The Story Of Our Little Warrior Neil Saiesh

We walked out of the neurosurgeon’s room carrying a fear we had never carried before….

I looked at Neil that morning.

He looked exactly like he always did.

He was not worried.

He was not scared.

He was not thinking about neurosurgeons, brain fluid, procedures or shunts.

He was simply my little boy.

As parents, Jerrin and I were carrying every fear imaginable.

Neil carried none.

Perhaps that was one of his greatest gifts.

He only lived the moment in front of him.

The neurosurgeon had explained everything patiently.

There was fluid accumulating inside Neil’s brain.

The infection had disrupted the normal pathway through which the fluid drained.

Pressure was building.

And pressure inside the brain was dangerous.

When the surgeon said that Neil needed to be taken to the OT for a Bur Hole procedure to remove the excess fluid, I don’t think I processed anything.

I remember asking him again.

“Does he really need this?”

I desperately wanted someone to tell me there was another way.

Another medicine.

Another option.

Anything that did not involve touching my baby’s head.

But Dr. Dinesh had told us it would be needed.

He believed the fluid pressure inside Neil’s brain could be one of the reasons behind the seizures. If the pressure was relieved and given a way to drain, Neil may recover.

That was the hope.

And hope had always made us say yes.

So we decided to go ahead.

What else do you do?

Most times, choices in Neil’s journey were never between yes and no.

They were between yes and yes.

10th March 2026.

The Bur Hole procedure.

Neil was taken into the OT in the afternoon.

For the first time, this OT felt unfamiliar.

No Benjamin Anna.

No Sakthiman.

No Dr. Dinesh.

This was a different team.

A different organ.

A different fear.

The neurosurgical team explained that they would drill a small hole in his skull, insert a drain and allow the excess fluid to come out. A tube would remain connected to allow the fluid to continue draining while they tested it.

No.

I was not ready.

I was not ready for any of this.

I sat there thinking about my child having to endure one more procedure. One more pain. One more wound.

And this time, it was his head.

I was angry.

Angry with fate.

Angry with everything around me.

Angry with God.

Because how much more was this child expected to go through?

Neil finished the procedure.

Like always, he came out of the OT victorious.

His head was covered.

We did not know exactly where they had cut.

We did not know where the tube was.

We only knew it would hurt.

The fluid was sent for testing.

The next step would depend on that result.

If the fluid was clear, a shunt would be planned.

So once again, I sat next to Neil.

Looking at him.

Crying quietly.

Feeling completely helpless.

We had to wait again.

12th March 2026.

The fluid results came.

The fluid was clear of infection.

That meant the next step was now confirmed.

Neil needed a shunt.

A VP Shunt is generally a Ventriculo-Peritoneal Shunt. It is a device placed beneath the skin that drains excess fluid from the brain into the abdominal cavity. The pressure can be monitored and adjusted from outside, depending on whether more or less fluid needs to drain.

But in Neil’s case, the abdomen was not an option.

His abdomen had already gone through multiple surgeries, infections, scars and complications. Placing the drain into the abdominal cavity carried risk.

So the next best option was considered.

A Ventriculo-Pleural Shunt.

The fluid would drain into the pleural cavity around the lungs.

Naturally, we were worried.

Neil had already gone through ARDS.

His lungs had already fought their own battle.

We asked the doctors about it.

They reassured us that this was draining into the lung cavity and that it would not cause much issue. They believed this was the safer route for Neil.

So we trusted them.

13th March 2026.

VP Shunt procedure.

Neil was taken to the OT again.

The shunt had to be placed.

It was expected to take about one-and-a-half hours.

We waited.

Not the wait I wanted.

Not the wait I deserved.

But waited.

Waited for my Neil’s head to be opened again.

Waited for a device to be placed inside him.

We were told this shunt would be needed lifelong.

Which meant Neil would carry a device within him for life.

And honestly, that never mattered to us.

None of these things mattered the most.

Because we could still have Neil with us.

Amidst all of us.

We could still hold him.

Feed him.

Love him.

Watch him grow.

That was all that ever mattered.

Neil came out with the shunt placed.

The doctor handed over the hair they had shaved from his head for the procedure.

My boy’s head had been opened and stitched.

I held that little hair like something sacred.

Because it was his.

We waited in the PICU for Neil to be extubated.

And then something happened that I will never forget.

For the first time in months, Neil cried.

A real cry.

Neil cried after such a long time since his meningitis.

And that cry meant the world to us.

Most parents would panic hearing their child cry after surgery.

I cried because he was crying.

Because to me, that cry meant something had returned.

Maybe it really had been the pressure.

Maybe the fluid had been hurting him.

Maybe his brain finally felt lighter.

Maybe our boy was slowly coming back.

Over the next 24 hours, the myoclonic movements reduced.

Whether it was truly because of the shunt or whether it was our hope seeing what it wanted to see, I don’t know.

But we started noticing signs of positivity.

And once again, hope entered the room.

17th March 2026.

Discharge day.

We came home with the VP shunt in place.

Neil was still struggling with pain.

Every time we lifted him, we could see it on his face.

Those tiny expressions told us it hurt.

But we had no choice.

We had to lift him.

To feed him.

To burp him.

To comfort him.

We had to make him go through pain again and again, even when we did not want to.

Many times I wondered if Neil silently blamed me.

If he wondered why Amma kept hurting him.

The truth was, I was helpless.

I was a mother trying to help my baby heal, while also causing him pain in the process.

If I could have taken every bit of that pain into my own body, I would have.

Without thinking twice.

Somehow, March felt cursed.

Everything was moving so fast that we did not even have time to process one thing before the next arrived.

We were asked to come for a follow-up on 20th March to check the shunt pressure and adjust it.

On 20th March, we went back to the hospital.

The pressure was increased, which meant the fluid outflow would be less.

The stitches were removed.

And we were sent back home.

That evening, something changed.

Neil was not eating.

He started taking very little food.

Very little water.

Feeding him became difficult.

We did not have a line anymore, so we had to manage with what we had.

We tried every method of feeding.

Every small trick.

Every patient attempt.

But he was not taking much.

21st March 2026.

Neil started vomiting.

His abdomen began to distend.

This was something we had not expected.

We became worried.

We thought maybe the shunt pressure adjustment had caused something.

We checked with Dr. Dinesh.

He told us to observe at home.

So we waited.

22nd March.

Neil vomited again.

Whatever little feed he was taking seemed to come out.

He had no energy.

He would just sulk.

He kept sleeping.

Something was off.

We called again.

Dr. Dinesh asked us to follow up with the neurosurgeon the next day.

23rd March 2026.

We went to the hospital thinking it was a follow-up with the neurosurgeon.

The neurosurgeon said that if the vomiting continued, he would consider reducing the shunt pressure so that fluid accumulation would reduce.

While we were discussing this, we called Dr. Dinesh.

He asked us to come to his floor for a check-up.

We went up and waited.

Dr. Dinesh came.

He saw Neil.

And immediately said Neil looked extremely dehydrated.

He needed a line.

We had reached the hospital around 3 p.m.

The plan was simple.

Hydrate him for a few hours.

Observe him.

And then discharge him.

At 5 p.m., preparations began for securing a line.

We were going to get a central line because Neil may need it in situations like this.

The search for a line started at 5 p.m.

6:00 p.m.

7:00  p.m.

8:00 p.m.

9:30 p.m.

No line.

No line could be secured.

Neil was extremely dehydrated.

His veins were not cooperating.

The doctors tried.

And tried.

And tried.

Every possible place.

Still no line.

Around 10 p.m., a small PICC line was found.

But the doctors were not happy.

Neil needed transfusion.

And that line was too small.

Five hours of trying.

Five hours of poking.

Without anaesthesia.

My baby was being poked in every possible place.

He was crying.

I could hear him from outside the room.

And I could do nothing.

I stood outside and cried with him.

I cannot explain the pain of that helplessness.

There are moments when even prayer leaves you.

That evening, I had no strength left to pray.

Honestly, I did not even know what to pray for anymore.

What more could I ask?

How many more times could I beg?

I just stood there crying.

Around 10 p.m., the doctors came out and decided they would try again the next morning. Until then, the small PICC line would help with hydration.

I went inside.

And I saw my Neil.

Swollen from the pokes.

Blood was oozing from every place they had tried.

For the first time, I felt like my baby was saying to me,

“Amma, I think I am done. Please release me from this pain.”…

He never spoke those words.

He did not have to.

I saw it in his eyes.

I saw tear drops fall from his eyes.

I knew at that moment that my Neil was in pain.

Immense pain.

All I wanted was to hug him. What else could i actually do? I was always helpless..

So I just hugged him…

I held him close.

Carefully.

Trying not to hurt him more.

I hugged him and put him to sleep.

Out of pain, he slept.

24th March 2026. – The dreadful day.

The fateful evening.

My routine from the hospital was always the same.

Wake up around 5 a.m.

Come home.

Take a bath.

Go back before the doctors came for rounds.

That morning, I did the same.

I came home, bathed quickly, and went back.

We waited for the doctors.

Neil woke up in the morning.

There was some distress, but we assumed it was because of the previous evening’s stress.

Dr. Dinesh and Dr. Anil came in.

The plan was to take Neil to the cath lab and try again for a line.

But then Neil cried.

He cried out loud from hunger.

When he cried in front of Dr. Dinesh and Dr. Anil, it was clear that he was ready to take food again.

So we started feeding him.

I fed him.

But then….

Around 12:30 p.m., Neil’s hands and legs started turning blue.

Something seemed off.

I asked the nurses.

They did not seem to know clearly.

So I fed Neil again.

I gave him some milk.

He drank it.

I kept him on my lap.

He slept for a little while.

But he was struggling.

The doctors decided they would try for a line again since he was turning blue.

They tried again.

No line.

Around 3 p.m., they found a jugular line.

Very small.

But they got it.

Neil was put on another blood transfusion.

I picked him up again and held him on my lap.

There was a strange sound when he breathed.

It was weird.

Not his usual breathing.

I asked about it.

I did not get an answer that settled me.

Somehow things escalated quickly…

Suddenly, around 5 p.m., Neil became unresponsive.

I placed him down and crying for something to be done to recover him..

I saw his eyeball not move.

Then I saw the monitor.

The heart rate was going down.

57

56

55

And It went down to 40.

They sent us out.

I knew.

The moment I stepped out, I knew.

I called Benjamin Anna immediately.

Not because I knew what he could do.

But because somewhere in my heart, he had always been one of Neil’s safest people. Somehow who had the power to resurrect him… Save him…

Jerrin and I were already crying.

I called my mother helplessly.

I told her to pray to every God possible.

I told her to come running.

I told her to save her Neiloo.

And then Jerrin’s phone rang.

It was Dr. Dinesh.

For eighteen months, there had been one unspoken belief in our lives.

As long as Dr. Dinesh was fighting for Neil, we believed there was hope.

No matter how bad the reports were.

No matter how frightening the scans looked.

No matter how impossible the situation seemed.

If Dr. Dinesh said we could fight, we fought.

If he said there was a way, we believed him.

Somewhere along this journey, he had become much more than Neil’s doctor.

He had become the person who quietly carried our hope whenever ours began to fail.

So when Jerrin’s phone rang and we saw his name, something inside me broke.

If the call had come from anyone else, maybe I would have searched for hope.

Maybe I would have questioned it.

Maybe I would have refused to believe it.

But if it came from Dr. Dinesh, then we knew.

I looked at Jerrin.

He answered.

I watched him listen.

I watched his face change.

I watched hope leave his eyes.

I don’t know the exact words that were said in that first second.

I only remember wanting to unhear whatever he was hearing.

I wanted to go back just a few minutes.

To when Neil was still inside that room.

To when the monitor was still beeping.

To when our fight was still alive.

Because as long as those words had not been spoken…

somewhere inside me, Neil was still fighting.

But once they were…

our fight was over.

Neil was gone….

All I could see was a lifeless body lying in front of me.

And all I could do was CRY!…

My Neil was gone….