I Have Congenital Heart Disease—It's A Miracle I'm Still Alive

They called me the Miracle Baby.
PHOTO: COURTESY OF MARRA ZAMBRANO

I’m 23 years old, and I live for the hustle. I handle digital marketing for social media accounts, dabble in stocks, and organize events, plus I’m part-owner of an app that works as a platform for booking caregivers and private nurses.

A typical workday for me involves working at a coffee shop in Sta. Rosa, Laguna where I’m based. I spend a good part of the morning working with my other “flexi” friends; the rest of the day is spent running errands. I try to be active: At night after dinner, you can almost always find me at the gym; on weekend afternoons, I go for a jog in Nuvali. Weekends are also my time to go out with my family or have fun with friends at the local bar.

At the end of a good day, I like to spend time with myself to reflect and meditate. I write in my bullet journal about gratitude and think of what else I can achieve with the time I’ve got. Because I really don’t know how much time I’ve got. See, I have congenital heart disease.

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COURTESY OF MARRA ZAMBRANO

Miracle baby

They called me the “miracle baby.” My mother had been told that I wouldn’t last longer than nine months.

While I was born with no fetomaternal complications and had shown a good cry and color upon delivery, my family soon observed a bluish cast to my skin when I cried. The pediatrician they consulted noted a murmur in my heart, and he referred a pediatric cardiologist to handle my case.

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My heart was always described to me as “may baligtad, may butas, at may hindi gumagana.”

A 2D Echo showed that I had congenital heart disease (CHD): dextro-transposition of the great arteries (DTGA) with ventricular septal defect (VSD) and pulmonary valve atresia (PVA). That all sounds complicated, but to give you an idea, my heart was always described to me as “may baligtad, may butas, at may hindi gumagana.”

I was scheduled to have a corrective open-heart surgery when I turned two. But when the doctors began the operation, they discovered that my body would not be able to handle it. They performed the Blalock-Taussig shunt instead, a palliative procedure which helps relieve symptoms of CHD in young children until the heart defect can be repaired. It was costly; my mom, who was only 21 at the time and had just started working, had no idea where to get the money for it. Luckily, a friend of hers shouldered the costs.

Still, my family was advised that the shunt would not keep me in the clear forever. Until I got that open-heart surgery, the only thing keeping me alive would be the shunt.

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Growing up different

My parents made sure to tell me about my heart condition when I was young so that I would understand why they had to keep a close watch on me. But growing up, all I wanted was to run outside like the other kids. I was always the “saling-kitkit” in Chinese garter and ice ice water, and I felt left out.

COURTESY OF MARRA ZAMBRANO
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I only realized the gravity of my condition when I was seven. My neighbor, who was younger than me, died of a heart attack while we were swimming. I had known that we had the same condition, but I didn’t know which of us had it worse. It turned out that his condition was easier to treat, but he had not undergone surgery yet.

Since I was always exempted from PE growing up, I did not have the chance to be as active in sports as I wanted to be. When I had swimming for PE, I wanted to join and was eventually allowed to, but with the privilege of being excused any moment I had shortness of breath.

Besides putting me on maintenance drugs and bringing me in for regular checkups, my family gave me special attention and handled me with extra care. Bawal ako pagalitan masyado, bawal sumama loob ko, at bawal ako paiyakin. They all thought I would live a short life, even when I was just a kid.

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Juggling school and CHD

When I got older, I became more aware of all the things I had to give up because of my condition.

For instance, I used to like having my nails done, but my doctors strongly advised against it because they needed my nails clear to check for symptoms. I also found out that I can’t get a tattoo because the ink could cause an infection that could affect my heart.

COURTESY OF MARRA ZAMBRANO
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In high school, I began to feel conscious about my body, specifically the scar on my chest from my operation when I was two. I used to hate it and tried concealing it with makeup, but after doing research on surgical scars and seeing that some scars were worse than mine, I learned to appreciate my own.

I’ve always known that I could die any time, so I wanted my life to be meaningful, or at the very least, normal.

I’ve always known that I could die any time, so I wanted my life to be meaningful, or at the very least, normal. As a student at the De La Salle–College of St. Benilde, I grabbed every opportunity I could: I joined Model United Nations, ran for a position on the student council, took and passed the Professional Civil Service Exam months before graduation. And I was fine with being an average student, as long as I was able to balance school with spending time with my friends and family.

But as I sought my dream of a normal life, my health always brought me back down to earth. Throughout college, I would miss a lot of classes because I was in and out of the hospital for palpitations and difficulty breathing. Even on the hospital bed, I would be studying and catching up on schoolwork. That’s how I managed to still graduate on time, which gave me more time to enjoy a normal life after college—or so I thought.

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Gaining control

After graduating from college in 2016, I became even sicklier, and the hospital visits continued. Still, I decided to put my foot down and take control of my life. 

In the latter part of 2016, I started traveling. By 2017, I had launched my own makeup line and started studying stocks. Then, together with my mom and her friend, I developed an app for patients in need of caregivers and private nurses—an idea I had come up with after one of my many stays in the hospital.

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In 2018, I got admitted for almost three weeks due to a threatening infection that could have harmed my heart. But even after that infection, I convinced my doctor to let me work out. Months later, he finally gave me his approval, but with limitations: I can’t do too much cardio, and if I’m lifting weights, they have to be light ones.

My doctor told me that I must never get pregnant because it would be the end of me. It was a miracle that my heart was still working, and if my body had to keep another human being alive, my heart wouldn’t be able to handle it.

I never thought I’d live this long, so there were problems I didn’t expect I would have to deal with. For example, last year my doctor told me that I must never get pregnant because it would be the end of me. It was a miracle that my heart was still working, and if my body had to keep another human being alive, my heart wouldn’t be able to handle it. I also found out that I can’t take birth control pills because the pills would thicken my blood, which is bad for my heart.

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I’m 23 now and would like to start a family eventually, so I’ve been thinking about these things. But I know I’ll figure them out soon. That’s what I’d like to believe.

Twenty-three and thriving

I have a confession to make: I’ve been putting off having open-heart surgery even though it could be the thing that ultimately keeps me alive.

My doctor had recommended that I have the corrective surgery when I was 18 because the shunt was already on its last legs. I refused because I didn’t want to stop studying, so my doctor advised that I reconsider it for when I turned 21.

When I turned 21 and could finally have the corrective operation, I found out that it wouldn’t be just one operation; rather, it would be a series of operations over a span of years, and they would be very risky, with no guaranteed outcome. I sought a second opinion, and the new doctor said the same. But he added that I could just go on living my life as I was doing, if I didn’t want to put myself through risky operation after risky operation.

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I imagined entering the operating room as I was then, happy and relatively healthy, and never getting out of it alive. I loved my life too much to take that risk.

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For now, I’ve decided not to go through with the surgeries. When the time comes that I have no other choice but to take them, I’ll take them. But right now, I’m living my best life, after having spent most of it always in fear of sudden death.

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The fear of sudden death will always be there, but as long as I’m waking up each morning to a new day, it can still be the best day—the best life—ever.

I’ve always been concerned about my “timeline” and thought that I would no longer be around by the time I turned 18, but look at me now—23 years old, hustling, staying active, and still finding the energy to knock back a few drinks with friends! The fear of sudden death will always be there, but as long as I’m waking up each morning to a new day, it can still be the best day—the best life—ever.

COURTESY OF MARRA ZAMBRANO
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I’ve learned many things from living with congenital heart disease. I’ve learned to live my life with purpose and not be scared to explore. I’ve learned to embrace my battle scars. I’ve learned to love like there’s no tomorrow. I’ve learned to live in the moment and do things like it’s my last chance to do it. I’ve learned that if it’s not yet happening, it only means it’s not yet time.

Most importantly, I’ve learned that miracles do happen, every single day.

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