhi to Chennai in 2023. At that time, it was just a decision. But in the larger picture, it felt like it had been chosen for Neil. The house was close to MGM Hospital. We did not have to think about relocation, logistics, or where we would stay. In the middle of everything that was falling apart, this one thing stood steady.

Jerrin said something that stayed with me.

On 18th October 2024, when Neil was written off in Bangalore, one voice brought us to Chennai. And that date, October 18, is the feast day of St. Luke, the patron saint of medical professionals. The church closest to our home in Chennai was St. Luke’s Church, Anna Nagar.

We held on to these things.

As signs.
As reassurance.
As quiet reminders that maybe we were not alone in this.

We were sitting outside the PICU, trying to understand what this journey would even look like, when we met the first set of doctors who would take care of Neil in Chennai – Dr. Kalaimaran, Dr. Monisha, Dr. Mano, and Dr. Yazhmozhi.

These names are not just names in passing.

They were the first people who received Neil into this new phase. They stabilised him, managed his lines, ensured his hydration, and carefully watched his vitals. There was a sense of structure here. Not just reacting to what was happening, but working with a system.

While Neil was being stabilised, something far more critical was being built in the background.

His survival plan.

That plan was TPN: Total Parenteral Nutrition.

But what we saw unfold was not just nutrition being given. It was precision. Calculation. Control.

Dr. Dinesh and Dr. Nivash Chandrasekharan kept coming in, again and again, assessing Neil. His weight. His electrolytes. His fluid balance. His outputs. Every parameter mattered.

Nothing was assumed.

Everything was measured.

And slowly, we began to understand, this was not support.

This was survival.

Gratitude note for Late Dr. Nivash Chandrasekharan – Anaesthesiologist

There are some people who don’t make noise when they enter your life, but quietly change everything.

Dr. Nivash was one of them.

He carried a calm that never shook. A clarity that didn’t need explanation. Paediatrics, for him, felt instinctive. Effortless.

But what stood out was his attention to detail.

The way he worked on Neil’s TPN plan was something we had never seen before. Every component was thought through, how much nutrition, how much fluid, what the body could tolerate that day, what needed to be adjusted the next. He didn’t just create a plan. He kept refining it, ensuring it worked for Neil, not just in theory, but in reality.

Looking back now, we realise that plan held Neil together.

It gave his body a chance to stabilise when nothing else could.

And maybe that is why his passing in January 2026 felt like a shock we were not prepared for.

Because to us, he was not just a doctor.

He was someone who quietly became part of Neil’s fight.

And what he did for Neil… will stay with us forever.

27th October 2024 — The Line That Would Sustain Him

Then came the next step.

The Hickman catheter.

When Dr. Dinesh said Neil was ready for a long-term line, we knew this was not just another procedure. This was a shift.

Neil no longer had the intestine required to absorb nutrition the way the body is designed to. Food, digestion, absorption, everything that sustains life naturally, was no longer possible for him.

So his body needed another way.

That way was TPN.

Nutrition delivered directly into the bloodstream.

And for that, the line had to be perfect.

Dr. Dinesh explained it to us.

The catheter would be placed on the right side of his chest. It would travel through his vein and sit close to his heart. This was not just a tube. This was direct access into his bloodstream. Direct access into life.

But along with that came something we were clearly told.

Infection would be our biggest enemy.

I remember Dr. Mano telling us, “In this entire journey, infection will be your only enemy. Everything else can be managed.”

At that time, we heard it.

Later, we lived it.

The procedure itself was considered routine.

But Neil was not routine.

He was tiny. Fragile. Recovering from multiple surgeries.

Which meant general anesthesia.

Which meant… OT again.

But this time, something inside us was calmer.

Because Dr. Dinesh was doing the procedure.

And that changed everything.

Benjamin  Anna was going to be there too.

By then, Benjamin brother had already become someone whose presence itself gave comfort. He didn’t over-explain. He didn’t dramatise. He just carried a confidence that made you feel things were under control.

We had even started calling Dr. Dinesh and Benjamin brother — Ranga and Amban.(From the movie Aavesham)

Because that’s what they felt like.

A force you trusted without question.

Neil went in.

We waited.

And when we were told the line was secured, it felt like we had crossed something important.

Because this line meant one thing.

Neil could now be sustained.

Neil came out of the OT.

Tired. Quiet.

But then he made sounds.

Small sounds.

And those sounds became our strength.

Yes, he was in pain.

But that boy had a way of making pain look small.

We talk about strength.

We were watching it.

31st October 2024 — Diwali

The world was celebrating.

Lights. Happiness. Noise.

And our light…

our son-shine…

was in the PICU.

We bought him a small “My First Diwali” onesie.

The nurses helped us dress him.

Helped us take pictures.

And while the world celebrated outside…

we had just one wish.

One day…

he should celebrate like every other child.

2nd November — When Surgery Returned Again

On 19^th October, 2024, when Neil had his 3^rd surgery, the major resection, Neil was sent to Chennai with a stomal opening.

The purpose was simple. The bile, a highly acidic digestive fluid, needed a way to exit. Without movement, it could damage the body.

The stoma was meant to protect him.

But when we reached MGM, we noticed something was wrong.

There was no output.

No output from the stoma meant the system was not working.

And we had seen this before. And it did not lead to anything good then.

We were told a paediatric surgeon would review him.

Even hearing the word “surgeon” had started to hurt.

That evening, Dr. Bala Mourugane came in. He was the paediatric consultant surgeon from the Mehta Hospital.

He spent close to an hour or may be more going through everything: The records, the X-rays, scans, Neil himself.

We sat outside, waiting, not knowing what would come next. When someone takes that long, we did not what to expect, the good or the bad? or by now our minds were tuned to thinking it would be bad..

When he called us in, he spoke slowly.

Clearly.

The stoma not functioning was a serious concern.

Especially if Neil had to be managed at home.

There were only two options.

Reconnect the intestine to the colon, allowing bile to pass naturally.

But this would cause severe excoriation, burning, rawness, pain around the anal region due to the acidity.

Or recreate the stoma by removing the block, which meant another external opening.

Either way…

there was no avoiding surgery.

And the reality hit us again.

Neil had just undergone a procedure.

Just three days back.

And here we were…

preparing him again.

But this time, something was different.

We had doctors who believed in him.

Who believed he could take it.

Dr. Dinesh said one thing.

“We need to do this.”

And from that moment…

we stopped questioning.

Dr. Dinesh says, we do. Period.

3rd November: The Surgery

Neil weighed around 1.7 kgs.

Tiny. Healing. Fragile.

And yet…

he went in again.

This was his fourth open surgery.

We stood outside the OT.

Waiting.

Six hours.

When the doctor came out, the first thing he said was:

“Neil is one strong boy. Honestly, when I went in, I was hopeless. But he gave me the strength. He held on.”

That was Neil.

Always holding on.

The bowel had been connected to the colon.

No stoma.

No external opening.

It gave us a small sense of relief.

Yes, there would be excoriation. Yes, there would be pain.

But in the larger picture…

this felt manageable.

For the first time…

we saw progress through surgery.

Neil came out.

Swollen. Tired.

Every anesthesia took a toll.

Every procedure left a mark.

I saw the big big stitches on his abdomen.

And something inside me broke.

How much can one tiny body take?

But even then…

we believed.

Somewhere…

God would not leave his side.

7th November – A Shift

We were told Neil would be moved to the ward.

Ward?

We had only known ICUs.

But by then, something had changed in us too.

We understood monitor beeps.
We observed medications.
We tracked everything.

Because we knew…

we were preparing for something bigger.

Taking him home.

The system Dr. Dinesh and his team built amazed us.

Everything was arranged.

Sterile environment.
IV stand.
Infusion pumps.
TPN supplies.
Monitoring setup.

All of it.

In a day.

Our home transformed.

My parents adapted instantly.

They bought an AC for Neil.
An inverter for Neil.

Everything became about Neil’s comfort.

And somehow…

everything fell into place.

9th November 2024 — Home

Discharge day.

We knew life was changing.

We were no longer just parents.

We were caregivers.

Dr. Dinesh explained everything.

His system was clear.

We would not touch the line.

His team would manage it.

But we had to learn.

Observe.

Be ready.

And then…

it was happening…

I lifted Neil.

Carefully.

Protecting his stitches.

For the first time…

he sat in our car.

That moment…

felt like everything.

We had forgotten firsts were possible.

Dr. Dinesh brought them back.

We reached home.

My mother stood there…

with an aarathi plate.

And then…

Neil entered our home.

For the first time since his birth.

And that moment…

felt like forever.