We write first in blood and tears, then go over in ink.

banner1Newspaper reports have been written about Serene Lee’s bravery and example as a heart patient, but to her three children – Joash, 16, Jasher, 11 and Jazaree, 4, she is simply the mother who tries her best to love them despite her ill health.

My 11-year-old daughter saved my life. I am not exaggerating. Without her quick thinking, I would not be sitting here, writing this now. I would be… just a plaque on a marble niche.

We were in a MRT train. The controller of my Left Ventricular Assist Device (LVAD) suddenly malfunctioned, and the mechanical pump that helped my heart pump blood to the rest of my body stopped. I rushed out of the train onto a platform, but within seconds, I keeled over. It happened so fast that I did not even know I was going to faint, much less take preventive action.

I was dead. Technically, I would have been dead for quite a while now, if ‘dead’ is defined as ‘having no heartbeat’.

My heart has been functioning at around 12 percent capacity for more than two years already. This was why I needed a LVAD. This mechanical device does the beating for my heart. If the LVAD stops, my heart stops. So there are many fail safes. For example, I have to carry a spare battery and a spare controller at all times.

However, a machine is still a machine. So the relatives of LVAD patients are given an emergency drill in case the LVAD malfunctions. It’s pointless to put the patient herself in charge of the emergency, as I exemplified the day that I fainted.

So there I was, sprawled on the train platform (on my face, I was told later), the piercing alarm on my LVAD machine adding to the confusion as strangers wondered why I was taking a sudden nap on the floor. My daughter knew the full implications of what had just happened. (1) Mummy is dead (2) If she acts fast, there is a chance Mummy can be revived (3) If she panicked or forgot the next step, Mummy would stay dead, permanently.

Tick, tick, tick.

Naturally, I did not see what happened next; what I am writing here are reports from other people. They told me that Jasher allowed herself the luxury of one scream. Then, hands trembling, she managed to dial the number of my coordinator – this is a certified nurse who had been assigned to my case and knows all the ins and outs of my LVAD machine.

Then, my brave and heroic girl asked for help from a stranger. I emphasised this because she is a shy girl and asking for help must have taken a lot of courage from her. She was also very wise. She knew she needed an adult’s help for the next step, because she was not strong enough to pluck out the main life line and to replace the controller. So she did not waste precious seconds trying to jumpstart my faulty machine by herself.

She thrust the phone into the hands of a calm passer-by who followed my coordinator’s verbal instructions step by step and changed my controller to the spare one in Jasher’s backpack. The alarm stopped beeping. The machine resumed its quiet humming, and the crisis was over.

All these happened within minutes; any longer and my brain would suffer from the lack of blood supply, etc, and I leave the rest to your imagination.

The list of people to thank after that is too long – the hero who restarted my LVAD; the kind bystanders who carried me and called the ambulance; the nice people who comforted my trembling girl.

But my real saviour was my little heroine, Jasher.

Ironically, out of my three children, Jasher is the one who has been most affected by my long battle with heart disease.

You must wonder why I had the nerve to have three children, considering I have a weak heart. It was for the simple reason that I was unaware of my sickness at that time.

My husband and I actually wanted four children. Wilkie and I are both the only child in our families. Because of that, we wanted to have lots of kids – four would be a good start. We had all their names picked out – Joash, Jasher, Jazaree and Jotham.

I had Joash and Jasher three years apart, both by natural childbirth, with no epidural. But I was young then – only 20 years old when Joash was born. I stopped work later to look after my children. We went everywhere by bus. I shopped for groceries with my two toddlers and walked home with bags slung all over the stroller. It was a hectic, but satisfying, period of my life as I watched my babies grow.

However, by the time I became pregnant with Jazaree, barely six years after giving birth to Jasher, I felt and behaved like an old woman. I was breathless and tired all the time. Moreover, I was nagged by a chronic cough that went on and on. The doctors thought it was bronchitis. They suggested an x-ray, but that would jeopardise the baby in my womb, so I refused.

I thought that everything would go back to normal once Jazaree was delivered. In truth, I did feel better. So much so that I decided to celebrate by taking a holiday in Switzerland, the land of the Alps. It was cold up in the mountains. Back in Singapore, I had a sudden attack of breathlessness. Subsequent xrays showed that I had an enlarged heart and there was water in my lungs.

The condition was called dilated cardiomyopathy, where the heart is enlarged and cannot pump blood efficiently. My mother had the same condition, but we were not aware that it was hereditary because we were told that her heart had been damaged by a viral infection.

My heart had been weak for years without me being aware of it. By the time I was diagnosed, it was only performing at 22 percent of its normal capacity! Within the next few months, its condition continued to deteriorate quickly. I could not climb stairs, I had no appetite and I was breathless all the time.

Most days, I could only lie weakly on the bed. My three young children still needed my care and love. Since I could not bring them out, play with them or tutor them, I could only invite them to lie around me on my double bed. They learned to amuse themselves quietly next to me with their mobile phone games and toys.

With each medical test, my heart functionality kept dropping. The specialist suggested, “Why don’t you have an LVAD implanted?”

“No way!” Picture the cartoons of a prisoner dragging a ball and chain everywhere he goes – that would be my life with LVAD. I would have a wire sticking out of my body permanently. I would have to wrap the insertion point and the wire with plastic sheets every time before I shower. Every night, I would have to plug into a power socket as if I was a human battery. But, in the end, I still had to have the machine.

My children were affected by my sickness in different ways. My eldest son, Joash, did not do well for his Primary School Leaving Examinations (PSLE) because I was very sick that year. When he learned about my condition, he said in that mature yet innocent, serious yet adorable manner of a boy about to become a man, “Mum, I will look after you.”

He was not helpful in the physical way, i.e. he did not do dishes or laundry, but he became more responsible for himself and his sisters. I could also see him visibly controlling his normally quick temper. While he curbed hasty words, at the same time, he also pushed himself to communicate more. As I was often warded in hospital, he took the initiative to telephone me, “What did the doctor say today? When will you be coming home?” I was extremely touched by his maturity.

When the LVAD helped me regain some strength and energy during his Secondary One year, he saw my improvement and his grades improved as well.

Jazaree, my baby, was the least traumatised because she was only one year old when I was diagnosed. She adapted more easily to my frequent trips to the hospital and my long absences than my older children. “Again?” she would ask plaintively when told that Mummy was in hospital.

If I stayed away too long, she would sometimes give me the cold treatment by refusing my phonecalls. But when told that “We’re going to visit Mummy tonight!” she would gobble down her dinner excitedly so that she could be ready in time for the hospital visit.

When I was fitted with the LVAD, the poor little dear got many conflicting messages. “Don’t touch Mummy’s battery!” “Don’t pull on her wires!”, “Don’t climb onto Mummy’s bed”. On the other hand, I was urging her, “Come to Mummy! Hug Mummy!”

She didn’t know what to do! She sat far away from me, her face stony. I tried to reassure her, “It’s okay to hug Mummy. You can hug me on the right side which has no wire.” Nevertheless, when she walked into my arms, she stood as stiff as a little pillar, afraid to move in case she hurt me.

But, as I mentioned, my middle daughter was the most affected. Perhaps it is because, as a girl, she was more emotionally vulnerable and yet felt that she had to project an air of calm so that she would not cause us additional worry. I did not know anything about the silent struggle taking place in her heart until her teacher gave me feedback.

“Your girl is flaring up at school; she quarrelled with her friends. It surprised us because Jasher is normally a quiet and well behaved girl.”

I started to make sense of her behaviour – why she did not want me to attend the Parent Teacher Meeting; why she said ‘Don’t come to my school’ and did not want her friends to see her mum. Jasher was ashamed; she could not accept that she was the only girl in school with such a different mum, an odd mum.

Don’t get me wrong. Jasher is not selfish or hurtful. On the contrary, she is the most helpful daughter any mother could have. From the start of my LVAD journey, my little girl – who had not even reached her teenagehood – made sure she learned how to care for me. She memorised all the parts of my machine. She monitored my schedule – “It’s time to change your dressing” and “Have you charged your batteries yet?”. She even charged my batteries for me. If she saw me sneaking forbidden food, she would remind me sternly, “No beancurd, remember?”

If I was warded in hospital, she would text me all day. “I am home from school”, “Dinner time”, “Bedtime”. Joash was puzzled by our constant need to update each other. Being a boy, he just did not get it.

When Wilkie felt that it was time our family took a holiday together after I adapted to the LVAD, Jasher and I put our heads together to solve the problem of showering in the hotel. At home, I knew where to put my machine and to seat myself so that my wound and machine stayed dry, but hotel bathrooms were a different story.

In the end, she volunteered to hold my wrapped up machine and keep the wire from twisting while I showered. That was my awesome daughter.

In 2014, I won a SingHealth Inspirational Patient & Caregiver Award because the hospital staff had seen my efforts to encourage other heart patients and participating actively in the support group for LVAD patients. My family was invited to the award ceremony. My children giggled when a video of our family was played at the event. Later, they were all called on stage when it was my turn to receive the award.

That occasion somehow made an impact on Jasher. My mother told me something Jasher wrote in her notebook at the end of that long year. “I used to be ashamed of myself and ashamed of Mummy. But I see now that, although Mummy is different, she inspires other people. I understand more now. I am so proud of Mummy.”

Some time in the future, I would probably have a heart transplant. My health is touch and go. The possibility of death is very real. I’ve discussed this with my children several times. “Joash, you must take care of your sisters”; “Jasher, study hard,” etc.

Jasher’s reply was, “Can you stop talking about this already? You are alive. You are doing well.”

My little girl is still awesome.


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