"33 Days Are All That I Had With My Little Warrior"

Sometimes we have all these grand plans for our life, and then something completely unexpected happens. A greater power than we can contradict thwarts our intent and profoundly alters the entire course of our life. Read this mum’s heart-wrenching story of losing her son at just 33 days of age.

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Jasmine was expecting her third child when her husband’s company required him to move to Singapore. It was a tough choice for the family of four – comprising Jasmine, her husband and their two lovely daughters. After much deliberation, they arrived at the decision that the family should stay together. They made the big move, as a family.

They moved to Singapore in November 2015 and the baby was due the following February. 

Life seemed to be full of surprises and new beginnings. A new job posting, a new city, a new school for the girls and most importantly – a new addition to the family. And here’s the icing on the cake. Jasmine was expecting a boy. Their family was all but complete. Little did they know the biggest surprise of their lives was awaiting them.

Jasmine planned to deliver her baby in Johor Bahru (JB) and went across the causeway for her routine check-ups and scans. In February, she had her final check-up. She was dilated and her doctor had her admitted to deliver the baby that very day.

She had a smooth-sailing pregnancy followed by a fuss-free labour. At least, that’s how it seemed…

Jasmine’s delivery went fine. She had a smooth-sailing pregnancy followed by a fuss-free labour. Her little prince, Jeev was born and everything was in order. At least, that’s how it seemed. The nurses took him to the nursery and Jasmine decided to get some shut-eye after the day’s exhaustion.

But alas, just when everything seemed perfect, things took a dramatic turn. A cruel twist of fate was in store and the nightmare began the very next morning.

The paediatrician informed Jasmine and her husband that Jeev wasn’t looking too well. His oxygen saturation levels indicated a problem that was likely to be either an infection of some sort or an issue with his lungs, or heart. They immediately started Jeev on a dose of antibiotics in case of an infection.

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The medical team decided to transfer Jeev to a government hospital in JB, where there were more neonatal specialists. Upon performing an echocardiogram, the specialist diagnosed Jeev with complex Congenital Heart Defects (CHD). Although the news had cast a cloud of gloom over the new mother and her husband, they remained optimistic. The extent of the complication still remained at large.

Sadly, her baby only had ‘half a heart’…

Jasmine had to play the waiting game, as the paediatric cardiologist wasn’t around at that point in time. It felt like a ticking time bomb. Jasmine had her heart in her mouth. The cardiologist returned after two days and did a more thorough scan on Jeev.

The atmosphere was dismal. There was no silver lining. Jeev’s situation was extremely complex. Among other complications, he only had 2 instead of the usual 4, chambers in his heart. To put it at its worst, he had half a heart and the two chambers had to work overtime to compensate.

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The doctors had to break the difficult news. There was no silver lining in that cloud of despair. | Image source: Shutterstock

The prognosis was fatal. Even with intervention, his chances of surviving were less than 20%.

It was the worst thing Jasmine could have expected to hear. She had a tough time accepting the news and keeping a clear mind to discuss the available options. After endless calls between the doctors, a surgeon finally stepped forward to say he was willing to perform the surgery. That very moment, Jasmine and her husband gave the green light.

Jeev was transferred to KL and had his first open-heart surgery at just 8 days of being in this world. His initial prognosis was only 7 days to live, and at the time of surgery he was already a day past his ‘given time’. All the doctors had advised Jasmine and her husband that it was fine not to seek further treatment and to let nature take its course as even with surgery, the chances of Jeev recovering were less than 20%.

But tell me, which mother would allow her child to die? Which mother would give up her child’s life without a fight?

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Less than 20% is better than zero.

The surgery was performed and it was a success but it was not the end. He would have needed more operations. And with any surgery, the risks and complications are aplenty. Babies have close to no antibodies at that stage, and the risk of infection is high.

Jeev was in the ICU and throughout the time, he had a lot of ups and downs and a lot of alarms.

His chest was left open for a week to allow it to recover from the trauma of the surgery. Seeing a tiny baby strapped up to a multitude of machines and tubes was the most painful sight a mother could ever imagine having to see. We almost lost him many, many times.

Towards the third week, Jeev’s heart was getting slightly better. But unfortunately, when he was 33 days old, Jeev eventually lost his life to an infection. He had fought the good fight but a greater power decided that it was enough.

The days that followed left Jasmine in a concoction of anger, grief and bewilderment. Nothing seemed to make sense. It had been a normal and healthy pregnancy, the scans had not picked up a thing, then how and why had this happened? Her mind was riddled with questions.

During that difficult period, there were family members and friends who were truly supportive. But there were others who added insult to the injury with their insouciance or insensitivity. Just when she thought she had heard the worst, someone else would say something worse.

“It happened for a reason. At least be thankful for your two daughters. You should seek professional help.”

When coping with the loss of a baby, nothing anyone says can make it right. | Image source: Shutterstock

Jasmine felt angry with so many people and it seemed as if nothing that anyone said or did could ever make her feel right. She was maddened, infuriated, bitter and heartbroken all at once. Those were some of the darkest hours of her life. It was akin to falling into a deep, dark, abyss.

At some point, after performing all the last rights for Jeev, Jasmine felt that she had enough. She wanted to run away and hide from everyone and everything. They decided that it was time to go back to Singapore and start afresh. They didn’t want anyone to come back with them. Jasmine wanted time for herself and her family, just the four of them.

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It was indeed a rough time. The loss of Jeev, coupled with shuffling back and forth JB, KL and Singapore and getting the children adjusted and then readjusted to school, it was incredibly draining and difficult. But somehow, the adrenaline kept Jasmine and husband going, through it all. 

Coping with the loss of a child, one day at a time…

Moving on was a long and arduous process but little by little, one step at a time, Jasmine found herself getting better. She stopped searching for answers that she could not find and started accepting that maybe it was just not meant to be.

Her anger with those who had said the wrong things subsided and she was more forgiving. She didn’t hold it against them and attributed it to their lack of experience in handling such a situation.

To help her in the grieving process, the first thing that Jasmine did was to hire a helper. That at least took the chores out of her mind and gave her some time and space whenever she felt overwhelmed. It also meant taking better care of herself, as right from the time she had given birth, she had not even had any sort of confinement or recovery period.

Jasmine also took up yoga. Until today, Jasmine never fails to spend an hour of her time on that yoga mat. That is the time that she dedicates to Jeev, every single day.

Jasmine spent many hours reading up on grief and coping mechanisms. That led her to come across a support group – Child Bereavement Support Singapore (CBSS). Not quite knowing what to expect, Jasmine and her husband decided that they had nothing to lose by giving it a shot.

CBSS definitely helped them in the healing process. While everyone’s experience was different, they were tied together by the fact that they all shared the loss of a child. And only someone who has gone through it can truly understand what it feels like.

It felt like a safe haven to let their guard down and pour their hearts out. Being at a place where speaking of grief and remembering their lost children is normal, made them form and cherish special bonds with those around them.

The family came together and held each other’s hands through the grieving process. Jasmine found her marriage stronger than ever- as for the entire 33 days of Jeev’s life, she had been with her husband, 24/7. 

He was my companion and my journey-mate, my husband with whom I shared countless times just talking and sharing how I felt, or just crying. He had a lot of healing to do himself.

Jasmine’s husband held her hand through everything. | Image source: Shutterstock

There were also her two daughters without whom Jasmine would have lost herself. They never fail to comfort her when she cries. Her older daughter always includes Jeev in her drawings of their family and they often speak of him and celebrate his life, however brief it was.

They were the only reason for me to get out of bed and get things done around the house. They still needed fully functional parents and we were determined to be there for them.

Over time, the grieving process got easier. Of course, getting easier doesn’t mean that it got easy. There are days that things are better and there are days when things are incredibly hard.

The hardest part? Sometimes I look at his clothes and then I cry, that’s tough. I look at other babies who would have been around his age and that’s tough. The triggers, they vary so much. Even a song on the radio can bring me to tears. There’s no one thing that’s harder or easier than another.

It’s been over a year after Jeev’s passing and time has done some healing. In hindsight, Jasmine realises that there were a few things that helped her come to terms with losing Jeev.

First and foremost are the good memories that she has of him. During the waiting and shuffling between hospitals, there were some good days that involved just the three of them – Jasmine, her husband and Jeev.

They spent all their waking time with him and he was just a normal baby who would wake up, want milk, cry, and try to flutter his eyes open.  

The fact that God took Jeev away when he thought they were more ready to accept it made a world of difference in the recovery process. If not for those days with him, things would have been a lot harder to accept. It was somewhat like a closure for them.

God’s presence throughout the ordeal also made a significant difference. He was with them all the time. He made sure that Jasmine had a good pregnancy and smooth labour. Complications in labour would have made it difficult if not impossible for Jasmine to have been with Jeev when he needed her most.

God made sure that they went back to KL to have the support of family and friends through the rocky road and he also made sure that they had a home in Singapore to go back to when the time was right. He always made sure that they were taken care of.

I’m not a religious person but I think knowing or accepting that God has been looking after us helped in moving on and trying to pick up the pieces to go ahead.

Knowing that God took care of them helped Jasmine in her healing process. | Image source: Shutterstock

In addition, knowing that they had tried everything in their ability and that Jeev had fought as hard as he could, helped them to move on. They were left with no ‘what ifs’ to haunt them for the rest of their lives. 

Jasmine is well on the road to recovery but the ordeal has changed her. Jasmine used to plan, a lot. She always had her days and weeks planned but now if things don’t go according to plan, she no longer works herself into a frenzy. She still plans but not to the extent of getting upset about the weather ruining her plans to go to the beach or arriving 10 minutes late for a party. So what?

It’s just crazy. We plan our life, our weeks and our months in advance. And things like these happen and it’s a reality check – what are you planning so much for? Experiences like these really make you stop and take stock of what’s happening around you and the universe.

On a concluding note, Jasmine wants mums in a similar situation to know that such a journey is one that you have to take on your own. Each such journey is different and there should be absolutely no comparison.

There’s no timeline on grief. You can take as much time as you want and it’s ok to be selfish and to want to take care of yourself.  

Find support. Support is a cardinal part of the healing process. Find support in whoever you want but just make sure you have support.

Lastly, although it’s easier said than done, try to find positivity in whatever is left of your life. Always harbour on that hope to feel better and to want to get better.

As for Jeev, his name means life. While it seems ironic for his mortal life was but brief, Jeev is and will always be life for he lives in the heart’s of his family members and breathes life and meaning in all that surrounds them.

Jeev means life and he is alive in all that is beautiful. | Image source: Shutterstock

Every now and then, Jasmine will have a fleeting glimpse of his face. He is in the wind that caresses her face, in the pretty flowers that brighten her room, in the sun’s rays, and everywhere. He will forever remain a part of Jasmine’s heart.

*Names have been changed to protect the identity of the family in this story. 

ALSO READ: Losing a child – What it’s like and how to deal with the loss 

Written by

Nasreen Majid