Care and Support/Children/Hospice/PMTCT/Treatment:
Health-e, An island of hope in a sea of need, by Kerry Cullinan, 02 October 2002
The tiny babies lie side by side in their transparent cots in St Mary’s Hospital’s high-care nursery. A little mouth gasps for air; two little noses have tubes up them. One baby pulls up her pencil-thin legs, stomach taut with pain.
Pain is one of the few things these babies will know well before they succumb to infections such as pneumonia, gastro-enteritis, tuberculosis and meningitis, their bodies’ immunity immobilised by the rampant HI virus passed on to them by their mothers.
There are no last rites for those too small to speak. They die quickly, wordlessly at a rate of about five a week. One dies while I am there.
Their mothers, huddled beside them, bowed over and silent, know that their babies are on death row. Sister Philomena Pakade, who heads the paediatric ward of the hospital, is so burdened by this knowledge that it makes her wish she were young enough to change professions.
"Children are dying like flies, more especially the very small babies," says Pakade heavily, showing me the list of "RIPs" noted down in a small brown exercise book. "In July, we had a death almost every day. These little ones suffer so much. They have just come into the world and the world is so cruel to them."
Around three-quarters of the 200 children admitted each month are HIV positive. "We get so excited when we get an HIV-negative child," says Pakade. "We sit with the mother and talk and educate her about HIV and prevention."
Elsewhere in the busy paediatric ward, toddlers scream from their cots. Skin conditions are endemic – one child’s entire face is covered with angry red pustules of impetigo, or veld sores.
"We didn’t used to see impetigo this bad," says Dr Douglas Ross, superintendent of the Marianhill-based hospital that is owned by the Catholic Missionary Sisters of the Precious Blood. Ironically, now the precious blood of most of their patients is infected with HIV, and this is causing unusual presentations in a number of diseases from impetigo to TB.
A 10-year-old girl lies on her side in a corner of the ward, staring out into the room. Too big to have been infected at birth, Ross suspects she is being sexually abused by a family member.
"This year we have noticed a big increase in HIV positive children between the ages of four and 10. We suspect it is because of sexual abuse," says Pakade.
The 234-bed St Mary’s serves a population of about 750 000 people in the west of Durban’s vast metropolis, 250 000 of whom are estimated to be living with HIV. It gets an 84% state subsidy and no on is turned away from the spotless hospital although the patient load has increased considerably as the HIV epidemic has turned into an AIDS epidemic.
"Our patients are much sicker now than they were 10 years ago, and 50% of them are going to die," says Ross, who has been at St Mary’s for seven years. "We have had to change our expectations about who is going to get better, and also start to pay attention to caring for the carers."
The hospital soon realised it could never deal with the demand, and has thus become heavily involved in community outreach. Its outreach team has trained a network of about 200 volunteers to help families to care for their dying relatives at home.
Preparation for death has become routine at the hospital too, and a Rotary-sponsored palliative care ward for those at the end of their lives will come into operation at the end of October. This will be run by volunteers, and serve patients who cannot get home-based care.
The mounting deaths have presented a new challenge. "We have a problem of abandoned bodies rather than babies," says Ross, with an ironic laugh. "We have to cremate the unclaimed bodies as there’s no space left in the city for paupers’ burials and this cost the hospital about R48 000 last financial year."
But while death is now routine, it still takes its toll. "There is a high level of staff burnout," says Ross. "Staff have to deal with an increased workload, dying patients and, at a personal level, with the effects of HIV in their own families. Every four or five months, one of my staff members dies."
Increasing pressure on St Mary’s makes it feel at times as if the hospital is like the little boy in the Dutch fable who is trying to stop a leak in a massive dyke with his thumb, says Ross.
Nevertheless, the hospital has the remarkable ability to attract funds – and everything from furniture to incubators seems to have been donated. It has also managed to attract a number of other organisations to its premises to start small but promising initiatives aimed at fighting back against the tidal wave of HIV/AIDS.
St Anne’s Clinic on the hospital premises is at the heart of these initiatives. The Catholic Medical Mission Board runs a prevention of "parent-to-child" HIV transmission programme. Headed by a straight-talking nun, Sister Christa Mary Jones, the programme is trying to reach the 6 000 mothers who deliver babies each year in the district to ensure that their little ones don’t end up dying in Pakade’s paediatric ward.
A recent MRC survey found that 54% of pregnant women in the district were HIV positive and Jones’s record book is a mass of red-pen positive entries.
"It’s a scary number and we’ve had our sadnesses," Jones acknowledges. "But we are planning for the future with the HIV positive mums. They get ongoing counselling and they feel so bonded with the counsellors they are like limpet mines! We can really see the effects of a positive message on their health."
In the clean, bright ante-natal clinic, counsellors spend an entire hour counselling a patient (the national average is 20 minutes) before the HIV test. During this time, they explain how HIV is transmitted and prepare them for the results. If positive, the women are encouraged to get the anti-AIDS drug nevirapine for themselves and their babies and to breastfeed exclusively for six months and then wean rapidly. Since the project’s launch in January, the four-person staff has reached around 900 women and an astounding 96% have agreed to take the test.
Next door, the University of Natal and Harvard Medical School are in the process of launching a clinical study to explore the effects of short courses of anti-retroviral (ARVs) drugs to boost the long-term immunity of babies with HIV.
"St Mary's is ideal because it is truly a community-based hospital and this presents an opportunity to not only treat individuals but to reach out to a community," says Harvard’s Dr Krista Dong.
Thirty babies will be enrolled from St Mary’s ante-natal clinic. After confirming that they are HIV-infected, 10 babies will have anti-retroviral treatment delayed until they start presenting with AIDS-related symptoms. Ten will start ARVs immediately after diagnosis (shortly after birth) and 10 will also start immediately but the drugs will be given a set intervals with breaks in treatment, called "structured treatment interruption" (STI).
The idea behind the STI study, says Dong, is to get the babies when their immune systems are still intact and to teach their immune systems to recognise the virus and develop an immune response to keep it in check.
The three-year trial will have a year of treatment followed by two years of close clinical monitoring of those on the STI arm. The year of treatment will be interrupted three times. Throughout the treatment and interruptions, each baby will be monitored intensively, and the drugs will be restarted as soon as the HIV in the babies' blood rises above a certain level.
Once the scheduled treatment is over, if any of the babies develop symptoms of AIDS, their mothers will have the option to restart them on ARVs. Their parents will also be able to access care through the Ithemba Centre, which is being planned alongside the STI study.
The brainchild of the hospital’s Dr Kay Ajao, a gregarious young doctor given to big hand gestures, the Ithemba Centre aims to offer 1 000 adults anti-retroviral drugs within two years.
Patients will be drawn from four groups: hospital staff, community outreach volunteers and people from the housegolds they serve, outpatients and parents of babies who have been through Sister Jones’s ante-natal clinic.
"We aim to start in the next six weeks with 20 people," says Ajao. "We have managed to get money from the Doris Duke Foundation and the San Francisco AIDS Foundation is getting the drugs donated."
Ross says the centre only has about half the money it needs, but they’re starting it anyway and hope to raise the balance as they go along.
Ithemba, which means hope in isiZulu, also plans to offer ongoing counselling and support to those living with HIV, providing a home for those who feel as if they are outcasts because of the stigma associated with AIDS.
Tiny and embattled, St Mary’s
celebrates its 75th anniversary this month at a time when Ross is trying to
raise R3-million for the operating costs that no one wants to fund. Despite
few role models and a sea of need, the hospital staff and its supporters are
fighting back with a quiet but dogged determination that is inspirational.