SINGAPORE: When Ms Esther Xu heard the nurse exclaim “Oh!” at her 12-week gynaecological ultrasound scan, she held her breath and tried to have positive thoughts.
Up until that point, she would ask her gynaecologist the same question at every appointment: Would her baby look just like her?
No matter how much the 37-year-old had braced herself for the replies, she could not keep her tears back when she was eventually told that her son would “actually be like you”.
“I broke down after leaving the clinic and asked my husband one question. 'Are you sure you want to have this boy?'” Ms Xu, who is a digital designer, said.
With her face buried in her hands as the couple sat at a bus stop after the medical appointment, she called to mind the elderly man who used to point and laugh at her every time she alighted from the bus as a teenager.
“Hey, the shorty is coming,” he had mockingly said.
She recounted: “People would come over and mock me, asking me questions like why I’m so short and what did my parents do to me.”
Esther Xu and her husband Dawei Soh playing with their two-year-old son Elliot. (Photo: CNA/Lim Li Ting)
Ms Xu, whose height is 125cm, has hypochondroplasia, a form of short-limbed dwarfism.
The genetic condition has been passed down to her two-year-old son, and she now worries if she would be blamed for giving him life.
“I still feel very bad and worry if my son will scold me in future and ask why I brought him into this world. I think I’ll tell him I’m sorry that this happened to him.”
Before Ms Xu could continue, her husband Dawei Soh interjected: “If he asked that question, I’d ask him back: 'What is so incomplete about you other than your height? You can lead a normal life, there is no point in blaming anyone.'”
Their son Elliot is now a two-year-old whose height is 77cm. The average height of children his age is 85cm and above.
The couple has had countless conversations about how to prepare him for school, and not a day goes by without them thinking about how he will be treated by others and fearing that he will be the subject of cruel jokes.
Mr Soh, a 36-year-old code specialist, said: “What’s going to happen when he goes to school? Will he get bullied? We can protect him when we’re alive, but we will be gone one day. Who will protect him?”
As it is now, the family often faces stares and whispers whenever they are out together in public, especially when Ms Xu was pregnant.
"People were looking at me in a very different way. People used to think that my protruding belly was fake and had the misconception that women with dwarfism are infertile.
"We live very normal lives. We can still get married, have children and maybe grandchildren one day. Maybe one day, Elliot will find someone who loves him for who he is."
Like his mother, Elliot was not born with any other major developmental delays, and his parents have worked consistently over the last two years to ensure he leads a normal life.
When he started walking about two months later than most children his age, they trained him to climb up and down the stairs along the corridor of their flat in Punggol to get him up to speed.
"My husband would make sure he practises walking and climbing every day. We even got a surprise call from his teacher when he climbed down the stairs on his own. I was touched that our training didn't go to waste."
Cycling, swimming and trips to the playground were some of Elliot's favourite activities, just like most other children.
Since his height was out of his control, the couple worked on helping him build a strong and loving personality.
Ms Xu reiterated several times during the interview with CNA how important it was that Elliot grew up feeling supported and would know how to manage moments of insecurity and self-doubt – a trait she had mastered over the years.
Having to use an umbrella while getting up the stairs in school meant that she was often met with confused looks and snide remarks. Some were easy to brush off, others took a hit to her self-esteem.
She recalled an incident in secondary school when she represented her co-curricular activity (CCA), St John Ambulance Brigade, in the marching contingent at her school’s National Day ceremony.
“I took a peek at the video and realised that everyone was about the same height except for me," she said as she used her hands to depict the sudden drop in height when the video panned to the middle of the group.
"I felt very bad and asked my officer if I made the squad look bad and uglier. Instead, he said that I made the squad look very special and unique. It made me realise that I shouldn’t be so mindful about how I look, but put in 100 per cent effort to do things better,” she said.
Although that incident happened more than two decades ago, Ms Xu said it felt like a turning point in her life where she started to focus on the abilities she had instead of worrying about things that were out of her control.
She also spoke highly about her friendships from school that have stood the test of time and echoed the words of her brother, who often told her that she was “a lot of girls’ dreams” for the life she lives.
“Some women can’t find a partner or have a baby and feel incomplete without a family. He would always remind me to look at who I am right now and that I am a complete person.”
She hopes to impart these lessons to Elliot as he grows older and to teach him that he has the capabilities of his able-bodied peers.
“Many people have the mindset that a special child should be hidden at home and you shouldn’t let them face the world. That’s completely wrong. They can appreciate the world in a totally different way.”
The Soh family on Nov 24, 2024. (Photo: CNA/Lim Li Ting)
Although Ms Xu now walks with her head held high and has grown accustomed to the stares and whispers she often faces, her insecurities about her height used to run deep, especially when she first started using dating applications.
Having her height listed on her profile in a dating app meant she was bombarded with never-ending questions, with some even accusing her of lying about it to prompt men to start a conversation with her.
“But the conversation usually stops when I tell them I have dwarfism,” she said.
This happened like clockwork until she swiped on Mr Soh's profile. He did not care about her height and was insistent on meeting her.
“I kept emphasising my height to him and that I have short legs, so some people think I look like an alien,” she added.
“But he was very straightforward and said: 'I don’t care how tall or short you are, how beautiful or ugly you are. I just want to find a life partner'.”
Now, three years after their marriage, Mr Soh still believes he made the right choice and would not have it any other way.
“To me, a person’s characteristics are more important. Among all the girls I’ve met … some of them weren’t ready to settle down or make sacrifices, but she was mature enough to want to start a family and be a good wife and mother,” Mr Soh said as he firmly held her hand.
Having been parenting for a while now, the couple is thinking of having a second child.
One big question that crosses Ms Xu’s mind is this: Is in-vitro fertilisation (IVF) an option for their second child?
If Ms Xu were to conceive her second child naturally, there is a "50-50 chance" the baby would have dwarfism. But going through IVF would reduce that chance significantly, she explained.
"I didn’t want another child to face the same scrutiny from the people around him."
Hypochondroplasia, which Ms Xu has, generally has less severe symptoms than achondroplasia. There are no official figures on the number of people in Singapore with either condition, but achondroplasia affects around one in every 30,000 newborns globally, said the Ministry of Health previously.
Both conditions are autosomal dominant conditions. Genes come in pairs – two copies from both parents – and one copy of the genes is sufficient to cause a disease.
Those with achondroplasia or hypochondroplasia have a 50 per cent chance of passing on the affected copy of the gene to their offspring, said Dr Jeannette Goh, genetics service consultant at KK Hospital.
No treatments are available for either condition before birth, but there are treatments after birth to increase the height in children with achondroplasia, she added.
In the meantime, Ms Xu will continue helping her son be confident and focus on the abilities he has, just like the other children with dwarfism whom she came to know from a group called Little Mighty Warriors.
It is a support group for people with varying types of short stature and has more than 20 local and foreign children residing in Singapore.
“The support group is very important to me," Ms Xu said. "And I felt very comfortable and can be honest speaking to people who are just like me. When Elliot grows older, he might have a playmate there that he can share stories with and they will be able to support each other.”
Nurul Sharbana Rennie and her five-year-old daughter Nuha Eliya Muhammad Hanafi, who has dwarfism. (Photo: CNA/Lim Li Ting)
Five-year-old Nuha Eliya, who is 89cm tall, was playing a dance game on her Nintendo Switch and strutting about doing her favourite dance moves when CNA visited her family’s home in Yishun.
Her mother Nurul Sharbana, 35, said: “I started working on her confidence since she was very young and would always remind her to focus on what she can do and not what she can’t.
“It’s like a mantra and I tell her every day that she’s a good artist and a good dancer because I want her to work on her strengths and be self-confident.”
Five-year-old Nuha Eliya Muhammad Hanafi uses a stepping stool to reach the kitchen countertop. (Photo: CNA/Lim Li Ting)
Ms Sharbana, who is an early childhood educator, still remembers the day she found out that her daughter has achondroplasia – it felt like her “world came crashing down”.
“I was extremely devastated and it took me about two months to snap out of it and told myself that if this was meant for me, I’m going to work on making her life better.”
Unlike Ms Xu, Ms Sharbana does not have dwarfism and had to learn how to support her daughter in the years to follow.
What she did not expect was to be impressed at every turn by how much her child could do in terms of developmental milestones.
“She started walking at 13 months and the genetics doctor was really surprised. It was considered early for someone with dwarfism.
“The genetics doctor advised us to see her as a normal child and not to treat her like a baby because of her height. So we taught her skills according to her age.”
One thing that needed some effort was finding shoes to fit the girl's feet.
"She was already walking and could only fit into baby shoes, which have soft soles and are not meant for walking," Ms Shabana said. She jokingly added that she has “saved so much money” since Nuha does not outgrow her shoes and clothes as quickly as other children.
With a string attached to the door handle of her bedroom and stools placed at different corners of the house, Ms Sharbana taught Nuha the importance of being independent and encouraged her to do things around the house on her own.
Nuha Eliya Muhammad Hanafi pulls on a red string to open a door. (Photo: CNA/Lim Li Ting)
Ms Sharbana believes that her daughter’s friendly demeanour and outgoing attitude will help her not to feel small.
“She has shown that in a room full of typically average-height children, she can really shine. She wants to be heard and it’ll be a breeze for her to make friends.”
In kindergarten, Nuha is already getting questions about her height and has been taught how to answer them confidently.
Even with all that she has done so far, Ms Sharbana still has days when she feels sad and wonders what it will be like for her daughter when she enters primary school, so she reminds herself that her girl was born unique.
“I know primary school children are more vocal. They are more curious, so I worry if she will be able to go through or overcome what people might say.”
The Little Mighty Warriors support group has not only allowed both mothers to find out more about how they can better help their children with dwarfism, it has also been a safe space for the children to be comfortable in their own skin.
Ms Sharbana said: “Nuha is very happy when she gets to play with kids of her own size and age. There’s no point trying to hide them, but it’s important to teach them social and survival skills.
"The group has given both of us community support that has really helped us.”
This is exactly what Mr Joshua Khoo, founder of the support group, wanted to do when he started it in 2022.
The 32-year-old freelance photographer said: “This group was important in creating a mentorship programme where the adults of this condition can come in and nurture the next generation. We didn’t have such support during our time and we didn’t want children with the condition to feel left out.”
Joshua Khoo is the founder of a support group called Little Mighty Warriors. (Photo: CNA/Lim Li Ting)
Mr Khoo, who has achondroplasia, said “every child with this condition will have some kind of bad experience”, recounting his own when he was pushed down the stairs in primary school.
He is determined to educate people in the community and encourage parents to use the support group to learn more about how to enrich their children's lives.
“Many members have asked if they can create their own playdates with other parents. My hope is that children and caregivers will be able to set up their own community programmes and I can be a support system to bring in resources for them to better integrate into society."
People with the condition often hear about the support group via word of mouth, or get linked up with members through their doctor, Mr Khoo explained.
Adults with the condition have also sought career advice from other members of the group.
However, Mr Khoo highlighted that many members still find acceptance in society and the workplace a stumbling block, and more needs to be done to create awareness on the abilities that people with the condition have.
He recounted that three of his members have been rejected from job opportunities due to their height.
"People with this condition are both physically and intellectually normal, but yet they are still struggling to find proper jobs due to society's stigma on whether they're capable enough to perform as well as others."
This is the second of two articles on people in Singapore with short stature. Read the first story, published on Dec 25, 2024, on how two young adults cope with their condition.
Continue reading...
Up until that point, she would ask her gynaecologist the same question at every appointment: Would her baby look just like her?
No matter how much the 37-year-old had braced herself for the replies, she could not keep her tears back when she was eventually told that her son would “actually be like you”.
“I broke down after leaving the clinic and asked my husband one question. 'Are you sure you want to have this boy?'” Ms Xu, who is a digital designer, said.
With her face buried in her hands as the couple sat at a bus stop after the medical appointment, she called to mind the elderly man who used to point and laugh at her every time she alighted from the bus as a teenager.
“Hey, the shorty is coming,” he had mockingly said.
She recounted: “People would come over and mock me, asking me questions like why I’m so short and what did my parents do to me.”
Esther Xu and her husband Dawei Soh playing with their two-year-old son Elliot. (Photo: CNA/Lim Li Ting)
Ms Xu, whose height is 125cm, has hypochondroplasia, a form of short-limbed dwarfism.
The genetic condition has been passed down to her two-year-old son, and she now worries if she would be blamed for giving him life.
“I still feel very bad and worry if my son will scold me in future and ask why I brought him into this world. I think I’ll tell him I’m sorry that this happened to him.”
Before Ms Xu could continue, her husband Dawei Soh interjected: “If he asked that question, I’d ask him back: 'What is so incomplete about you other than your height? You can lead a normal life, there is no point in blaming anyone.'”
Their son Elliot is now a two-year-old whose height is 77cm. The average height of children his age is 85cm and above.
The couple has had countless conversations about how to prepare him for school, and not a day goes by without them thinking about how he will be treated by others and fearing that he will be the subject of cruel jokes.
Mr Soh, a 36-year-old code specialist, said: “What’s going to happen when he goes to school? Will he get bullied? We can protect him when we’re alive, but we will be gone one day. Who will protect him?”
As it is now, the family often faces stares and whispers whenever they are out together in public, especially when Ms Xu was pregnant.
"People were looking at me in a very different way. People used to think that my protruding belly was fake and had the misconception that women with dwarfism are infertile.
"We live very normal lives. We can still get married, have children and maybe grandchildren one day. Maybe one day, Elliot will find someone who loves him for who he is."
Like his mother, Elliot was not born with any other major developmental delays, and his parents have worked consistently over the last two years to ensure he leads a normal life.
When he started walking about two months later than most children his age, they trained him to climb up and down the stairs along the corridor of their flat in Punggol to get him up to speed.
"My husband would make sure he practises walking and climbing every day. We even got a surprise call from his teacher when he climbed down the stairs on his own. I was touched that our training didn't go to waste."
Cycling, swimming and trips to the playground were some of Elliot's favourite activities, just like most other children.
Since his height was out of his control, the couple worked on helping him build a strong and loving personality.
Ms Xu reiterated several times during the interview with CNA how important it was that Elliot grew up feeling supported and would know how to manage moments of insecurity and self-doubt – a trait she had mastered over the years.
Having to use an umbrella while getting up the stairs in school meant that she was often met with confused looks and snide remarks. Some were easy to brush off, others took a hit to her self-esteem.
She recalled an incident in secondary school when she represented her co-curricular activity (CCA), St John Ambulance Brigade, in the marching contingent at her school’s National Day ceremony.
“I took a peek at the video and realised that everyone was about the same height except for me," she said as she used her hands to depict the sudden drop in height when the video panned to the middle of the group.
"I felt very bad and asked my officer if I made the squad look bad and uglier. Instead, he said that I made the squad look very special and unique. It made me realise that I shouldn’t be so mindful about how I look, but put in 100 per cent effort to do things better,” she said.
Although that incident happened more than two decades ago, Ms Xu said it felt like a turning point in her life where she started to focus on the abilities she had instead of worrying about things that were out of her control.
She also spoke highly about her friendships from school that have stood the test of time and echoed the words of her brother, who often told her that she was “a lot of girls’ dreams” for the life she lives.
“Some women can’t find a partner or have a baby and feel incomplete without a family. He would always remind me to look at who I am right now and that I am a complete person.”
She hopes to impart these lessons to Elliot as he grows older and to teach him that he has the capabilities of his able-bodied peers.
“Many people have the mindset that a special child should be hidden at home and you shouldn’t let them face the world. That’s completely wrong. They can appreciate the world in a totally different way.”
The Soh family on Nov 24, 2024. (Photo: CNA/Lim Li Ting)
FINDING LOVE
Although Ms Xu now walks with her head held high and has grown accustomed to the stares and whispers she often faces, her insecurities about her height used to run deep, especially when she first started using dating applications.
Having her height listed on her profile in a dating app meant she was bombarded with never-ending questions, with some even accusing her of lying about it to prompt men to start a conversation with her.
“But the conversation usually stops when I tell them I have dwarfism,” she said.
This happened like clockwork until she swiped on Mr Soh's profile. He did not care about her height and was insistent on meeting her.
“I kept emphasising my height to him and that I have short legs, so some people think I look like an alien,” she added.
“But he was very straightforward and said: 'I don’t care how tall or short you are, how beautiful or ugly you are. I just want to find a life partner'.”
Now, three years after their marriage, Mr Soh still believes he made the right choice and would not have it any other way.
“To me, a person’s characteristics are more important. Among all the girls I’ve met … some of them weren’t ready to settle down or make sacrifices, but she was mature enough to want to start a family and be a good wife and mother,” Mr Soh said as he firmly held her hand.
Having been parenting for a while now, the couple is thinking of having a second child.
One big question that crosses Ms Xu’s mind is this: Is in-vitro fertilisation (IVF) an option for their second child?
If Ms Xu were to conceive her second child naturally, there is a "50-50 chance" the baby would have dwarfism. But going through IVF would reduce that chance significantly, she explained.
"I didn’t want another child to face the same scrutiny from the people around him."
Hypochondroplasia, which Ms Xu has, generally has less severe symptoms than achondroplasia. There are no official figures on the number of people in Singapore with either condition, but achondroplasia affects around one in every 30,000 newborns globally, said the Ministry of Health previously.
Both conditions are autosomal dominant conditions. Genes come in pairs – two copies from both parents – and one copy of the genes is sufficient to cause a disease.
Those with achondroplasia or hypochondroplasia have a 50 per cent chance of passing on the affected copy of the gene to their offspring, said Dr Jeannette Goh, genetics service consultant at KK Hospital.
No treatments are available for either condition before birth, but there are treatments after birth to increase the height in children with achondroplasia, she added.
Also read:
In the meantime, Ms Xu will continue helping her son be confident and focus on the abilities he has, just like the other children with dwarfism whom she came to know from a group called Little Mighty Warriors.
It is a support group for people with varying types of short stature and has more than 20 local and foreign children residing in Singapore.
“The support group is very important to me," Ms Xu said. "And I felt very comfortable and can be honest speaking to people who are just like me. When Elliot grows older, he might have a playmate there that he can share stories with and they will be able to support each other.”
Nurul Sharbana Rennie and her five-year-old daughter Nuha Eliya Muhammad Hanafi, who has dwarfism. (Photo: CNA/Lim Li Ting)
BUILDING CONFIDENCE
Five-year-old Nuha Eliya, who is 89cm tall, was playing a dance game on her Nintendo Switch and strutting about doing her favourite dance moves when CNA visited her family’s home in Yishun.
Her mother Nurul Sharbana, 35, said: “I started working on her confidence since she was very young and would always remind her to focus on what she can do and not what she can’t.
“It’s like a mantra and I tell her every day that she’s a good artist and a good dancer because I want her to work on her strengths and be self-confident.”
Five-year-old Nuha Eliya Muhammad Hanafi uses a stepping stool to reach the kitchen countertop. (Photo: CNA/Lim Li Ting)
Ms Sharbana, who is an early childhood educator, still remembers the day she found out that her daughter has achondroplasia – it felt like her “world came crashing down”.
“I was extremely devastated and it took me about two months to snap out of it and told myself that if this was meant for me, I’m going to work on making her life better.”
Unlike Ms Xu, Ms Sharbana does not have dwarfism and had to learn how to support her daughter in the years to follow.
What she did not expect was to be impressed at every turn by how much her child could do in terms of developmental milestones.
“She started walking at 13 months and the genetics doctor was really surprised. It was considered early for someone with dwarfism.
“The genetics doctor advised us to see her as a normal child and not to treat her like a baby because of her height. So we taught her skills according to her age.”
One thing that needed some effort was finding shoes to fit the girl's feet.
"She was already walking and could only fit into baby shoes, which have soft soles and are not meant for walking," Ms Shabana said. She jokingly added that she has “saved so much money” since Nuha does not outgrow her shoes and clothes as quickly as other children.
With a string attached to the door handle of her bedroom and stools placed at different corners of the house, Ms Sharbana taught Nuha the importance of being independent and encouraged her to do things around the house on her own.
Nuha Eliya Muhammad Hanafi pulls on a red string to open a door. (Photo: CNA/Lim Li Ting)
Ms Sharbana believes that her daughter’s friendly demeanour and outgoing attitude will help her not to feel small.
“She has shown that in a room full of typically average-height children, she can really shine. She wants to be heard and it’ll be a breeze for her to make friends.”
In kindergarten, Nuha is already getting questions about her height and has been taught how to answer them confidently.
Even with all that she has done so far, Ms Sharbana still has days when she feels sad and wonders what it will be like for her daughter when she enters primary school, so she reminds herself that her girl was born unique.
“I know primary school children are more vocal. They are more curious, so I worry if she will be able to go through or overcome what people might say.”
A SUPPORT NETWORK
The Little Mighty Warriors support group has not only allowed both mothers to find out more about how they can better help their children with dwarfism, it has also been a safe space for the children to be comfortable in their own skin.
Ms Sharbana said: “Nuha is very happy when she gets to play with kids of her own size and age. There’s no point trying to hide them, but it’s important to teach them social and survival skills.
"The group has given both of us community support that has really helped us.”
This is exactly what Mr Joshua Khoo, founder of the support group, wanted to do when he started it in 2022.
The 32-year-old freelance photographer said: “This group was important in creating a mentorship programme where the adults of this condition can come in and nurture the next generation. We didn’t have such support during our time and we didn’t want children with the condition to feel left out.”
Joshua Khoo is the founder of a support group called Little Mighty Warriors. (Photo: CNA/Lim Li Ting)
Mr Khoo, who has achondroplasia, said “every child with this condition will have some kind of bad experience”, recounting his own when he was pushed down the stairs in primary school.
He is determined to educate people in the community and encourage parents to use the support group to learn more about how to enrich their children's lives.
“Many members have asked if they can create their own playdates with other parents. My hope is that children and caregivers will be able to set up their own community programmes and I can be a support system to bring in resources for them to better integrate into society."
People with the condition often hear about the support group via word of mouth, or get linked up with members through their doctor, Mr Khoo explained.
Adults with the condition have also sought career advice from other members of the group.
However, Mr Khoo highlighted that many members still find acceptance in society and the workplace a stumbling block, and more needs to be done to create awareness on the abilities that people with the condition have.
He recounted that three of his members have been rejected from job opportunities due to their height.
"People with this condition are both physically and intellectually normal, but yet they are still struggling to find proper jobs due to society's stigma on whether they're capable enough to perform as well as others."
This is the second of two articles on people in Singapore with short stature. Read the first story, published on Dec 25, 2024, on how two young adults cope with their condition.
Continue reading...