Looks like a toddler, but she turns 15 next week
Monday, Jul 29, 2013
The New Paper
By Maureen Koh
SINGAPORE - When Mr Teo Qi Kuang and his wife Florence Chew were expecting their first child, they were like any other couple.
"We prepared for our baby's arrival with so much enthusiasm. We wanted only the best for her," Madam Chew, 44, recounts in an interview with The New Paper on Sunday in her four-room flat in Bukit Panjang.
"I pored over books for information and even bought a journal, all ready to chart our little one's developmental milestones. I even made plans to enrol her in baby shows."
The housewife smiles wryly, then says: "But the recordings stopped three months into my daughter's life."
Pei Shan was first hospitalised when she was four months old. She displayed signs of stridor, a high-pitched wheezing symptom that occurs as the opening between vocal chords becomes narrower.
Madam Chew recalls: "That was when doctors noticed that her limbs were shorter than that of a normal baby of her age. We were advised to monitor her condition as the physical growth of girls can sometimes be slower." That was the start of the couple's journey of pain.
Mr Teo, 54, a cabby, says: "One (health) condition after another followed. Each time we thought we'd overcome one hurdle, another blow would hit us and we would have to go through the roller-coaster ride of suffering and emotions. It does not seem to end."
Till today, doctors have yet to diagnose Pei Shan's exact medical condition.
Pei Shan turns 15 on Aug 5. But for all intents and purposes, she is stuck in a baby's body - baby fat is still present on her limbs, and she wears a diaper. As her parents share the girl's chequered medical history, we are struck by the family's immense courage and resilience.
Mr Teo says: "Our happiness (at being parents) turned to despair. Sometimes, I wonder, why us? What did I do in my previous life that
I now have to repay that debt? In the beginning, we focused only on trying to overcome the situation, there was no time to think of anything else."
He looks this correspondent in the eye, then adds: "I have gone to bed wishing that I'll never wake up the next morning, thinking that it would be so much better that way."
While it may be just a passing thought, it reveals the intensity of his helplessness and frustration.
"But I quickly remind myself that it would be so irresponsible. My wife and child will be left to care for themselves."
Madam Chew gave up her job as a bank clerk to become Pei Shan's full-time caregiver when the girl was nine months old. Today, the devoted mother is sensitive to every sound that comes from her daughter's room.
In the first hour of the interview, Madam Chew excuses herself several times to attend to her child. "She's calling out for us. "Because of Pei Shan, I have become very sensitive to sounds, especially the ones that she makes."
She points to the oxygen machine and says: "You hear this (whirring) sound? It sounds normal to you, right? But no, the sound I hear tells me that it's time to send for someone to service the machine.
"I can hear the sound from the anklet that she wears even when I am in the toilet or kitchen. Or she'd go, 'mee' (short for mummy), and I can hear her calling for me. She makes a movement, I'd be able to hear it. Even if it's very noisy."
Pei Shan is home-schooled.
Madam Chew says: "When Pei Shan was about two years old, she attended Margaret Drive Special School for about a year. But being exposed outside meant she was more prone to infections, and that would land her in the high dependency ward.
"Once, her oxygen level dropped to nearly zero and she turned totally blue. We almost lost her then."
Mr Teo adds in a choked voice: "Whenever she is infected and has to be warded, she has to go through rounds of suffering. Doctors find it tough to draw blood for tests or insert drips because they cannot find her veins.
"Despite the pain, Pei Shan does not cry. She will just bear it because she knows it hurts us. But you'd see big, fat drops of tears rolling down from the corner of her eyes.
"And my heart just shatters."
They eventually pulled her out of school.
Pei Shan's mental growth has been remarkable. She is mature and knows how to please her loved ones.
A keen learner, she plays the keyboard and loves to draw.
A watercolour piece that she did made it to the front cover of Club Rainbow's commemorative hardcover book, Colour of Life, Celebrating 20 Years of Club Rainbow, last year.
Pei Shan communicates mostly in English, but she can also speak Mandarin and Teochew.
Mr Teo says: "She is definitely getting better now... and stronger. I love her so much... it's like... "
His voice trails off and he pauses for a full 20 seconds as he fights back tears and tries to regain his composure.
He raises his hand to wipe his eyes, then continues in an emotion-choked tone: "She is my precious child."
Madam Chew is the caregiver and disciplinarian.
She says in an amused tone: "My daughter always says that mummy is the one who nags and nags. Papa does not scold her. And he gives in to all her requests."
We ask Pei Shan: "Who do you love more?" She breaks into a big smile, giggles, then says: "Both."
Madam Chew replies teasingly: "(Are you) sure or not?" Pei Shan's smile widens. Who is more fierce? "Mummy."
Does your daddy scold or punish you? "Don't have." What about mummy? "Yes."
Pei Shan's responses indicate a child basking in her parents' love. Every little action, word or sentence are what the couple consider miracles.
She spoke her first word when she was about four years old. Madam Chew recalls: "She was sitting here (in the living room) and I was in the kitchen opening the freezer door when I heard a small voice go 'ice'.
"I was stunned. And I was wondering if she said 'eyes'... but I realised she was referring to ice cubes."
Mr Teo shares how once, when Pei Shan had to be sent to the intensive care unit, his wife was crying so hard because they thought they would lose her.
"As my girl was being wheeled into the lift, I heard her call out 'Daddy' so loudly. That was when I told my wife not to worry. I knew for certain our little fighter would be fine," he says.
Going out with Pei Shan wasn't easy initially. Madam Chew relates her earlier experiences: "They'd say, 'Wah so pitiful' and I'd boil (with anger), some parents would pull their children away instantly, like my daughter is a freak, and that makes me fed up too.
"I used to get very angry but her papa would advise me not to allow them to affect me."
She adds: "But there are also kind and really nice people, who'd chat or play with her."
Mr Teo finds consolation in the fact that Pei Shan is oblivious to the outside world.
He says: "Sometimes she'd ask us, why she looks different from the other children (of the same age), and we always tell her that's because she is special and unique.
"She is a happy child and little things like watching her favourite show or eating her favourite food makes her day."
The future, however, remains uncertain for Pei Shan and her parents.
Madam Chew says: "Other than telling us that she is suffering from 'a very rare disease', no doctor or professor has been able to give it a name."
Right now, her medical record reads: "Mucopolysaccharidosis Type III (MPS III)?"
MPS III is a progressive disorder that mainly affects the brain and spinal cord (central nervous system).
Sufferers generally do not display any features of the condition at birth, but they begin to show signs and symptoms of the disorder during early childhood.
Affected children often initially have delayed speech and behaviour problems.
"But even visiting professors and doctors (from overseas) have told us that Pei Shan's case does not quite seem like it too," says Madam Chew.
The name no longer matters. Mr Teo says: "Whatever it is, we just know it's like a blood disorder."
He tells us that they had to abort plans to have another baby. "Doctors told us that if we have a second one, there is a 70 per cent chance that will be like Pei Shan. Would you dare to take that risk?" he says.
While they are now getting financial assistance from KK Women's and Children's Hospital's medical social welfare, the initial stage of medical expenses took a toll on them.
Mr Teo is a declared bankrupt.
The former insurance agent, who used to earn up to $10,000 in good months, had depended on his credit card and bank facilities to pay for the hospitalisation and medical bills, and medical equipment.
He admits: "And as I became more preoccupied with her condition, I lost the passion to work. One thing led to another, and soon I found it hard to keep up with the payments."
He now drives a London cab, which also doubles up as Pei Shan's mode of transport.
"I asked to switch to it this year when my old cab was up for scrap," he says. "It's so much easier to move around with her because we don't have to fold up her customised stroller, which carries the heavy tank of portable oxygen supply."
Mr Teo reveals that he is now worried about his own health - he suffers from Slipping Rib Syndrome, a condition that has worsened in the past couple of years.
"I just went for another MRI last month, and the doctor told me that it's in a 'very severe' state. He suggested that I undergo an operation," he says.
Cost is one issue, he admits. "Where do we find the money? And the worst part is, there is no guarantee I will recover. I've been warned that it's a time bomb sitting inside me, but what if I become paralysed even faster than if I had left it alone?"
He prefers to take each day at a time. It's the same approach he adopts with his child.
"One small step a day. For me, as long as I return home and my baby can greet me in her usual cheerfulness, filled with so much love, it's a day well lived," he says.
Which explains, perhaps, why Madam Chew "complains" that "papa spoils the little one".
"He'd give in to all her requests, like buying an extra pack of biscuits when she still has half a packet at home," she says with a laugh.
Pei Shan loves to order home delivery.
Madam Chew says: "I cut her hair once a month, and one day, I told her, why not sometimes when I do that, we order fast food?
"She was so happy that she told her father when he returned home... and he included a bonus, 'Let's do that once a month then. You get to order what you like when you have a haircut'."
Mr Teo laughs heartily and Pei Shan's face lights up in a big, bright smile.
Pei Shan's life expectancy is not known, say her parents.
Madam Chew says: "I have thought about it and I can tell you honestly, I hope she'll go before us. Otherwise, who will take care of her?
"It took us so many years to learn how to take care of her intricate condition, to be absolutely careful."
She adds: "I have told Pei Shan before, 'If one day you find yourself fighting for your life (in the hospital) and the pain is unbearable, just let go. Mummy will let you do so'.
"I told her that she'd go to heaven and she should not worry about papa and mummy."
Madam Chew smiles sadly: "Pei Shan asked me, 'Then what will you and papa do?'
"Well, I replied that her father will likely continue working and I'd look after others, like suffering children or her grandmother." And the innocent girl asked: "Then what will I do in heaven?"
Madam Chew says: "I told her she'd be an angel. Our little angel in heaven."
Monday, Jul 29, 2013
The New Paper
By Maureen Koh
SINGAPORE - When Mr Teo Qi Kuang and his wife Florence Chew were expecting their first child, they were like any other couple.
"We prepared for our baby's arrival with so much enthusiasm. We wanted only the best for her," Madam Chew, 44, recounts in an interview with The New Paper on Sunday in her four-room flat in Bukit Panjang.
"I pored over books for information and even bought a journal, all ready to chart our little one's developmental milestones. I even made plans to enrol her in baby shows."
The housewife smiles wryly, then says: "But the recordings stopped three months into my daughter's life."
Pei Shan was first hospitalised when she was four months old. She displayed signs of stridor, a high-pitched wheezing symptom that occurs as the opening between vocal chords becomes narrower.
Madam Chew recalls: "That was when doctors noticed that her limbs were shorter than that of a normal baby of her age. We were advised to monitor her condition as the physical growth of girls can sometimes be slower." That was the start of the couple's journey of pain.
Mr Teo, 54, a cabby, says: "One (health) condition after another followed. Each time we thought we'd overcome one hurdle, another blow would hit us and we would have to go through the roller-coaster ride of suffering and emotions. It does not seem to end."
Till today, doctors have yet to diagnose Pei Shan's exact medical condition.
Pei Shan turns 15 on Aug 5. But for all intents and purposes, she is stuck in a baby's body - baby fat is still present on her limbs, and she wears a diaper. As her parents share the girl's chequered medical history, we are struck by the family's immense courage and resilience.
Mr Teo says: "Our happiness (at being parents) turned to despair. Sometimes, I wonder, why us? What did I do in my previous life that
I now have to repay that debt? In the beginning, we focused only on trying to overcome the situation, there was no time to think of anything else."
He looks this correspondent in the eye, then adds: "I have gone to bed wishing that I'll never wake up the next morning, thinking that it would be so much better that way."
While it may be just a passing thought, it reveals the intensity of his helplessness and frustration.
"But I quickly remind myself that it would be so irresponsible. My wife and child will be left to care for themselves."
Madam Chew gave up her job as a bank clerk to become Pei Shan's full-time caregiver when the girl was nine months old. Today, the devoted mother is sensitive to every sound that comes from her daughter's room.
In the first hour of the interview, Madam Chew excuses herself several times to attend to her child. "She's calling out for us. "Because of Pei Shan, I have become very sensitive to sounds, especially the ones that she makes."
She points to the oxygen machine and says: "You hear this (whirring) sound? It sounds normal to you, right? But no, the sound I hear tells me that it's time to send for someone to service the machine.
"I can hear the sound from the anklet that she wears even when I am in the toilet or kitchen. Or she'd go, 'mee' (short for mummy), and I can hear her calling for me. She makes a movement, I'd be able to hear it. Even if it's very noisy."
Pei Shan is home-schooled.
Madam Chew says: "When Pei Shan was about two years old, she attended Margaret Drive Special School for about a year. But being exposed outside meant she was more prone to infections, and that would land her in the high dependency ward.
"Once, her oxygen level dropped to nearly zero and she turned totally blue. We almost lost her then."
Mr Teo adds in a choked voice: "Whenever she is infected and has to be warded, she has to go through rounds of suffering. Doctors find it tough to draw blood for tests or insert drips because they cannot find her veins.
"Despite the pain, Pei Shan does not cry. She will just bear it because she knows it hurts us. But you'd see big, fat drops of tears rolling down from the corner of her eyes.
"And my heart just shatters."
They eventually pulled her out of school.
Pei Shan's mental growth has been remarkable. She is mature and knows how to please her loved ones.
A keen learner, she plays the keyboard and loves to draw.
A watercolour piece that she did made it to the front cover of Club Rainbow's commemorative hardcover book, Colour of Life, Celebrating 20 Years of Club Rainbow, last year.
Pei Shan communicates mostly in English, but she can also speak Mandarin and Teochew.
Mr Teo says: "She is definitely getting better now... and stronger. I love her so much... it's like... "
His voice trails off and he pauses for a full 20 seconds as he fights back tears and tries to regain his composure.
He raises his hand to wipe his eyes, then continues in an emotion-choked tone: "She is my precious child."
Madam Chew is the caregiver and disciplinarian.
She says in an amused tone: "My daughter always says that mummy is the one who nags and nags. Papa does not scold her. And he gives in to all her requests."
We ask Pei Shan: "Who do you love more?" She breaks into a big smile, giggles, then says: "Both."
Madam Chew replies teasingly: "(Are you) sure or not?" Pei Shan's smile widens. Who is more fierce? "Mummy."
Does your daddy scold or punish you? "Don't have." What about mummy? "Yes."
Pei Shan's responses indicate a child basking in her parents' love. Every little action, word or sentence are what the couple consider miracles.
She spoke her first word when she was about four years old. Madam Chew recalls: "She was sitting here (in the living room) and I was in the kitchen opening the freezer door when I heard a small voice go 'ice'.
"I was stunned. And I was wondering if she said 'eyes'... but I realised she was referring to ice cubes."
Mr Teo shares how once, when Pei Shan had to be sent to the intensive care unit, his wife was crying so hard because they thought they would lose her.
"As my girl was being wheeled into the lift, I heard her call out 'Daddy' so loudly. That was when I told my wife not to worry. I knew for certain our little fighter would be fine," he says.
Going out with Pei Shan wasn't easy initially. Madam Chew relates her earlier experiences: "They'd say, 'Wah so pitiful' and I'd boil (with anger), some parents would pull their children away instantly, like my daughter is a freak, and that makes me fed up too.
"I used to get very angry but her papa would advise me not to allow them to affect me."
She adds: "But there are also kind and really nice people, who'd chat or play with her."
Mr Teo finds consolation in the fact that Pei Shan is oblivious to the outside world.
He says: "Sometimes she'd ask us, why she looks different from the other children (of the same age), and we always tell her that's because she is special and unique.
"She is a happy child and little things like watching her favourite show or eating her favourite food makes her day."
The future, however, remains uncertain for Pei Shan and her parents.
Madam Chew says: "Other than telling us that she is suffering from 'a very rare disease', no doctor or professor has been able to give it a name."
Right now, her medical record reads: "Mucopolysaccharidosis Type III (MPS III)?"
MPS III is a progressive disorder that mainly affects the brain and spinal cord (central nervous system).
Sufferers generally do not display any features of the condition at birth, but they begin to show signs and symptoms of the disorder during early childhood.
Affected children often initially have delayed speech and behaviour problems.
"But even visiting professors and doctors (from overseas) have told us that Pei Shan's case does not quite seem like it too," says Madam Chew.
The name no longer matters. Mr Teo says: "Whatever it is, we just know it's like a blood disorder."
He tells us that they had to abort plans to have another baby. "Doctors told us that if we have a second one, there is a 70 per cent chance that will be like Pei Shan. Would you dare to take that risk?" he says.
While they are now getting financial assistance from KK Women's and Children's Hospital's medical social welfare, the initial stage of medical expenses took a toll on them.
Mr Teo is a declared bankrupt.
The former insurance agent, who used to earn up to $10,000 in good months, had depended on his credit card and bank facilities to pay for the hospitalisation and medical bills, and medical equipment.
He admits: "And as I became more preoccupied with her condition, I lost the passion to work. One thing led to another, and soon I found it hard to keep up with the payments."
He now drives a London cab, which also doubles up as Pei Shan's mode of transport.
"I asked to switch to it this year when my old cab was up for scrap," he says. "It's so much easier to move around with her because we don't have to fold up her customised stroller, which carries the heavy tank of portable oxygen supply."
Mr Teo reveals that he is now worried about his own health - he suffers from Slipping Rib Syndrome, a condition that has worsened in the past couple of years.
"I just went for another MRI last month, and the doctor told me that it's in a 'very severe' state. He suggested that I undergo an operation," he says.
Cost is one issue, he admits. "Where do we find the money? And the worst part is, there is no guarantee I will recover. I've been warned that it's a time bomb sitting inside me, but what if I become paralysed even faster than if I had left it alone?"
He prefers to take each day at a time. It's the same approach he adopts with his child.
"One small step a day. For me, as long as I return home and my baby can greet me in her usual cheerfulness, filled with so much love, it's a day well lived," he says.
Which explains, perhaps, why Madam Chew "complains" that "papa spoils the little one".
"He'd give in to all her requests, like buying an extra pack of biscuits when she still has half a packet at home," she says with a laugh.
Pei Shan loves to order home delivery.
Madam Chew says: "I cut her hair once a month, and one day, I told her, why not sometimes when I do that, we order fast food?
"She was so happy that she told her father when he returned home... and he included a bonus, 'Let's do that once a month then. You get to order what you like when you have a haircut'."
Mr Teo laughs heartily and Pei Shan's face lights up in a big, bright smile.
Pei Shan's life expectancy is not known, say her parents.
Madam Chew says: "I have thought about it and I can tell you honestly, I hope she'll go before us. Otherwise, who will take care of her?
"It took us so many years to learn how to take care of her intricate condition, to be absolutely careful."
She adds: "I have told Pei Shan before, 'If one day you find yourself fighting for your life (in the hospital) and the pain is unbearable, just let go. Mummy will let you do so'.
"I told her that she'd go to heaven and she should not worry about papa and mummy."
Madam Chew smiles sadly: "Pei Shan asked me, 'Then what will you and papa do?'
"Well, I replied that her father will likely continue working and I'd look after others, like suffering children or her grandmother." And the innocent girl asked: "Then what will I do in heaven?"
Madam Chew says: "I told her she'd be an angel. Our little angel in heaven."
