Life with microcephaly
The Zika virus has been linked to microcephaly, a birth defect which leaves a baby with an unusually small head. The condition has existed in S'pore for some time. TNP speaks to a family about raising a child with the condition
As a baby, Foo Hou Jing's head would not stop shaking when he was picked up.
His mother, Madam Sim Bee Hah, says in Mandarin: "He looked like a normal baby, but we felt that he wasn't normal. His head kept shaking around."
It worried her until her son turned seven months old, when she and her husband took Hou Jing to a family clinic in Bukit Panjang.
The doctor took one look at him and told them they had to visit a specialist at National University Hospital.
The diagnosis worried them - the doctor told them Hou Jing has microcephaly with global developmental delay.
Today, the condition has been linked to Aedes mosquitoes spreading the Zika virus to pregnant mothers.
Health Ministry figures say that the condition is rare but has existed in some form here even before Zika hit Singapore. (See report below.)
But back then, the doctor was not able to explain to the parents why Hou Jing had microcephaly, perhaps due to the broad number of possible causes.
Madam Sim, now 51, says: "Maybe because the science was not well known then. With all the news about Zika now, could I have been bitten by a mosquito during my pregnancy? I may never know."
All they were told was that he would require regular monitoring and care from then on. If the condition became worse, Hou Jing might have to go under the knife.
His father, who wants to be known only as Mr Foo, says: "We were upset and worried. When our baby has a serious condition like that, how can we not be?"
They spoke to The New Paper on Sunday at their five-room flat in Jurong while Hou Jing, now 25, played computer games - his favourite self-taught pastime.
He has an older brother, Mr Foo Hou Wei, 28, who does not suffer from the same condition.
Hou Jing now works at a thrift shop in Redhill that is run by the Movement for the Intellectually Disabled of Singapore (Minds) from noon to 6pm, travelling by himself on MRT trains and buses.
He has also participated in swimming and bowling competitions under the Special Olympics banner, with a bunch of awards and certificates stashed in his home.
It is a remarkable change from a childhood marred by learning disabilities and mobility issues.
But the path to his recent independence did not come easy, especially for Madam Sim.
Soon after the diagnosis, Madam Sim decided that she should leave her job as a quality assurance staff member in a factory to support her son, while Mr Foo would continue providing for the family as a technician, with a family income of under $3,000 per month.
Madam Sim also had to keep a close eye on her son as he could not understand complex instructions nor travel on his own. He also had problems interacting with people for the first 20 years of his life.
Hou Jing attended Margaret Drive School, a special school for intellectually disabled children, and he would also join Minds.
At the SIA-Minds Employment Development Centre, he learnt how to pack and seal headsets into plastic bags, and he also made friends.
GUIDANCE
These institutions slowly taught Hou Jing to be self-sufficient, a process which required his mother's guidance.
Madam Sim recalls: "He needed to do everything slowly, even when putting on his clothes. I taught him how to put his right arm into the correct sleeve first, then slowly do the rest, otherwise he might wear his shirt the wrong way.
"Even the buttons on his shirt had to be tailored bigger, so he could handle them."
When out in public, Madam Sim and Hou Jing had to deal with misunderstandings, including once when Hou Jing accidentally tripped a stranger when Madam Sim left him alone for a while.
She says: "The man immediately started scolding Hou Jing rudely. I saw this from afar and rushed over to defuse the situation.
"The problem is that Hou Jing's microcephaly isn't obvious, so people are quick to judge him as a normal person."
Hou Wei, also had to put up with unkind words from his friends when they visited. Some would call his brother derogatory labels like "stupid" or "retarded".
Hou Wei, a recent Singapore Institute of Management graduate with a degree in accounting and finance, admits that he was ashamed of his brother at first but realised later that he has an obligation to care for Hou Jing.
"I have to look after him in the future (when my parents are gone), he is my brother after all. I don't see him as a burden," he tells TNPS.
Madam Sim says: "Sometimes I wonder if Hou Jing didn't have this condition, could we have been much better off financially?
"But I don't have a pessimistic view on this, I don't think of it as a sacrifice.
"If anything, it is what a parent should do."
Low risk of developing microcephaly
Microcephaly, a rare condition that causes small heads in babies, has been in Singapore even before the Zika virus arrived here.
Between 2011 and 2014, the annual number of microcephaly cases registered with the National Birth Defects Registry in Singapore ranged from 5 to 12 every 10,000 live births, a spokesman for the Ministry of Health says.
Dr Low Kah Tzay, a paediatrician at Mount Elizabeth Hospital, explains that detection can be difficult.
"It is only a clinical sign, meaning the person's head is smaller than most of the population. Occasionally, a person may have a small head without any other signs or symptoms," he says.
The condition is determined when the head circumference of a child is smaller than his peers of the same age and gender.
Such a condition is associated with neurological abnormalities such as delays in motor development or learning difficulties.
Microcephaly has four broad groups of causes: genetic syndromes such as Down syndrome, intrauterine infections such as measles and rubella, maternal alcohol or drug abuse, and the premature fusion of skull bones.
In most cases, there is no specific treatment for microcephaly and only complications, like hearing impairment and cataract, are treated, says the doctor.
While studies are still being conducted on the Zika virus, it has also been closely associated with microcephaly.
Dr Low says: "So far, animal studies have shown that the virus can affect developing brain cells. Researchers are not sure of the exact mechanism and the factors affecting the extent of injury."
INFECTED
However, the likelihood of a baby born with microcephaly after the mother has been infected with the Zika virus is very low.
International data shows that pregnant women who are infected with Zika have a 1 to 13 per cent chance of having a baby suffering from microcephaly.
Brazil is at the high end of that range, according to researchers at the Centers for Disease Control and Prevention and Harvard T.H. Chan School of Public Health. To date, reports say there have been more than 1,800 cases of Zika-linked microcephaly in newborns there.
However, the health authorities in Brazil have recently said that while microcephaly is linked to the virus, cases may not be as widespread in the country as initially thought.
In an interview with science journal Nature that was published in July, one health official says that while the Zika virus has spread throughout Brazil, the cases of babies born with microcephaly are heavily clustered in the country's north-east.
"We suspect that something more than the Zika virus is causing the high intensity and severity of cases," says Dr Fatima Marinho, director of information and health analysis at Brazil's Ministry of Health.
Co-infections of Zika and other viruses, such as dengue and chikungunya, could be working together to cause the high incidences of birth defects in the area, she adds.
Elsewhere in the world, the numbers are a lot lower.
In Colombia, which is the country second-most affected by the virus, the number of Zika-related microcephaly births there is 21 despite having almost 100,000 Zika cases, according to the World Health Organisation.
Earlier this year, medical journal The Lancet also published a study of the Zika outbreak in French Polynesia between 2013 and 2015 and found that the risk of microcephaly in newborns was about 1 per cent.
Virus strain not from South America
Sequencing analysis of the Zika virus found in two of the patients from the Aljunied Crescent and Sims Drive cluster has indicated that the virus likely evolved from a strain that was already circulating in South-east Asia.
The virus from these two patients was not imported from South America.
The sequencing was completed by the National Public Health Laboratory and A*STAR's Bioinformatics Institute.
"The analysis found that the virus belongs to the Asian lineage and likely evolved from the strain that was already circulating in South-east Asia," the Ministry of Health (MOH) said yesterday.
The research team will release more details shortly, it added.
There are 26 new cases of Zika infections in Singapore as of noon yesterday. This raises the total number of locally transmitted cases of the virus to 215.
Of the 26 cases, 24 are linked to the Aljunied Crescent, Sims Drive, Kallang Way and Paya Lebar Way cluster, MOH and the National Environment Agency said in a joint statement.
Two patients have no known links to any existing cluster, but authorities did not say where they live.
During a walkabout in Pasir Ris yesterday to raise awareness about the mosquito-borne disease, Deputy Prime Minister Teo Chee Hean says that the best response to the Zika virus is to eradicate the mosquitoes and their breeding grounds.
While this requires a concerted effort, people in Singapore should try to live life as normally as possible, he adds.
"The most important thing is to deal with Zika in an appropriate manner... which is good collection of information, dissemination of information and attacking the problem, which is to attack the mosquitoes and their breeding grounds," he says.
- The Straits Times.
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