THERE'S a certain amount of steeliness that lies beneath Grace Jerald's gentle personality. You can't see it at first. Her doe eyes, quietness and soft-spoken exterior throw you off at first. But make no mistake about her steely strength and determination — they're there, albeit barely discernible.
I've met her a few times in the past. Her quiet personality pushes her in the background most times. She's a familiar face, but there's nothing more I can recall of Grace, except that I know her and we're Facebook friends.
There must be more about Grace that I should know. But it eludes me. It also dawns on me that Grace had never spoken about her condition before. She's had congenital heart disease since infancy and has lived with a pacemaker for decades.
No one knows how many people with severe health ailments like Grace live what appear to be normal, nondescript lives, because such people are not in the habit of announcing themselves.
They're too busy juggling responsibilities, paying the bills, studying, raising families — all while weathering life-threatening issues that would quickly overwhelm almost anyone else.
I realised that while I "knew of" Grace, I didn't know her at all. I didn't know of her condition, her struggles and her determination to highlight a cause close to her "heart". I didn't know that she's more than just a familiar face who's content to fade in the background. She's no shrinking violet, this one.
"I want to help people and their families who are struggling with this disease," she tells me pointedly, before continuing: "There's a tremendous need to talk about congenital heart disease, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life."
Grace founded CHD Malaysia, a support group for patients and their families that is now part of the Malaysian Congenital Heart Foundation, a non-profit organisation to help those born with the disease.
"It's the No.1 birth defect in the world, but it doesn't get highlighted much in Malaysia," she concedes quietly.
Her image over our Zoom call serves up some dorm-lounge pandemic realness: mussed-up hair, eyeglasses and plain tee-shirt. And she frequently lets out loud, un-self-conscious laughs as she recounts some of the most harrowing moments of her life.
She speaks of her disease with the detachment of someone from the outside looking in. Yes, she has it. But her story doesn't have any trace of a sentimental arch in it. No big reveal. No sob stories. Her large eyes stare unblinkingly at me for a moment before she remarks simply: "I've had this disease since I was a baby." It's her "normal" and there's nothing revelatory about that.
Grace is so invested in preserving a sense of normalcy that she swallows, in most moments, the strange side effects of having been in and out of hospitals for two-thirds of her life.
"Can you write about congenital heart disease?" she'd asked me not too long ago. "We have World Heart Day coming up on Sept 29 and I was just wondering if you would be interested in doing an article about those born with congenital heart defects and have lived with a heart condition their whole lives."
I hemmed and hawed over it, and didn't get back to her for a while. Sept 29 came and went. But Grace was relentless. She had a story to tell, so the WhatsApp messages kept coming in. "What do you think? Will you write it?" she asked again, adding: "I'm willing to tell my story."
How could I say no? Her earnestness won me over. She wanted to highlight the cause, but she insists that she's not the heroine of the story she's about to tell. "My parents, for example, sacrifice so much to ensure I lead as close to a normal life as possible."
DREADED DIAGNOSIS
"You have a healthy baby girl!" her relieved parents were told. They were ecstatic. Her mother had just gone through a difficult caesarean section, and had to spend a few more nights at the hospital to recuperate. Grace, on the other hand, was sent home after having been given the all-clear.
Just three weeks later, her mother discovered that there was something inherently wrong with her baby girl. The former had been discharged and was under confinement at her mother's place in Nilai.
Grace wasn't responding like any other normal baby. She refused milk and cried incessantly. "I had an older brother and based on her experience with my sibling, my mother sensed that there was something different about me," recounts Grace.
Her worried mother brought her to a clinic, and was initially referred to University Hospital for further checks. "I can't imagine how my mother would've felt. Instead of being in confinement and enjoying the thrill of being a mother for the second time, she found herself cradling her baby and making that long drive to University Hospital in Petaling Jaya," she recalls softly.
The hospital couldn't help her either. Back then, there wasn't a cardiology unit at the hospital. "This was more than three decades ago. So, they had to bring me over to Hospital Kuala Lumpur," says Grace. There, the diagnosis was grim. Grace had congenital heart disease. Her parents were devastated.
Here was a diagnosis that upended their dreams and hopes for their baby girl. What was congenital heart disease? They didn't know. "Back then, they couldn't go on to a search engine and find out about the disease. They had to rely 100 per cent on doctors and that was frightening," shares the 31-year-old, shaking her head.
It was unthinkable that babies can have heart issues, but it's not entirely rare, as Grace tells me.
According to the Health Ministry, about one in every 100 newborns in Malaysia suffer from congenital heart disease or congenital heart defects. This means that about 5,000 babies are born with this condition, based on the 500,000 births recorded every year.
Yet, her parents were blindsided by the diagnosis and felt very much alone. "They've never met any other parent who had kids with this condition before," explains Grace. "They were hearing this for the first time from a doctor, and it concerned their daughter."
From the moment they heard the words "Your child has a heart defect", they were thrust into a world they weren't expecting.
Her mother, adds Grace, was a teacher who taught children with special needs. "I think her experience and motherly instincts saved my life," she insists.
In the hospital where she was born, Grace appeared completely healthy and normal because of an extra vessel that newborns have to help blood flow in utero.
But that vessel closes shortly after birth, sometimes revealing hidden heart problems only after parents bring their babies home. Depending on the heart defect, the onset of symptoms can be sudden.
Many cases are detected in prenatal ultrasounds or routine newborn exams. But just as many babies also leave hospitals each year with undetected critical congenital heart defects. Typically, these babies turn blue and struggle to breathe within the first few weeks of life.
They're taken to hospitals, often in poor condition, making it harder to operate on them. By then, they may have suffered significant damage to the heart or brain. Researchers estimate that dozens of babies die each year because of undiagnosed heart problems.
"If your child has a congenital heart defect, it means that your child was born with a problem in the structure of his or her heart," explains Grace, adding: "Some congenital heart defects in children are simple and don't need treatment. Other congenital heart defects in children are more complex and may require several surgeries performed over the years."
Grace has a condition called dextro-Transposition of the Great Arteries (d-TGA). According to the American-based Centres for Disease Control and Prevention (CDC), d-TGA is a birth defect of the heart, in which the two main arteries carrying blood out of the heart — the pulmonary artery and the aorta — are switched in position, or "transposed". Because a baby with this defect may need surgery or other procedures soon after birth, d-TGA is considered a critical congenital heart defect. Congenital means present at birth.
"I had my very first open-heart surgery when I was just 18 months old," Grace tells me. "Paediatric cardiology was at its — pardon the pun — infancy in Malaysia, and I was one of the first infants to undergo open-heart surgery in this country."
She goes on to add with a smile: "My doctor back then was Datuk Dr Mazeni Alwi, who's one of the nation's foremost heart paediatric cardiologists at the National Heart Institute. He's still my doctor to this day."
GROWING PAINS
"She has only 10 per cent chance of surviving this operation," her parents were told. Even if she were to survive, her brains wouldn't be developed. "They told my parents that I would be a slow learner all my life. It was either that or I might live in a vegetative state. They didn't know what to expect."
Those were not comforting words at all. "Thank God I survived it. I mean, it's almost surreal to think that they were expecting me to not survive 31 years ago," she says, shaking her head.
Sometimes the heart defect can't be fully repaired, but these procedures like the one Grace underwent as an infant can improve blood flow and the way the heart works. It's important to note that even if their heart defect has been repaired, many people with congenital heart disease are not cured.
"People think it goes away after surgery but it doesn't. Even my parents thought I was fine after surgery," she shares, adding: "But it is a condition that I've had to live with, and it came with some limitations to my lifestyle."
She was a late bloomer in many ways. "I only learnt how to walk when I was two," she reveals. "My brother had to prop me up on my first birthday. The reason my brother is in all of my birthday photos is because I couldn't stand on my own two feet!"
Sacrifices were not something she had to put in alone. "My parents gave up a lot of things so that they could focus on raising a child with congenital heart disease. My mum, who had plans on resuming her teaching career, gave it up to care for me. My father left the air force so that the family could remain in the Klang Valley, where I could continue to get treated," says Grace softly, adding: "They also gave up the dream of having more children. They stopped with me. I needed their attention and care after all."
Her mum had to ensure that Grace was taken care of. At times, it felt that she had to be treated with extreme care. "I couldn't engage in rough horseplay like other children. I had open-heart surgery so obviously I couldn't go through the risk of being hit in the chest."
It also meant watching life go by on the sidelines, which could be frustrating. "It was," she concedes, adding: "I looked normal on the outside. But I was fragile on the inside. Other children found it hard to comprehend that fact."
She confesses to not liking school. "Ask any parent. Children with congenital heart disease are often very naughty!" Were you? I ask. "Oh yes!" she replies blithely. "If I wanted a toy, I'd cry until I turned blue in the face. That's enough to get any anxious parent panicky. My mother finally clued in to that fact of course!"
But going in and out of hospitals was almost down to a normal routine. "I think I was fine with the fact that I had more hospital check-ups than any regular kid. It didn't really bother me until I was around almost 10 years old," recalls Grace.
Grace had gone to school that day and halfway during her lessons, she didn't feel well. "I don't feel well. Please call my mother," she told her teacher. One of her arteries was blocked and Grace was soon scheduled for her second open-heart surgery. She slipped into a coma for more than a month.
The doctors finally decided to put in a pacemaker, a small device that's implanted in her heart to help control her heartbeat. "That hit me hard," she confesses, adding: "I realised then that I wasn't normal like anyone else."
Her impacted health gave Grace the determination to compensate by excelling in her studies. "I had a teacher who'd go the extra mile to teach me while I was sick at home. She encouraged me so much and I'm still in touch with her to this day," she says, smiling. "She ensured that I wasn't missing out when I couldn't go to school."
Throughout her secondary and university days, Grace was determined to do the things she cannot do. "I wanted to compete in sports and run," she says with a determined tilt to her chin. "But I was careful. Or at least I tried to be."
"If you know you cannot do it, don't!" her mother often reminded her. But she confesses to testing her limitations, often with dire results. When she was 18, she exerted herself at the gym and had to be rushed to the hospital because she couldn't breathe. "I found myself in an ambulance with the siren blaring, being rushed to the IJN (National Heart Institute) all because I wanted to exercise at the gym!" she says wryly.
A HEART TO HELP
For the longest time, she refused to disclose her condition to other people. "I wanted to live a normal life," she says simply. But there are some things she can't explain away. "I can't exert myself. I can't hike up a hill and I can't go on a roller-coaster," she says, adding: "I've had friends who didn't understand but I've also had friends who stuck with me through thick and thin. There were some who stayed away thinking that my condition was contagious."
It was difficult to explain to people why she wasn't as physically active because she looked physically fine on the outside. "I didn't feel like telling people that I had a heart condition. I didn't want anyone's pity. You tend to grow up fast when you're a sick kid because you have to learn to say 'no' from a young age."
When Grace was 18, she had to undergo another operation to change her pacemaker. "It was hard because that was the period when other young people her age were off applying to college. I on the other hand, had to go for surgery and couldn't even comb my hair!" she remarks softly.
She gave up her ambition of pursuing medicine. "I was initially sad at giving up my dream, but then I remembered the dreams my parents gave up to raise me well. So, I decided to toughen up and make the most of what's handed out to me," she says matter-of-factly.
Grace graduated from Universiti Malaya with a Bachelor's in English Literature. Today, she's working with Kingdomcity, a global Christian organisation. In 2017, she was asked to participate in the International Congenital Heart Leadership Summit (ICHLS) in Barcelona, Spain, that brought in cardiologists from all over the world.
"I was already in 'Rakan IJN' (Friends of IJN), a support group for patients with heart issues, as with my mum. In fact, the invitation went to my mum who was involved in patient support. She'd been connecting and supporting other mums who had children with congenital heart disease," she recalls.
Since Grace was a patient, she was invited along with her mum to Barcelona. "I finally met people my age with the disease for the first time!" she shares.
In order to create a stronger voice on behalf of congenital heart disease and RHD (rheumatic heart disease) patients and families, the participants agreed unanimously to form a new, independent non-profit organisation called the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH).
The collective vision for Global ARCH is to improve and prolong the life of every heart child and adult — no matter where they were born. Grace is currently the board member of the organisation.
Another incident further solidified her desire to help. She recently ran into a young parent at church with a child who was born with the same disease she had.
"As the mother tearfully shared her story, I was able to comfort her because I went through a similar experience," she says, adding: "The mother was shocked because I'd never shared about my condition before."
She grows quiet for a while. "I could never share my story before," she confesses finally. "As much as I've accepted the fact that I had congenital heart disease, I still struggled with opening up to people. It was my best-kept secret. I wasn't exactly ashamed of it, but up to then, I didn't feel the need to talk about it."
Grace offers a story of mutual culpability and weakness with a kind of grace that gives her the final word. "Once I stopped and accepted my vulnerability, and decided to share my story with people, that's when I felt release," she says.
Adding, she concludes: "I could help bring comfort to someone else. It finally made sense. My condition wasn't simply a burden that I had to deal with. It has now become a platform for me to channel hope to people."