SCMP Friday, December 8, 2000

Aids, secrets and lies


The six-year-old boy and his four-year-old sister appear healthy and happy, no different from their friends at school and kindergarten. But their mother wishes they had never been born. Though they do not know it, the children are part of a family tragedy. They and both their parents are infected with the deadly HIV virus. Their young mother, Amy, is fighting full-blown Aids.
Amy's life is full of fears and lies. She told the South China Morning Post she would not have wanted her children to come into the world had she known of the suffering which lies ahead for them. The mother, in her 20s, wishes she had been screened for the HIV virus when pregnant, something the Government intends to introduce next year as a matter of routine.
"Had I been given a choice, I would have had an abortion. What I fear the most is that I will die before my children reach 18, that I can no longer take care of them," she says, speaking through the intermediary of a social worker, who put questions to her on the Post's behalf.
"I would die in peace if they could live on and have a normal life."
Amy - not her real name - says she has to lie almost every day to keep her children's condition secret from schools and relatives.
Her daughter attends kindergarten and her brother is in Primary One. Their tiny home in a public-housing estate is stocked with hundreds of different coloured tablets they need to take daily to fight the virus. The pills, some costing about $100,000 a year, are prescribed almost free by public clinics. They seem to be the family's only asset. Amy's husband has an unstable income and she has no job. The family is now living on public assistance.
It has become a ritual for them to take the medicine several times a day. It is like having breakfast, lunch and dinner in any other household.
The terrible truth was only revealed after the boy began suffering from frequent fever and enlargement of the lymph nodes all over his body. Doctors suspected the symptoms were of HIV infection. The whole family was tested and confirmed in May last year to be carriers of the virus.
So far, 12 mother-to-child HIV infections have been recorded in Hong Kong. Some children have died. A recent university study revealed that children who contract the virus from their mother tend not to be diagnosed as HIV positive until months, if not years, after their birth.
If screening of pregnant women is introduced, medication can reduce the risk of the HIV virus being passed on to unborn children, according to medical experts. Amy says her ordeal could have been eased if the screening had been available to her.
The Department of Health and the Aids Advisory Council believe only one-third of all HIV-infected pregnancies are spotted in Hong Kong, and estimate there are between 15 to 20 HIV-infected pregnant mothers each year. But with screening, the current level of between three and six children known to be born with HIV each year is expected to drop to a maximum of two.
Children with the virus can, thanks to a cocktail of drugs, live virtually normal lives. But the prospect of death from Aids is ever present.
The threat of discrimination and misguided fears about the virus being passed on add to their ordeal. Most parents prefer to keep their children's condition secret in order to protect them.
The Post reported last week that at least six infected children were studying in local schools, but the parents of only one of them had told the school authorities about their condition.
Parents and school heads said last week they wanted to be told if a student is infected with HIV so they could take extra precautious. But medical experts said this was unnecessary. They said as long as the schools and students observed universal precautious, there would be no need to identify children carrying the virus.
Like most parents of HIV-infected children, Amy has not told the schools about her children's condition. She fears that her children would be a target of discrimination.
Amy says she has to lie to cover up the secret. Her son has to take at least two periods of sick leave a month for consultation. Each time, she makes excuses.
Her children have no idea why they have to attend clinics frequently and have to take more than 10 tablets a day. They are repeatedly told by their mother that they are sick and that the medicine will help them.
The only outward indication that they have the virus is a slower rate of physical development compared with other children.
Amy says she is unsure when to disclose the truth to her children. She says the most important thing in her mind is to protect them and confidentiality is at the top of her agenda. She has only disclosed their medical condition to two close friends. The children's grandmother, who lives with the family, is kept in the dark.
Amy's relationship with her husband has begun to sour and she says she constantly feels helpless and alone.
She hopes more child-care services will be made available. When she was sick recently, she had to ask her friend to take care of her two children for about a week.
Chan Suk-yan, a social worker at the Aids Foundation, who put questions to Amy on the Post's behalf, says her case is the worst she has come across. "It is devastating to see that such a pair of adorable kids have been infected. I feel very sorry for this family."
She says the husband and wife do not blame each other for contracting the virus. They are not sure who was infected first.
It took the couple some time to get over the shock of being told the diagnosis. "It seems that they have decided to face up to their lives," says Ms Chan. "What they need is more social support, such as financial assistance and child-care services."
Ms Chan, who handles many cases of women with Aids, says some other mothers have asked for advice on whether they should tell schools about their children's HIV infections.
"They worry that other students will contract the disease, but we told them that the chance is extremely low and there is no need to worry about it."
Ms Chan says the foundation has been trying to educate students to take universal precautions in schools.
During school visits, they show students how to help their classmates should they bleed. "The principle is not to touch the blood, and they should call the teachers for help if a classmate gets injured."
The advice applies to all students, not just those who have the HIV virus.
Ms Chan says mutual support among Aids patients helps them cope with their everyday lives: another HIV-infected woman has volunteered to take care of Amy's children when their mother is sick.
"More child-care services will be needed when we have a higher number of HIV-infected children," Ms Chan says. "If the parents get too sick after developing full-blown Aids, they need someone to take care of their children."
Dr Patrick Li Chung-ki, an Aids consultant at Queen Elizabeth Hospital, says the pressure on the health-care system is increasing as more and more children are infected through their mothers. "We try to treat the whole family as one unit. We will group them together for consultation and counselling."
He says there is only a small number of drugs available for children with the HIV virus, making the choices available for treating young victims all the more limited. For now, most will simply live with the virus, unaware of the tragedy into which they have been born.
Ella Lee ( ) is a staff writer for the Post's editorial pages.