By the end of February 2026, life had found a rhythm again.
Neil’s days revolved around therapy.
Wake up.
Feed.
Therapy.
Come home.
Sleep.
Feed again.
Therapy again.
Sleep.
Repeat.
His bowel was working.
He was eating.
He was pooping.
The STEP surgery had given us something we had desperately prayed for – a functioning digestive system.
His weight gain was still painfully slow, but we had learnt to be patient with that battle. Short gut syndrome was never going to be a sprint. It was always going to be a marathon.
What worried us more were the seizures.
Or the movements.
Or whatever those movements actually were.
Even today, I struggle to understand them.
They simply refused to leave him.
Some days they were milder.
Some days they seemed more pronounced.
But they remained.
And that uncertainty stayed with us.
The neurologist had advised another EEG in the last week of February.
We went.
The results weren’t reassuring.
Neil’s brain waves continued to show abnormalities. There was persistent abnormal electrical activity.
The neurologist sat us down and spoke about something he had been observing for a while.
He told us that Neil was moving towards being a Cerebral Palsy child.
I remember hearing those words.
And strangely enough, they didn’t devastate me.
Perhaps because by then life had already rearranged our priorities.
Neil was MINE. Period.
Whether he walked independently or not.
Whether he spoke or not.
Whether he achieved milestones differently.
Whether he carried a diagnosis or not.
He was MINE.
And that was enough.
The last thing that mattered to me at that moment was the label attached to him.
The diagnosis wasn’t what scared us.
The seizures did.
Because despite medications, despite time, despite recovery from meningitis, they simply weren’t settling.
The neurologist suggested something new.
A steroid trial.
A two-week course followed by close monitoring.
If improvement was seen, the treatment could potentially be repeated.
To us, it sounded like hope.
One more possibility.
One more thing we could try for our boy.
After our consultation, we spoke to Dr. Dinesh and Dr. Anil about the steroid plan.
The neurologist wanted to begin steroid therapy in the hope that it would help control the seizures. But steroids came with a challenge of their own.
They would suppress Neil’s immune system.
And for a child with a central line, every episode of immunosuppression carried the risk of infection.
We discussed the pros and cons.
The risks.
The precautions.
The what-ifs.
And then, something unexpected happened.
Dr. Dinesh and Dr. Anil looked at each other and arrived at a decision.
Neil didn’t need the line anymore.
He was eating orally.
He was tolerating feeds.
He was maintaining himself without depending entirely on TPN.
The infection risk of keeping the line outweighed the benefits of having it.
The line could come out.
Just like that.
The decision was made.
And honestly, I don’t know whether either of them realised what that moment meant to us.
Because to them, it may have been a clinical decision.
To us, it felt like victory.
A massive victory.
For the first time since his birth…
Neil was going to be free.
No tubes.
No lines.
No catheters.
Nothing attached to his little body.
Just Neil.
I remember feeling a happiness I cannot adequately describe.
For eighteen months, every lift had required caution.
Every cuddle had required awareness.
Every movement came with a tube to protect, a line to secure, a dressing to check.
And suddenly all of that was gone.
I could simply pick him up.
Hold him close.
Carry him around.
Without fear.
Without checking anything first.
Without worrying about dislodging something.
It felt like we had won something.
As though Neil had finally defeated one more thing that life had thrown at him.
When we walked out that day, we carried that joy with us.
And when Dr. Anil described it as a watershed moment in Neil’s journey, we agreed completely.
Because it was.
For the first time since the day he was born, our little boy was living without a single tube or line attached to him.
At that moment, there was no fear.
No foreshadowing.
No shadow hanging over us.
There was only happiness.
Pure happiness.
And perhaps that is exactly how I want to remember that day.
Once the decision was made, Dr. Dinesh took Neil with him to the ward.
He removed the line himself.
A line that had become such a huge part of Neil’s journey.
A line that had delivered life-saving TPN.
A line that had supported him through some of the toughest phases of his battle.
A line that had also brought infections, procedures, dressings, worries and sleepless nights.
And then he brought Neil back to us.
Line-free.
For the first time in his life.
Even as I write these words, I struggle to explain what that moment felt like.
Because unless you have lived through months of lines, tubes, dressings and procedures, it is difficult to understand the weight of that moment.
To somebody else, it may have looked like a doctor removing a catheter.
To us, it felt like a medal.
A victory.
A milestone.
A moment we had fought eighteen months to reach.
And perhaps the people who understood that joy best were Dr. Dinesh and Dr. Anil.
Because they knew exactly what Neil had overcome to reach there.
They had seen every setback.
Every infection.
Every surgery.
Every emergency.
Every impossible conversation.
And now here stood the same little boy.
Eating.
Growing.
Going to therapy.
And no longer dependent on a line.
This victory belonged to them as much as it belonged to Neil.
I still remember Dr. Dinesh holding Neil and talking to him.
Not as a doctor.
As someone who genuinely believed in him.
He looked at Neil and said:
“Neil, nee va da. Ivanga ellam edhachum sollitte irupaanga. You prove them wrong.”
(“Neil, you come. These people will always keep saying something or the other is wrong with you. You just prove them wrong.”)
That was Dr. Dinesh.
He never saw Neil as a diagnosis.
He never saw statistics.
He never saw percentages.
He saw a fighter.
And somewhere deep inside, he genuinely believed Neil was meant to defy the odds.
Maybe that is why Neil loved him so much.
Maybe that is why we all did.
I remember coming home that day carrying a joy I cannot adequately put into words.
The first thing I did was place Neil on my mother’s lap.
And almost proudly announce:
“Neil doesn’t have any lines.”
For the first time.
No dressings.
No catheters.
No tubes.
Nothing.
Just Neil.
My mother smiled.
We smiled.
The whole family smiled.
And for a few moments, we allowed ourselves to celebrate.
I know I am spending many words describing what may seem like a small thing.
But it wasn’t small.
Not to us.
Not after everything we had lived through.
For eighteen months, every victory in Neil’s life had come with a tube attached to it somewhere.
This one didn’t.
And that is why that day remains etched in my memory.
Not because a line was removed.
But because for the first time since the day he was born, our little boy looked free.
March 3rd,2026 – Jerrin and I met the neurologist again.
The steroid prescription was ready.
This was our next attempt at helping Neil.
Our next attempt at understanding the seizures.
Our next attempt at giving his brain a chance.
The plan was simple.
We would begin with the smallest dose on 5th March 2026.
Gradually increase it after a few doses.
And monitor him closely.
Every movement.
Every vital.
Every behavioural change.
Anything unusual was to be reported immediately.
We prayed before giving the first dose.
Perhaps this was what we had been waiting for.
Perhaps this would finally help.
Perhaps this would be the thing that brought our boy back.
The first day went smoothly.
The second day went smoothly.
And for the first time in a long time, we allowed ourselves to believe things were moving in the right direction.
7th March 2026.
I had just finished a meeting and returned home.
The moment I looked at Neil, something felt different.
I couldn’t explain it.
Nothing dramatic.
Nothing obvious.
Just a feeling.
A mother’s instinct telling me something wasn’t right.
He seemed sleepier than usual.
Quieter.
Less active.
I connected him to the monitor.
And looked at the numbers.
His heart rate seemed lower than normal.
Anything below 80 always made us uncomfortable.
This time I watched it settle around 55.
I tried stimulating him.
When he sucked on the bottle, the number would improve slightly.
Then it would fall again.
I felt panic rising inside me.
I immediately called Dr. Dinesh.
He listened.
Asked a few questions.
And then said:
“Bring him to the hospital.”
No hesitation.
No waiting.
Just come.
We packed up and left.
Again.
Somewhere inside me, I was already praying that this would be a false alarm.
A hydration issue.
An electrolyte imbalance.
Something simple.
Something fixable.
Something ordinary.
By the time we reached the PICU, the monitoring had begun.
Blood tests were sent immediately.
Electrolytes.
Investigations.
Everything.
The doctors were watching him carefully.
Very carefully.
And then came the sentence that felt painfully familiar.
If the heart rate fell further, Neil would need to be intubated.
Intubated.
Again.
Just four days earlier we had celebrated the removal of his line.
Four days earlier we had celebrated freedom.
And now we were back in a PICU discussing lines, monitoring and intubation.
Sometimes I wonder if that is the part I struggled most to make peace with.
Not the hospital admissions themselves.
But how quickly hope could be interrupted.
How quickly victory could become uncertainty again.
I remember standing there looking at Neil.
Helpless.
Angry.
Heartbroken.
Asking the same question I had asked so many times before.
Why Neil?
Why again?
Hadn’t he done enough?
Hadn’t he suffered enough?
Hadn’t he fought enough?
I stood there praying.
Begging.
Negotiating.
Trying to make sense of something that no longer made sense.
And once again, we waited.
By 8th March 2026, things were moving so quickly that the days have blurred together in my memory.
What I do remember is the feeling.
Something wasn’t right.
The seizures were different.
More aggressive.
More intense than what we had become accustomed to seeing.
Coupled with the reduced heart rate, it was enough for the doctors to become concerned.
The neurologist decided we needed another MRI.
And just like that, we were back preparing Neil for yet another MRI.
I don’t know how many MRIs, scans and procedures we had already gone through by then.
I had stopped counting.
But somehow every time Neil disappeared behind those MRI doors, the fear felt exactly the same.
I watched him go in.
And I cried.
Because by then life felt like it was attacking us from every direction.
Every time we thought we had found stable ground, something beneath us shifted.
We waited anxiously for the results.
The report would only be available the next day.
So we waited.
And prayed.
Like we always did.
I sat beside Neil that night watching him sleep.
Watching the monitor.
Watching every movement.
Silently asking God for just one normal report.
Just one.
The next morning, the MRI results arrived.
And immediately something felt wrong.
The neurologist was called.
People were speaking in hushed tones.
Nobody was giving us answers.
Nobody was saying much at all.
And by then, we knew enough to recognise that silence.
Silence in a hospital is rarely reassuring.
The neurologist arrived.
He examined Neil.
And then asked us to come to the counselling room.
I remember feeling my stomach drop.
Because when a doctor says he wants a long conversation, it is rarely good news.
We sat down.
And he began explaining the MRI findings.
He spoke about Cerebral Palsy.
He spoke about the extent of the brain injury.
He spoke about developmental concerns.
But honestly?
That wasn’t what shook us.
Not anymore.
By then, we had already accepted that Neil’s journey might be different.
Whether he had Cerebral Palsy or not did not change who he was.
He was still our Neil.
He was still ours.
The diagnosis did not scare us.
The next sentence did.
The MRI showed signs suggesting active infection again.
Active infection.
In the brain.
Again.
I remember staring at him, trying to process what he had just said.
Again?
How?
Why?
Hadn’t we already fought this battle?
Hadn’t we already completed weeks of antibiotics?
Hadn’t Neil already endured enough?
The neurologist explained that another prolonged course of antibiotics might be necessary.
Possibly a month.
A month.
The words echoed in my head.
Another month.
Another infection.
Another battle.
And suddenly I felt lost.
Completely lost.
Because for the first time in a long time, I didn’t even understand what enemy we were fighting anymore.
The seizures?
The infection?
The brain injury?
The developmental delays?
Everything seemed tangled together.
And we couldn’t see where one problem ended and another began.
I remember looking at Jerrin.
And Jerrin looking at me.
Neither of us had answers.
Neither of us knew what to say.
We simply sat there.
Exhausted.
Confused.
And quietly wondering what fate still wanted from our little boy.
As we walked out of the counselling room carrying more questions than answers, a nurse stopped us.
“Dr. Dinesh has asked you to meet the neurosurgeon.”
A neurosurgeon.
I froze.
A surgeon.
A brain surgeon.
My mind immediately went somewhere I didn’t want it to go.
I wasn’t thinking about consultations.
I wasn’t thinking about opinions.
I was thinking about surgery.
About opening his head.
About yet another battle.
We walked into the consultation room carrying fear.
The surgeon opened Neil’s MRI scans in front of us.
He pointed to the images and calmly explained what he was seeing.
Fluid was accumulating inside Neil’s brain.
The infection had likely disrupted the normal pathways through which the fluid drained.
Pressure was building.
And pressure inside the brain was dangerous.
The fluid would need to be drained.
The fluid would need to be tested.
And depending on the results, Neil might require a VP Shunt.
A VP Shunt.
I heard those words.
And then I heard nothing else.
Because my mind had stopped listening.
All I could think was:
They need to drain fluid from his brain.
To drain the fluid, they needed access.
And access meant a hole.
A hole in my baby’s head.
No.
I had watched Neil survive bowel surgeries.
Central lines.
Ventilators.
Infections.
Meningitis.
Seizures.
But somehow this felt different.
This was his brain.
And I wasn’t ready.
I wasn’t ready to hear it.
I wasn’t ready to imagine it.
I wasn’t ready to accept it.
We walked out of that room carrying a fear we had never carried before.
I looked at Neil.
He looked back at us with the same innocence he always had.
Completely unaware of words like pressure, drainage and shunts.
Completely unaware of the conversations happening around him.
Completely unaware that yet another battle was waiting for him.
And honestly, if I could have taken his place that day, I would have.
In a heartbeat.
P.S: I don’t have many pictures of March and this phase… I may upload a few in the next chapter.. But March in the speed it went, it took away many things from us… And we have a very little memory of it preserved.
The Story Of Our Little Warrior Neil Saiesh 
Leave a comment