The Story Of Our Little Warrior Neil Saiesh

Dr. Dinesh Babu, Chief of Anaesthesia, MGM Hospital, Chennai.

And from the moment he entered Neil’s story, everything began to change.

It was around 5:30 p.m. on 18th October 2024 when we called him.

We were not calling from a place of clarity.
We were calling from a place of collapse.

We had just been told that Neil’s entire small intestine was affected.
We had just been asked to think about taking him home… to pass away on the way.
Or to sign a paper… to stop care.

We were broken.

And then, somewhere in that darkness, a number was found. A call was made.

And on the other side… was a man who did not speak to us like it was the end

He just said, “Bring him here.”

That was it.

No hesitation.
No confusion.
No “let’s see.”
No “maybe.”

Just, bring him to Chennai.

And when he said those words, we did not think for even a second. We held on to them like life had just been spoken back into the room.

We immediately went to the NICU doctors and told them that we were planning to move the baby.

On 18th October, during surgery, the doctors had found that Neil’s entire small intestine was severely affected by infection. Only around 10–12 cm looked potentially healthy.

But they had not removed the infected bowel.

They had stitched him back… with the diseased intestine still inside.

When Dr. Dinesh took charge over the phone, everything became clear.

He spoke to the paediatrician.

Direct. Precise.

“Take him back to OT.”
“Remove the infected intestine.”
“Retain only the healthy 10–12 cm.”
“Create a stoma.”
“Prepare the baby for shifting.”

The paediatrician hesitated.

“This is risky… he’s too small… another surgery within 24 hours…”

“The baby could go into shock.”

And then came the sentence we will never forget.

“He is at risk with that intestine inside him as well. Do you have any other choice?”

That question changed everything.

Because it was true.

He was at risk if they operated.
He was at risk if they did not operate.

But only one of those risks gave him a chance to live.

In that moment, even the doctors knew.

This was not a random opinion.

This was Dr. Dinesh.

A man who understood what was at stake, and who understood it far better than anyone around us at that time.

He then explained the plan to us.

Neil would undergo surgery again the very next morning.

The infected intestine would be removed.

He would first be stabilised in Bangalore.

Only after:

• coming off ionotropes (blood pressure support)
• coming off oxygen support
• and becoming stable

…would he be shifted to Chennai.

For someone outside the medical world, these words meant nothing to us at first.

But we slowly learnt what they meant because Neil’s life depended on us understanding them.

Ionotropes are medicines that support blood pressure and circulation when the body is too sick to maintain them on its own.

So when we were told he had to come off ionotropes before transport, it meant his tiny body first had to prove it could sustain itself enough for a long transfer.

And suddenly…

The same doctors who had asked us to stop care…
were now concerned about shifting him.

Risky?

Riskier than let him dying there?

We had our answer.

That night, we went inside the NICU to speak to Neil.

“We are not giving up on you.”
“You are the strongest little boy”

“We are so proud of you”

“Hold on.”
“There is hope.”
“You are not going anywhere.”

He was still intubated from surgery. Machines were breathing for him.

And then…

he moved.

A small movement of his leg.

That tiny movement meant everything to us.

It felt like he was telling us, I am still here.

We held on to that sign.

Day 44 — 19th October 2024.

Morning. 5:30 a.m.

The surgeon arrived.

He explained the protocols.

He told us this was going to be a risky surgery.

He told us taking Neil back to the OT so quickly after the previous surgery could push his body into shock.

None of those words were easy to hear.

But we were no longer in a place where “easy” mattered.

We were not ready to sign a paper that said STOP CARE.

So, the consent forms for surgery came back.

Again.

And Neil went into the OT once more.

For the third time.

That sentence still shakes me.

Other parents count feeds, milestones, first smiles.

We were counting surgeries.

We waited.

Two hours.

Every surgery changes time.

The clock moves, but your body does not.

You stand still in fear, hope, exhaustion, prayer, everything at once.

When the surgeon came out, he showed us the intestine.

Infected.
Damaged.
Removed.

Only 10-15 cm remained.

Ten centimetres.

That number became our reality.

To understand that…

A newborn’s intestine is about 100–120 cm long.

Neil now had 10-15 cm.

Not a reduction.

A survival edge.

Neil was brought out of the OT and stabilised.

And almost immediately, the next steps began.

We called Dr. Dinesh.

Updated him.

“Give it 3–4 days.”
“Let him stabilise.”
“We will bring him.”

And just like that…

we moved from fear…

to planning.

We explored everything.

Air ambulance.
Train ambulance.
Road transport.

At the same time…

Neil was slowly stabilising.

Ionotropes reduced.
Oxygen support improved.
He was moving toward room air.

We kept updating Dr. Dinesh on every bit of progress.

Then he said something we did not expect.

“I will send our ambulance from here. Just bring the child in the ambulance.”

An 8 to 9 hour journey.

By road.

In an ambulance.

We paused.

But when Dr. Dinesh says something…

you don’t question.

You follow.

That was it.

And then he said.

“Marcus Benjamin from my team will come.”

At that time, it was just a name.

We did not know then how important this Marcus Benjamin would become in Neil’s journey.

We did not know then how much he would do for Neil, or how deeply grateful we would remain to him for the rest of our lives.

But some people enter your life so matter-of-factly, and then go on to leave a mark far beyond what words can repay.

Benjamin brother would become one of those people.

25th October 2024 — Day 49 of Neil’s life.

We got a call from Dr. Dinesh.

His team would be arriving in the night.

Neil would be taken to MGM Hospital, Chennai in their ambulance.

We were leaving Bangalore.

We didn’t know for how long.

Days. Months. Years.

We packed anyway.

Both Jerrin and I were working in Bangalore, and I had just begun my entrepreneurial journey.

Moving to Chennai for Neil’s treatment meant stepping away from everything we had built and figuring out how to hold things together.

But grace showed up in the form of people.

We were building our business with our closest friends, Jerrin with Mark, and I with Krishna.

And without a second thought, both of them stepped up and chose to hold the fort for us in Bangalore.

That kind of support…

you never forget.

At that time, another grace sat quietly in the background. My parents had moved to Chennai just two years earlier, and MGM Hospital was close to their home. In that moment, even that felt like a sign. Like God was somehow standing next to Neil.

The whole day passed in completing formalities at the hospital in Bangalore.

But emotionally, we were just waiting.

Waiting for the team to come.

Waiting to hand Neil over to the man who had told us he would get a chance at life.

That sentence had become gold for us.

As the day ended and the night approached, we heard from Dr. Dinesh’s team that they were on the way. Neil was being prepared for transport.

We kept walking around the NICU.
Waiting.
Watching.

Listening for footsteps.

At around 2:00 a.m.

Marcus Benjamin
Dr. Avinash
Sister Shruthi

And that moment stays with me very vividly.

Benjamin Anna walked in first.

Calm. Confident. Composed.

White attire. Gold chain.

And we thought…

this is someone important.

He was accompanied by Dr. Avinash and Sister Shruthi.

These names matter.

They are not side characters in this story.

These are people who would go on to take care of Neil over the next many months.

They became an essential part of his life and therefore of ours.

Some names deserve to be written with weight because of what they came to mean.

These names are among them.

They assessed Neil.

And then, quite unexpectedly, they decided to take a tea break before we started the transfer.

And strangely, that tea break comforted us.

Because they seemed cool.

We did not know whether anything was worrying or not.

We did not know what all they had assessed and understood.

But the fact that they were not visibly panicking helped us breathe.

Their calm steadied the room.

When they came back, the journey began to take shape.

Neil was brought out of the NICU in a crib, and we walked along with him.

We did not know what that journey would hold for us.

But for the first time in a long while, there was hope.

Dim, yes. Fragile, yes. But deeply real.

Outside the hospital, an ambulance was waiting.

We opened it expecting a full NICU transport set-up with some kind of incubator arrangement.

But that is not what we saw.

I looked puzzled.

Neil had just come out of major surgery about six days earlier.

He was tiny. Fragile. Recovering.

How were we going to travel all this way just like this?

And then Dr. Avinash said:

“Just keep him on your lap. He will find comfort.”

And in that instant, I realised something painful.

I had forgotten that I could comfort him.

That is what the NICU does to you.

It teaches you to fear your own warmth.

It makes you think your touch may hurt more than help.

For so long, I had been afraid that even my nearness could cause him pain or discomfort.

I had forgotten my warmth.

I sat inside the ambulance and gently settled him on my lap.

Carefully.

Slowly.

Protectively.

Making sure I would not cause him pain.

Dr. Avinash and Sister Shruthi sat opposite me, continuously monitoring Neil’s vitals throughout the journey.

Benjamin Anna would probably have come in the ambulance with us as well, but at mine and Jerrin’s request, because Jerrin wanted to come in the ambulance, he graciously allowed that and himself sat in the car going ahead of the ambulance.

That gesture stayed with us.

Kindness always stays.

We were set.

The journey began at around 3:00 a.m.

Our friends and family had come to send us off and help us with things before we left.

And then we started.

Ambulances always give us a strange feeling.

We are used to being the ones on the road who make way for them.

Sitting inside one, carrying your baby, praying that he safely crosses every kilometre ahead, is a completely different emotion.

The monitor beeped.
The ambulance moved.
I held Neil.

And he slept.

Like the sweetest, bravest, cutest little boy, he slept.

He seemed to enjoy the movement, as though the rocking of the ambulance was comforting him.

I had thought he might cry. But he slept.

Maybe a mother’s comfort is real.
Maybe I was experiencing it for the first time.
Maybe he felt safe.

I wanted to keep him safe like that forever.

His tiny hands moved.
His legs moved.
Each movement told me he was okay.

I kept looking at him, then at the monitor, then back at him again, checking whether his vitals were alright.

At around 5:00 a.m., the ambulance picked up speed.

The siren came on.

The speed increased.

And we were suddenly really moving.

I held Neil tighter.

And he seemed to enjoy even that.

Still sleeping.
Still resting.
Like he had not slept so deeply in a long time.

Around 8:30 a.m., we reached MGM Hospital, Chennai.

Straight to the PICU.

Everything was new.
The place was new.
The people were new.
We were clueless.

We had walked into a hospital solely on the strength of one call with Dr. Dinesh and the words he had spoken to us.

We stood outside the PICU while the staff settled Neil in, adjusted to all that he had on him, and hydrated him because he had been off fluids through the night and could not be fed.

Then we saw someone going inside the PICU.

He looked at us and said:

“Hello, Dr. Dinesh.”

That was the day we met Neil’s angel for the first time.

He walked swiftly into the PICU and to assess Neil.

That was Day 50 of Neil’s life.

Neil had finally met his Don Doctor Dinesh.

He came out about fifteen minutes later, and we were called into the counselling room.

Every word from that counselling session remains fresh in our memory.

He said, “I have seen the baby. We need to take it phase by phase.”

And then he laid out the plan.

Phase 1 — Stabilising the baby

Neil had gone through too much already.

The first need was to stabilise him.

His body needed support.

His vitals needed to hold.

Phase 2 — Securing a permanent line

He said Neil would need a permanent line called a Hickman catheter.

A Hickman catheter is a long-term central line placed in the chest, with the catheter going into a major vein close to the heart.

This is used when someone needs long-term access for nutrition, medicines, and fluids in a sterile and reliable way.

Neil needed this because of his TPN needs.

And this was another new world opening up before us.

In a person with a functioning gut, nutrition comes through food, digestion, and absorption in the intestine.

But in people with severe bowel loss, that system cannot do its job.

So Total Parenteral Nutrition takes over.

Nutrients are given directly into the bloodstream, bypassing the gut entirely. In simple words, the intestine’s work is being done artificially.

And then he said something that completely stunned us.

“Once the catheter is in place, we will send him home.”

Home?

Was that even possible?

We had a hundred questions.

How do we manage that line at home?
What sterile precautions are needed?
What do we need to learn?
Are we even ready for that?

But he wasn’t done.

Phase 3 — Home TPN and transplant listing

Neil would be managed on TPN at home and put on the list for a small bowel transplant.

Because he had lost such a large part of his bowel, he would need a transplant.

And for Neil, that meant waiting for a paediatric cadaver donor.

That sentence landed with a weight that is difficult to write.

For our baby to live, another baby would have to die.

He also told us that Dr. Anil Vaidya from Cleveland Clinic would be the primary surgeon for the transplant.

At that time, he was in the US and was preparing to come to India to set up intestinal rehabilitation.

Was the timing this precise for a reason?
Was this always a bigger picture we could not yet see?

We did not know.

We just listened.

Phase 4 — Post-transplant care

The six months after transplant would need extremely careful monitoring.

Since Neil was a small baby, this phase would need highly attentive and critical care.

And then Dr. Dinesh said something that stayed with us permanently.

“Mind you, through all these four phases, we are walking on a thin rope. We can fall this side or that side with anything. I want to be very clear about that. I will be upright honest and let you know when we are falling from the rope. You need to be prepared for everything.”

He said that and he left…

No false reassurance.

No empty comfort.

Just honesty.

And strangely, that honesty gave us strength.

Because for the first time, we were not being told to give up.

We were being told how to fight.

By then, words like TPN, home TPN, Hickman line, sterile care, cadaver, transplant had begun to sit inside our lives.

We had officially entered a medical world. We knew the next several months of our lives would be spent learning procedures, terminologies, risks, and possibilities we had never imagined.

AI officially became our medical research partner after that.

We stepped out of the PICU and let the staff do their work. They were cleaning Neil, preparing him, securing a line, hydrating him.

And then the full moral weight of what we had just heard hit us.

A paediatric cadaver meant that if Neil had to live, another baby had to pass away.

What kind of prayer do you even make for something like that?

What kind of moral dilemma is that?

How do you ask for your child’s life, knowing what it may require?

We stood there in Chennai, at the beginning of a journey we had never imagined, with fear, confusion, and hope all living inside us at once.

But one thing was very clear.

It was my Neiloo.
My strongest warrior.
The baby who had held on through surgeries, an ambulance ride, and impossible odds.

He was not going so soon.

We had officially begun our Chennai journey….

And Neil had found the man who would become far more than his doctor…

P.S. After his Dussehra outfit photo, I stopped taking pictures. Maybe it was fear, maybe it was just everything happening too quickly… but I couldn’t bring myself to capture more.

The next set of pictures we have of Neil are different.
They are our treasure.
Moments we hold on to… of him in his full glory.