The firefly syndrome
Fireflies don't live long. They're born, they shine briefly, then they fade. Babies born with HIV don't live long, either. But if only there were enough people to love and care for them, their brief lives may still have the chance to shine, like the firefly, before they fade.
by Jennifer Sharples
by Jennifer Sharples
GLOBALLY, 22 million people are believed to carry the HIV virus and at least one million of them are children, according to United Nations statistics. It is estimated that three quarters of a million Thais are living with HIV.
Dr Jiraphan Kanlapravit of the National Economic and Social Development Board, believes that the rising rate of HIV/AIDS in newborn babies here will make it unnecessary for the government to urge a reduction in population growth by 1999. Because by that time, over 300,000 Thais will have died from AIDS, including large numbers of children.
Nobody knows how many children have been infected to date. Many of them are dying as a result of contracting the disease from their mothers while still in the womb, or from contaminated breast milk.
One study by the Institute for Population and Social Research at Mahidol University predicts by the Year 2000 there will be over 300,000 living children born to mothers infected by HIV.
William Timmons, director of the Concordia Child Welfare and Education Foundation, runs projects for underprivileged children. One is the Home for HIV Babies in Chiang Mai. He believes that the authorities so far have not been successful in curbing the rates of infection.
"Organisations such as ours can't get ourselves involved in AIDS prevention as many NGOs are already working in this area," he said. "We find ourselves focussing on the children who are left behind.
"The only way we can make an impact is working together with a network of NGOs (non-government organisations) who care for these children and will ultimately assist the government in the task of finding permanent homes. Our plan is to build a network of small NGOs responsible for bringing up orphaned children with or without AIDS."
A few NGOs have already established homes to care for infected children. Inevitably, because of the special medical care required, such homes have to be small with a high staff ratio. At the Agape Home for Babies with HIV/AIDS, Concordia's first project, there are 10 infants under 18 months. The home is cheerful and immaculately clean. At first glance, the babies look like babies anywhere, well nourished and responsive, giving gummy smiles in response to attention.
On closer inspection, one or two have runny noses and another is throwing up all her milk. Another is having his back firmly patted in an effort to clear the phlegm from his lungs; unless this is done several times a day, he would choke to death.
Director of the home, Avis Rideout, an extrovert and practical Canadian, has lived in Thailand for 15 years and has four children of her own. She was looking unusually subdued when we spoke to her.
"Yesterday, we lost a five-month-old boy," she said. "He seemed quite healthy and was doing well, then suddenly his lungs filled with fluid and he died -- just like that. But that's what happens with these babies.
"A pair of six-month-old twin boys, both HIV, were handed to us yesterday and we have another one who is sick and must be taken to the hospital to be properly examined. A lot of our time is taken up with trips to the hospital and between them, these 10 kids are on at least 30 different medications.
"We really need a full-time nurse but we don't have the funding. In fact, we need many items including strollers to take the babies for walks and an industrial washing machine, as well as disposable diapers."
While some cynics may wonder why the Agape Home is expending resources on children who are going to die shortly, Avis states firmly that the home in not an orphanage and their main concern is love and care for those children in the greatest need, regardless of how short their lives will be.
Their ultimate aim is to try and find Thai families to adopt them, although she realises that this may be an impossible task. Setting an example, Avis and her husband Roy are in the process of legally adopting three-year-old Nikki who was born of an HIV-positive mother and has AIDS herself.
When the Rideouts discovered Nikki, she was living in a state-run home for AIDS children in Chiang Mai. After a family discussion with their own children who include a 10-year-old adopted Thai son, it was agreed that Nikki should become part of the family.
"I believe that if people can see how normal Nikki is, then they will open their hearts to children like her," said Avis.
"We are also planning on applying to adopt a seven-month-old boy who is HIV positive. We're adopting them because we love them and want them to have a normal life like our own children and be part of a family.
"I am not thinking ahead to when they get seriously sick. I only see all the pleasure they bring us now and want to make them as happy as possible.
"It was a family decision and the kids fully understand what having an HIV-positive sister means. At least when they die, they will have had happy lives."
Although she has AIDS, Nikki appears plump, healthy and happy as she follows her mum around. Looking at her it is hard to believe that her life will probably end before her 10th birthday. Picking up and holding the other babies, it is difficult to resist the urge to take them home.
A little girl that anyone would want to cuddle is five-month-old Joy. Bright and beautiful, she was abandoned on a roadside and discovered by a policeman answering a call of nature. She appears to be HIV-free and is available for adoption under the auspices of the Department of Public Welfare.
Then there is four-month-old Bee whose mother was an HIV-positive prostitute who lived with her pimp. She had no idea who Bee's father was and died shortly after the birth. Although it is likely that Bee is HIV positive, Avis would dearly like to find a family for her.
"We keep them from birth to death unless they are free of AIDS, in which case they can be put up for adoption or handed back to the social services," she said. "If we had sufficient funding, we would also like to open another home for children who are AIDS free but who have been orphaned as a result of their families dying from the disease.
"Our main priority is to try and find Thai families to adopt or foster all these children and if that is not possible, then foreigners. We are a community home that encourages visitors as we want people to respond well to the children and see there is nothing to be afraid of.
"Our neighbours have been very good and often drop in with supplies. We work very closely with the Public Welfare Department and in particular with Mayuree Yoktree, the director of the Vieng Ping Babies Home.
"They let us take the youngest babies as they need the most specialised care. Mayuree is a very enlightened individual who cares greatly about the children. We'll do whatever it takes to help these kids as they deserve love and compassion."
AIDS specialist and paediatrician, Dr Vicharn Vithayasai, a member of both the National and Provincial Committees on Prevention and Control of AIDS, is also taking affirmative action to provide care for AIDS babies and orphans.
As founder of the Support the Children Foundation, he runs four houses for AIDS/HIV-infected orphaned and abandoned children under the age of six with the financial assistance of the Association Francois Xavier Bagnoud.
Dr Vicharn's spacious, well-equipped homes have three bedrooms and cater for only six children apiece. Because of the children's immunity deficiency, they only take a few. They keep them clean and healthy, and give them all the attention they need.
The location of the homes is kept secret since Dr Vicharn doesn't want to find large numbers of abandoned babies on his doorstep; nor does he want too many visitors since the children are sick and susceptible to infection.
He knows all the children personally and follows each one's progress. Children such as Torboon who came into one of the homes from Bangkok with pneumonia and herpes. After good care, he survived until the age of six. Sweet little Yoyee, who was abandoned in Bangkok, is mentally retarded but she is learning to say a few words now.
"Every evening, physicians come in to examine the children as they can recognise signs of sickness and treat them at once. We take in only babies most seriously in need. We have seen eight die during our four years of operations.
"We also found seven children had been misdiagnosed and were AIDS free. They are now in the care of the Public Welfare Department.
Sadly, there will never be enough houses to tackle this problem. Almost one in 40 of all pregnant mothers is HIV positive, and of one million births a year, 24,000 babies are born to infected mothers. Nearly half of these babies are likely to become infected.
"From what we are seeing, more babies are being born and abandoned," said the doctor. "The children's suffering begins when the parents get sick and they are rejected by the extended family and community."
SUPPORT the Children runs a programme to show village people that they will not catch AIDS from their association with children of infected parents. It provides food supplements, clothes, books, school fees, lunches and uniforms for children in over 20 villages. It has assisted over 300, including AIDS orphans who do not have the disease as well as infected children, all of whom so far are under the age of seven.
Dr Vicharn explains that in the villages, most of the families are poor and cannot afford to take in orphans without financial help. Last year the organisation spent almost 4 million baht assisting 320 children at around 10,000 baht plus per head.
"Money well spent," says Dr Vicharn.
"It gives children a future. We provide counselling for those who need it, and for parents who are still alive. We offer income generating support. This is important as it helps take away the worry from dying parents about what will happen to their children.
"We ask who they want as guardians and we approach their choices carefully, but the main concern is still poverty rather than the social stigma.
"Six years ago when I saw children with AIDS being abandoned in hospitals, all the parents were from low socio-economic groups -- usually, the father had died and the mother had no income.
"Initially, we asked government orphanages to help but they didn't want to take these children as they hadn't enough space or personnel. We decided we had to do something ourselves as the problem would only get worse.
"Fortunately, help to establish the houses came from overseas. Because the cost of the houses is so high, we decided to start a second programme to persuade parents not to abandon their children.
"Seventy percent of those affected by AIDS are from the lower socio-economic group. The wealthy have treatment abroad and keep their condition secret. That is why we are not getting donations from millionaires. It is difficult to raise money in Thailand.
"We believe in offering long-term assistance, not merely funding for one year. We never give cash to the villagers in case they misuse it. We put it into weaving, chicken raising and sewing projects so that they help themselves."
Dr Vicharn pointed out that during the last two years, the Public Welfare Department has received more funding to assist AIDS-infected children. They are showing more interest but, he says, government agencies still cannot work effectively or quickly enough.
"We have to get the message across that people must think about their families and their children first," he said. "If people want to have a family, they must not put themselves at risk to AIDS. I know of one where the father, mother, son, daughter-in-law and grandson all died. In another family, the father died of AIDS. His widow re-married and passed on the disease to her new husband.
"Street children are another problem as they sell sex to anyone and indulge in 'comfort sex' among themselves."
The number of babies born to AIDS-infected mothers raises the question of whether or not all mothers should be tested for AIDS and given the choice of an abortion if they are found to be positive.
Some hospitals already do this discreetly without always telling the mothers the results. This would at least prevent them from breast feeding if they are found to be HIV positive. The Medical Association is now pushing for new laws to legalise abortion in such cases.
"Even if children of infected mothers are born AIDS free, they may still become orphans," said Dr Vicharn, "It is all very well for the human rights activists to say abortion is morally wrong, but they have to consider the consequences.
"Who will accept responsibility for the children, pay for their treatment and watch them suffer? It has a high financial and emotional cost."
He is also seeing more teenagers who are HIV positive, some of whom have signed their death warrant after only one or two sexual encounters. His studies show that one percent of boys have been exposed to sex by the age of 13 and by 16, it is 45 percent.
In one study four years ago, there was random blood testing of vocational school students. The results indicated two percent of all the young men were found to be unknowingly infected and 0.7 percent of girls.
Dr Vicharn, who has four sons of his own aged between 23 and 16, believes that students know they shouldn't have sex with a prostitute and so turn to their friends instead. But many boys have already had sex with a sex worker first. This is due to Thai cultural traditions which are hard to change.
There are still a high number of sex workers in Thailand, many of whom will not, or cannot, enforce protection in their dealings with clients.
He finds it heartbreaking to see young graduates dying from AIDS whose families refuse to accept the condition and keep them hidden at home. He believes it is mainly the responsibility of parents to protect their children from AIDS by learning about the subject themselves and then explaining to their children how it is transmitted.
Dr Vicharn and his wife Dr Prakong Vithayasai, head of the Clinical Immunology and Allergy Section at Chiang Mai University's Faculty of Medicine, have produced numerous books and training materials on AIDS.
"I advocate blood testing for couples before they start a family, testing of expectant mothers in the early stages of pregnancy and more hands-on education on the subject for the younger generation," he said.
"Thailand's children are our future and we have to protect them now."
HALF of Thailand's AIDS cases are in the North. Dr Lop Tritan, director of AIDS Counselling and Training Centre (ACTC) World Concern Thailand estimates that 1 million people in the North are HIV positive including about 20,000 children. He estimates by the Year 2000 there will be around 120,000 under the age of 18 who have AIDS.
His organisation is supporting poor village families affected by AIDS by providing food supplements and school fees. Due to budget constraints, they can support only 50 children.
ACTC also offers counselling services for teenagers who are trying to come to terms with the fact they are HIV positive.
"We counsel them to try and live productive lives for as long as possible, but some of them feel suicidal and isolated," said Dr Lop.
"I believe there are fewer teenage cases of HIV than there were some years ago because more of them are aware of the dangers.
"NGOs who set up special homes for infected children are playing an important role as these children are society's responsibility and cannot be ignored.
"The government needs more help from NGOs in this area, and we in turn need more cooperation from the government as well as financial support. Smaller homes where children can get specialised care are essential but it takes a lot of money. The government must give more assistance."
All babies born of infected mothers will test positive for around 12 months, whether carrying the disease or not.
HIV-positive children are especially vulnerable to infection and are prone to ear and chest infections, skin rashes, pneumonia, unexplained fevers and deterioration of the brain. They often fail to thrive and are small for their age.
Dr Vicharn notes that many HIV-positive babies have a low birth weight and often get sick before they are 3 months old. They need hospitalisation from around six months and die before the age of one year.
On death certificates, cause of death may be reported as one of these ailments and not AIDS. This distorts statistics on the number of AIDS-related child deaths.
For more information on the organisations quoted in this article:
Agape Home for Babies with HIV/AIDS
Support the Children Foundation
Concordia Child Welfare and