We thought my daughter had dengue. She ended up needing heart surgery

Recently, my family experienced the kind of plot twist in life that is every parent’s worst nightmare. 

You know how it goes: Everything is running smoothly, when suddenly, life throws a curveball at you and you think: “This was not meant to happen.”

For my wife and I, that moment occurred in May this year, when our daughter Qi Le was suddenly and unexpectedly diagnosed with a rare heart condition. 

At only 17, Qi Le, our oldest child, has her whole life ahead of her. And what a life it’s shaping up to be: She’s a bright polytechnic student studying engineering who’s also active in wushu and ballet. 

Up until May, she was fit, and as far as we knew, perfectly healthy. She had never shown any symptoms of a serious health problem. 

So, when she developed a fever in May, we didn’t think too much of it. Fevers happen. We took her to the clinic, got some medicine and expected her to be back in school within a few days. 

But four days later, the fever still had not broken, and she had started developing red rashes on her hands, arms and other parts of her body – which were very similar to dengue symptoms. 

The fever was also continuously spiking and dropping in a way that made us suspect she might have gotten dengue. So, we took her back to the clinic, and when her blood test came back with a low platelet count, we took her straight to hospital.

What followed were days of tests. To our surprise, the dengue test came back negative. So did several others. This only made things more unsettling. We knew something was wrong with our daughter; we just didn’t know what.

A WORD I HAD NEVER HEARD

A few days later, the doctors told us that Qi Le had endocarditis, a word that sounded completely alien to me at the time.

It turned out to be a bacterial infection that had settled on one of her heart valves. I went home that night and read everything I could find about this rare condition that affects three to 10 people per 100,000 each year. 

From what I read about it, I understood that there was a chance that Qi Le might need heart surgery, but it still came as a shock when the doctor gave us the news: He told us that she needed heart surgery to repair the valve, or, if that wasn’t possible, she would need a replacement valve.

That was the moment that hit me hardest. My heart sank and I was left stunned and in shock. I asked myself how my 17-year-old daughter, who had been dancing, practising wushu and going to school just days earlier, could suddenly need heart surgery? 

In a way, I had been in this situation before. My father had had heart bypass surgery years earlier. That experience meant that my initial shock passed quickly this time, and I steeled myself to focus on what we needed to happen next. 

But don’t mistake that for calm. If anything, it was harder to watch my child go through what I once saw my father go through. I just knew that from that moment on, I needed to keep moving instead of standing still.

I had to compartmentalise my emotions and logical thinking during that period. I knew that my emotions would not help me in this scenario, so I kept them aside. I used a logical mindset instead, which kept me focused on solutions and progress. 

The whole family did our best to keep calm. But as a father and a husband, I felt it was my responsibility not only to stay calm for our family but also to focus on what to do next.

Honestly, there were times when my emotions still got the better of me, but as much as possible I kept my feelings at bay to keep moving forward.

Honestly, there were times when my emotions still got the better of me, but as much as possible I kept my feelings at bay to keep moving forward.

I imagined the whole situation like playing a video game, going from one stage to the next, without knowing how many stages were left ahead of us. 

Initially, Qi Le was hospitalised for about 10 days while her diagnosis was determined.

After that, she was able to leave the hospital, and spent about a month as an outpatient receiving medication intravenously ahead of the heart surgery.

What I admire is my daughter's bravery through this period. I knew she felt scared, but she pretended to be strong and calm in front of us. 

She did occasionally question why this happened to her, but my wife and I had to put on an equally brave face to deliver positive thoughts and energy to her, despite being worried and scared ourselves.

REPAIR OR REPLACE? 

Before the operation, we had to decide: If Qi Le’s valve could not be repaired, we would need to choose between a mechanical replacement or a biological one. 

While a mechanical valve can last a lifetime, it requires blood-thinning medication for life, and that carries real implications for a 17-year-old, including whether or not she will one day be able to have a child of her own. A biological valve avoids that, but she may need to replace it later in life. 

We ended up choosing the biological valve.

We were thinking about the life ahead of her, not just the operation in front of us. We knew it might not be a permanent solution, but for us, it was the trade-off that made sense.

Our doctor reassured us and told us not to worry too much, that technology keeps advancing each year. If Qi Le were to require another replacement in the future, he said, there will likely be better options then than what exists today. 

That gave us something to hold on to.

OUR FAMILY’S LONGEST DAY

Qi Le was admitted to hospital on July 19, and the surgery happened on July 20. I was with her from 6am that morning, with the operation set to begin at 10am.

Sitting outside an operating theatre while your child is on a heart-lung machine, letting a machine do what her own heart and lungs could not, conjures up its own particular kind of turmoil.

My wife and I said it plainly to each other that day: We were preparing for the worst, not because we expected it, but because that is what your mind does to protect itself from the worst possible outcomes. 

Around 1pm, the doctor called to seek our approval on next steps, as there had been a development in the operating theatre: The repair wasn’t holding, and the team was proceeding with the replacement instead, in accordance with the plan we had agreed to in advance. 

I gave the go-ahead immediately. Because we had made these decisions in advance, I didn’t have to think through it in that moment of deep anxiety – but it didn’t mean I wasn’t afraid. Having to receive updates from the surgeon without being able to see my child was excruciating.

My wife and I finally got the full picture after 3pm that day, when the doctors came to explain what had been done, and to update us that the replacement had been successfully completed. Only then did it feel like we could breathe again.

GETTING BACK TO BEING 17 AGAIN

Qi Le came out of surgery that evening and made a remarkably quick recovery. A week in hospital, two more weeks of recovery at home, and she was back at school soon after. 

But we still had to cope with uncertainty for quite some time. For the first three months after surgery, she was on blood thinners to prevent clotting, so we had to watch her closely for any bruising or unusual bleeding. 

She had to ease herself back into her physical activities, starting with breathing exercises and light physiotherapy before engaging in anything more strenuous. Even now, we keep a close eye on her heart rate and blood pressure. 

After such a traumatic experience, I expected Qi Le would want to take things easy. But perhaps the most surprising thing about this whole experience was how quickly she wanted life to feel ordinary again. She was back in school within a few weeks of being discharged, and soon after that she was already hanging out with her friends and planning for her future. 

Her ability to bounce back is a source of optimism amid the lingering uncertainty still weighing on my mind. 

Honestly, there was a time when we didn’t know what the next day would bring. But today, seeing her be her own self, feels like a blessing that we will never stop being thankful for. 

WHAT STAYS WITH ME NOW

People ask if this difficult period has changed how I see the world. But in fact, it’s only reinforced my longstanding belief that illness doesn’t discriminate by age or how fit you look. It can happen to anyone. 

But it has changed Qi Le. Before this, like many young people, she did not have much reason to think about her health. 

Now she understands it is hers to look after, not something she thinks about only when someone like me, her father, reminds her to. 

If I could say one thing to another parent facing something like this, it would be this: You will have emotional fluctuations, and that’s normal. What matters is that you understand the situation clearly enough to act, and that you let people help you, because more people are ready to help than you’d expect.

For us, these people included the doctors and nurses from various healthcare institutes who took the time to explain Qi Le’s condition and the options available to her and looked after her attentively during her hospitalisation. 

The surgical team who took us through every step of the procedure to help ease our minds and my financial consultant who supported us with the administrative and financial aspect of this situation were also extremely helpful. 

And not forgetting my close friends and seniors whom I spoke to during this ordeal, who offered me support and verified my findings when I was researching endocarditis. 

Nobody plans for a call like the one we got. But something that we, as family, took away from this experience is to never take our health for granted.

Source: CNA/yy