The Story Of Our Little Warrior Neil Saiesh

The next morning, we stood in the NICU waiting for the doctors.

Not just waiting.

Hoping.
Holding our breath.
Waiting for one sentence that would tell us we were not losing him.

The doctors came and spoke to us.

“His BP was wavering through the night… but it has settled with medications.”

That one word.

Settled.

We held on to it.

“He is doing better on ventilation.”

Better.

Another word we clung to.

They went on to explain.

The abdominal distention had reduced.
The drain had worked.
The collected fluid was coming out.

“For now… his intestines have a chance to heal.”

For now.

That is something the NICU teaches you very quickly.

Nothing is certain. Everything is for now.

He was still kept NPO – Nil Per Oral.

No feeds.

Nothing going into his stomach.

Because his intestines were too fragile to handle anything.

All his nutrition was being given through an IV line.

That is called TPN – Total Parenteral Nutrition.

Which means his body was being fed directly through his veins.

Proteins. Sugars. Fats. Everything.

Bypassing the gut completely.

Because his gut… could not function.

As a parent, you imagine feeding your child.

Holding them. Nursing them.

Not watching nutrients go into their bloodstream through tubes.

You can read more about TPN in this link here – https://my.clevelandclinic.org/health/treatments/22802-parenteral-nutrition

And then came Day 17.

“Let’s restart feeds.”

It felt like life was being handed back to us.

We were still struggling to find donor breast milk.

We finally found a provider… it felt like a blessing.

Because my own milk supply had still not caught up.

They started slow.

Tiny amounts.

Watching every reaction.

“He’s tolerating.” Meaning… his body was accepting it.

His NG tube was removed.

He was given palada feeds.

They spoke about latching.

For the first time…

we allowed ourselves to believe.

And then came a moment I had been waiting for since the day he was born.

People say Kangaroo Mother Care is everything for a newborn.

Skin to skin. Warmth. Bonding. Regulation. Safety.

But with Neil, I did not get that when he was born. There were too many tubes, too many lines, too many interventions between me and my baby.

28th September 2024.

“Let’s try Kangaroo Mothers’ Care.”

Carefully… with tubes still running…
I lifted him. And placed him on me.

His tiny head rested on my chest.

His tiny hands moved…

and then he slept.

Like he had found home.

For that moment…

there was no NICU.

No machines.

No fear.

Just me…and my baby.

About a week from then…things started feeling lighter.

He was feeding well.

He was passing stools.

His body was responding.

For the first time… things felt normal.

We even tried KFC (Kangaroo Fathers’ Care). Jerrin placed him on his chest and Neil and him slept to glory. It was a moment to cherish!

At that point, the doctors told us something we had been waiting to hear.

They said the NEC infection seemed to have settled.

That word… settled… felt like we had finally come out of the storm.

But they also added something we didn’t fully understand then.

“Now we need to watch for NEC sequelae.”

And then It was Dussehra.

We got him a tiny cute dandiya outfit. Dressed him up in the NICU.

And then the doctors said it. “Looks like Neil is going home soon.”

His lines were being reduced.

Fluids were being tapered.

They were just keeping access… in case medicines were needed.

We were elated.

We started preparing.

We thought this was it.

That these struggles…

were behind us.

But life…

has a way of reminding you…how fragile everything is.

Sequelae… a word we had never heard before.

We later understood what it meant.

Even when NEC infection settles, it doesn’t always leave the intestine the way it was before.
It can leave behind scars. Narrowed segments. Areas that don’t function normally.

And those after-effects… are called sequelae.

At that moment, it didn’t feel threatening.

It felt like a precaution.

Something to just “watch.”

We didn’t know then…

that we were not done with NEC.

Not yet.

Day 34

We walked into the NICU.

And something felt wrong.

You don’t need reports.

You don’t need doctors.

Your body knows.

His NG tube was back.

His IV line was reconnected.

TPN was running again.

The nurses wouldn’t look at us.

That silence…is something you can never ignore.

We found the duty doctor.

“He has been vomiting.”

“All feeds?”

“Yes. Everything.”

They even tried continuous feeds.

1 ml over 1 hour.

Even that… wasn’t staying.

And then came the words.

“Abdomen distention is back.” “Tight.” “Shiny.”

And in that moment… our fear went back to one place.

NEC.

“Is NEC back?”
That was the only question we could ask.

The doctors explained.

“It may not be active NEC again… but NEC can leave sequelae.”

They told us that sometimes after NEC, the intestine develops narrow segments or strictures.

Which means parts of the intestine become tight… restricted…and food cannot pass through normally.

That leads to…vomiting, distention.
and what we were now hearing again…

bowel obstruction.

But something inside us knew…

time was not on our side.

Because we had already seen how fast things could change.

And this didn’t feel like something that was going to settle quietly.

This time… we understood the seriousness.

They explained.

A bowel obstruction was suspected. Which means the intestine was not allowing anything to pass.

The intestine is supposed to move food forward. Step by step.

But when there is a blockage…

nothing moves.

Milk stays. Pressure builds. The abdomen swells. The baby vomits.

And inside…damage starts.

In a premature baby…

this can turn critical very quickly.

We stood there.

Emotionally drained.

And then came the word we feared.

“Surgery.”

I remember asking…

“On him?” “He’s just 2 kilos…”

The doctor looked at us and said…

“We don’t have a choice.”

They explained the procedure.

Laparotomy.

An open surgery.

They would cut open his abdomen. Go inside. Find the damaged parts of the intestine. And remove it.

Remove.

That word stayed.

His CRP (infection marker) had reached 75.

Normal is 0.5.

That meant infection was spreading fast. Time was clearly not on our side.

Day 35 – The day we sent our baby…for his first surgery.

Consent forms were placed in front of us.

You don’t read those forms.

You feel them.

Complications. Risks. DEATH.

And then… a blank space. For your signature.

No parent should ever have to sign that.

But we did. Because we had no choice.

They started preparing him and then they took him. Into the OT. The same OT where I had delivered him!

We sat outside. Five hours. Five hours of not knowing if your baby will come back.

At 6:30 p.m…

the surgeon came out.

“The last part of his small intestine… had perforated.”

Perforation means a hole had formed. Which means everything inside the intestine…leaks into the abdomen. Causing infection.

“They had to remove 10–15 cm.”

A newborn’s small intestine is only about 100–120 cm long. It has three parts. Duodenum. Jejunum. Ileum. Each part absorbs different nutrients.

And Neil had lost a small part of that system.

And then came the next word.

Stoma.

His intestine was brought out through his abdomen. An opening created on the skin.

His colon… also brought out separately.

Which meant… his digestive system was now disconnected.

Waste would pass into a bag outside his body. This is done to allow the inside to heal. Once the inside is healed, it would be reconnected back the way it is required to function.

But for us…it felt like everything inside him had been turned inside out.

He came out of surgery. He cried.

And that cry…felt like victory.

But the fight…was just beginning.

Days passed.

No stool.

No movement.

The stoma wasn’t working. “Intestines take time after surgery.”

We waited.

5 days.
6 days.
7 days.

Nothing.

He was crying. In pain. And Surgeon was called again!

And we were back…at the edge.

Day 43 – The day everything came back.

“Abdomen distention.”
“Obstruction.”

And in that moment… we didn’t hear new words. We heard something old.

Something we thought we had already crossed.

NEC.

The same word. The same fear. The same shadow that had once taken over our lives…

was standing in front of us again.

We had been told it had settled. We had been told we were now only dealing with sequelae.

After-effects.

Something manageable.

Something we could “watch.”

But this…this didn’t feel like sequelae anymore.

This felt like something had returned. Stronger. More unforgiving.

The doctors said what they had to say.

“The abdomen is distended again.”
“There is obstruction.”
“We cannot understand fully from outside.” “There is only one way to know.”

“We need to open him again.”

And just like that…

we were back at the same place.

Second surgery.

Within a week.

We didn’t ask questions this time.

Because we already knew the answers.

We signed. Again.

He was taken into the OT.

And when the surgeon came out…we didn’t need explanations. We saw it on his face. He was not able to make an eye contact with us.

Then came the words.

PAN NEC.

Not a part. Not a segment. The entire small intestine.

Gone. Destroyed by the same infection we thought had settled.

And in that moment…

everything the doctors had said earlier came back to us.

NEC doesn’t always end when it “settles.”

Sometimes it hides.

Sometimes it scars.

Sometimes it comes back in ways you don’t see coming.

And for Neil…

it had taken everything.

We didn’t ask about intestine.

We didn’t ask about survival rates.

We didn’t ask about medical terms.

We asked one thing. “Is Neil okay?”

And the answer…

was the one that broke us completely.

“He is okay right now… but not for long.”

And then came the words… no parent should ever hear and be given a choice about.

“Take him home… or Sign consent to stop care.”

We were being asked…

to let him go.

That was the choice we were being given.

Not how to save him.

How to let him go.

Our world shattered.

How do you decide something like that?

How do you make a choice between your baby dying in transit and your baby being withdrawn from care in a hospital bed?

It was my Neil.

I had seen him cry.
Seen him move.
Held him.
Felt him.
Loved him.

And now we were being asked to decide how he should die.

The doctors wrote their counselling notes and stepped away. A few others stayed back to console us. One of them said something I still cannot believe was said aloud.

It is okay. It is good that he goes now. At least you are not attached to him.

Not attached???

Neil grew inside me. He was a part of me. What did they mean not attached?

I was angry. I was shattered. I was crying. I was screaming. I was cursing myself, cursing fate, cursing whatever cruel hand had written this for us.

I called my parents and gave them the news. Devastated, they came to the NICU.

Since Neil had gone directly to the NICU after birth, no one in the family had really seen him properly.

My mother & father went in to see their grandson for the first time knowing they were being told he would not be alive much longer.

My mother came out furious.

She had seen him. She had seen how perfect he looked. She could not accept that a baby who looked so beautiful, so complete, so alive, could be declared beyond saving.

She raged out of the hospital saying she could not watch this and just leave it there. Somewhere inside that fury, she and my father did something none of us had thought of in that moment.

They searched.

They Googled.

My mother kept asking one question:

Isn’t there any possibility to save him?

Somewhere in that desperate search, she found a number online. My father immediately dialled, and someone answered. That person gave him the number of a doctor at MGM Hospital.

He called him.

Then he called me and said, speak to him. He can help.

When the whole world around you is dark, even the faintest light becomes direction.

And that is exactly what happened.

In that brief half an hour, my mother, my father, myself, my sister from Canada, my husband -all of us had called this Doctor to request him to save Neil somehow!

Enter Neil’s angel.

Neil’s favourite Don Doctor.

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

His words reached us like life being spoken back into a dead room.

“The baby will live. Bring him to Chennai.”

Those words meant everything! We wouldn’t forget.

Day 43 was not the end.

It was the day Neil’s fight truly began.

And Dr. Dinesh Babu would become far more than just a doctor in Neil’s fight.

He was the hope when hope had been taken away. He was the courage when we had none left. He was the hand that did not let go of Neil when the world had already stepped back and kept stepping back.

And that is where the next chapter will begin.

Next Chapter – Chennai – The hope that Neil found.