Children of the Dead (Award Winning- PAHO)
‘Children infected with HIV may remain well for sometime but become more seriously ill as the infection affects their immune response’
‘We don’t need people to feel sorry for them. We need volunteers just to come with a bright spirit, play games, cricket, with them, read and sing’
“I just came from pronouncing another child dead,” Dr David John told me over the phone on Monday night. “That’s two children in two weeks,” I said. “Two children in two weeks,” he repeated. The line went quiet for a few seconds. “First baby Conchita, and now little Kesi,” I thought. “Was she in pain?” “I try, coming down to the wire, to make them pain free, with medication round the clock if I have to, because I think everyone should die with dignity,” he replied.
Dr David John is attached to the Cyril Ross Nursery in Tunapuna (established in 1993, it is a project of the Society of St Vincent de Paul) which takes care of some 17 HIV positive and AIDS children between the ages of one and ten. It is the only one of its kind in this country. Last week, they were grieving for Conchita who died a few days before her first birthday, and buried a day before I was taken to the nursery by Catherine Long (head of Pour L’Innocent, an NGO for underprivileged children).
The supervisor, Jacqueline John, although not a certified nurse, cares for the children like her own, keeps a sharp eye for symptoms (pneumonia is a major cause of illness and death in HIV positive children) and answers to the call of “Mummy” to all of them. Where were the children’s mothers? “Most of them are dead. They contracted AIDS from promiscuous male partners and through intravenous drugs. Those that are alive are too poor and ill to take care of them.” Fathers? “Most dead too.” Relatives? “Dead or unwilling or unable to take care of them.”
By the time we got there, the schoolroom was empty. Classes are held between 10-12. Children are taught individually or in groups. A girl of seven skipped about in a yellow dress. A boy of four held on to me, laughing; it was a game. While the older children played boisterously, the toddlers slept in cots. They looked normal and healthy, except for Kesi who was in the isolation room. A thin, pretty, five-year-old, dying to a tape of children’s Bible stories. Her small fingers were curled around a half drunk bottle of Chubby. Her nails were covered with garish red nail-polish (a reminder of girlish imitation vanity, fun, so out of place now).
“Kesi needs round-the-clock care,” she told us. “She asks for things she cannot eat, pizza, junk food. She can barely drink anything. She went downhill after a bout of chicken-pox. It’s a matter of time now.” And it was. She was dead in six days.
More than half of the children at the nursery have AIDS. Without combination therapy medication which costs $30,000 a child a year they will be dead within the next two to three years. The rest are HIV positive and could develop AIDS at any time. With the medication their life expectancy, according to Dr John, is “indefinite.” But there is no money to get it so the children die.
In January 1986 the first child with Paediatric AIDS (PAIDS) was diagnosed at the POS General Hospital. Children infected with HIV may remain well for some time but become more seriously ill as the infection affects their immune response. The human immune deficiency virus (HIV) attacks the body’s immune system, weakening the body’s ability to fight off illness. AIDS (Acquired Immune Deficiency Syndrome) is not a disease in itself but a group of infections associated with HIV infections. How long it takes an HIV-infected person to develop signs of AIDS depends on their state of health and access to treatment.
Because HIV infection often progresses quickly to AIDS in children, the nursery monitors the health of each child every day. Dr John visits often, and tries to ward off the many infections the children are prone to with Septra (prophylactic medication) and looks for early signs of the virus, such as oral thrush, and fungus infection in their mouths. “Much depends on early intervention,” he said. But to keep track of the virus and treat it accordingly, Dr John needs a test called the Viral Load which is not available in Trinidad. But the children are still luckier than many. “The nursery does a lot with a little,” says Dr John.
Outside the sick room, the children had begun their lunch of rice, stewed chicken, and vegetables. Jacqueline broke from my relentless questioning to give each child a spoonful of a pink “cough medicine”, Septra, an anti-biotic costing the home $1,500 a month, and now in short supply in pharmacies. They crowded around “Mummy”, in what was obviously a familiar routine. “Anybody didn’t get any?” she shouted, in the tone of an overworked mother and only when there was no answer, sat down to talk again, her eyes dull with sorrow, saying, “If I’m home I miss them.”
At Conchita’s funeral they all cried. “When children die we talk to them. We tell them they are going to heaven to be an angel. After Conchita died they went quiet, talked in groups, asked questions. They don’t know about the virus. The workers never mention it to them. There’s no point. “What was she like?” “Spoiled, playful, always in my lap. You had to love her. She had a way about her I can’t explain.” Conchita came from Sangre Grande hospital a baby of five months. Her mother died soon afterwards. Her father who is HIV positive used to visit her twice a year and always said: “Take care of her when I die.” “She came in at three kilograms and gained weight. In the last few weeks she had diarrhoea and was on the IV in the hospital. She was discharged two weeks ago and eating well. A few days later her eyes got larger. Her face changed. They were signs we were losing her. The day she died I worked from 7 am to 3 pm. I fed her two bowls of chicken soup, a cup of Jell-O and gave her vitamins.
“We noticed her appearance was fixed, her breathing was shallow, her temperature high, 105 degrees, but her body was cold. By four we knew we were losing her. She died that evening.
“The worst was having to tie her up. The funeral was at the St Vincent De Paul Chapel on Duncan Street. She looked pretty. She was buried in St Ann’s cemetery. It was well attended. There were more people than last year and the year before.”
What did she mean? I asked, not understanding.
“I have buried a child for every year I’ve been here. When I get up at night to see my children I see them. I hope for the best and expect bad news anytime.”
Dr John does not agree with the estimate that one in four people in this country are HIV positive. He says one in 50. That’s still 200,000 people who are HIV positive, many of whom have children. And, he says, up to 5,000 to 10,000 children are HIV positive or have AIDS.
“You’re dealing with dangerous figures,” said Dr John. “The odds are stacked against us. Inadequate treatment in hospitals, little education on the virus, and a taboo on condoms mean more people will be infected.”
Dr John’s shocking revelation was that Kesi and Conchita could have been alive today, not just if they had combination therapy but if their mothers’ doctors had done something as routine as wearing surgical gloves and advised them to take an AIDS test.
“Doctors, simply by testing every pregnant woman in their care for AIDS, could reduce the number of children born with AIDS by 30-50 percent by treating an HIV positive mother, and her unborn and new infant for six weeks with a drug known as AVT or Retrovir, a registered drug available in state hospitals.
“They have a duty to overcome the cultural phobia (many women believe, ‘HIV? not me’). Not to test these women is madness, madness, madness.
“Many doctors are either not sophisticated enough to use AVT or they lack the experience. This doesn’t excuse them from researching AVT and using it more.
“Many doctors are also not managing children with AIDS. They are simply treated for symptoms, patched up for their symptoms and sent home to die.”
My mind flew back to the hour I spent at the nursery, sitting at one of the children’s lunch table talking to an angry Jacqueline John:
“In December when we took two of them to the hospital with chicken pox the doctors in Mt Hope ignored us for six hours. We were humiliated. The young doctors were afraid to touch the children and were handing them to one another, giggling and laughing. The staff brought them home. We worked with these two kids night and day until they were well. There is one,” she said, proudly pointing to an energetic ten-year-old boy.
Dr John confirmed this: “There are still doctors who will deodorise their room from unnecessary fear of the virus. There is enough known on the virus for us not to project uneducated views about it.”
Doctors should know HIV is transmitted through a person’s body fluids, blood, semen and vaginal secretions. It is not spread by touching someone who is infected.
Last year, after a spurt of publicity, the home was inundated by curious visitors who “came to see how the children look.” Some come to cry. “We don’t need people to feel sorry for them. We need volunteers just to come with a bright spirit, play games, cricket with them, read and sing with them, give them attention. Sadness is not welcome.”
The children need more than a bright spirit. They need donations to stay alive. It costs $1,000 a month to maintain each child at the nursery. They are short of bed linen, surgical gloves, clothes, and need lanterns as electricity goes frequently in the area. Although any help is welcome, the nursery needs “solid and sustained” funding. The Cyril Ross Nursery is inviting 20 corporations, or groups of individuals, to commit to making regular monthly contributions totalling at least $20,000 each month for a period of 12 months just to keep the nursery going. Combination therapy which could prolong the children’s lives indefinitely costs up to $3,000 a month a child.
Approximately three million children have died since the start of the epidemic. By the end of ‘97 a million children worldwide were HIV positive.
A Census report estimates that by the year 2010, if the spread of HIV is not contained, AIDS may increase infant mortality by as much as 75 percent and mortality in children under five by more than 100 percent in those regions most affected by the disease. The Caribbean is reported to have the second highest number of HIV positive people per population, in the world. It also has recorded the fastest rate of growth in the world. Trinidad and Tobago has the second largest incidence of AIDS in the Caribbean.
“The children can have some of their life,” said Dr John. With your help. Call the St Vincent de Paul Society at 623-4926. Or support Pour L’Innocent which is holding a fund-raising event at the Country Club on March 29 at $100 a ticket to raise money for combination therapy. Call Ms Long at 628-8160. And if you can’t give money, give your time, says Jacqueline. “Conchita died and others will die. Come and talk to them. They have brought plenty happiness to me.”