When I first worked in Romania, in the early 1990s, there were hushed discussions and rumours about the problem of HIV infection in the institutions. The stories told to me by institution personnel seemed like science fiction, and yet it appears they were true.i That ‘micro-transfusions’ of blood were common practice to try to address poor health in the children’s institutions. This involved injecting babies with blood. The syringes were shared and the blood was not screened. The conditions in the institutions are notorious and cross-infection was common. There were so many children in institutions in Romania that the result was an epidemic of paediatric AIDS in the country, with the vast majority of victims being children in institutions.ii But at this stage, anti-retroviral (ARV) treatment was in its infancy and was certainly not available to children in Romania’s institutions. There was considerable fear of the disease among institution and hospital personnel, which led to practices seriously detrimental to children’s health and development.
A colleague of mine volunteered in a hospital ward, where there were twenty children. Half were HIV positive, the others were simply considered ‘abandoned’. Many of the children were Roma. The personnel were over-worked and afraid to touch the children, who lay in their cots for days on end with no love or affection and little stimulation. The hospital was, quite simply, waiting for the children to die.
My colleague set about changing the practices in the hospital ward. She battled to take children out of their cots and even out of the hospital. The lethargic, under-developed babies quickly became inquisitive, excitable and individual personalities. They enjoyed playing outdoors, going for ice-cream, and becoming part of the community. Although still living in hospital, at least they now had a life, however short. But nothing at that stage could stop the disease, and she stayed until she had nursed each child through their final days and hours.
Towards the end of the 1990s, Romania made a serious attempt to tackle the issue of HIV infection, dramatically changing practices, reducing infection rates and introducing medical treatment. It is now considered as a success story in the fight against HIV/AIDS.iii
Worldwide, in the decades that have followed, global efforts have transformed the way we treat HIV/AIDS, as well as our attitudes towards the disease. So a visit I made to an institution in Bulgaria three years ago came as some surprise. The director of this baby institution – a paediatrician – spoke of the small number of HIV+ children living there and of the need for staff to wear two pairs of surgical gloves to handle them. I walked into one room where one tiny baby lay alone in a cot, and the director urged me to come out immediately and not to touch the child, since she was HIV+ and might infect me. I picked the little girl up and held her, to the horror of the director and other staff. It is astonishing to think that so recently, in European institutions that are supposed to provide care for children, where so much money and efforts has been spent on ‘improving’ the system, that a little girl with an HIV infection would be placed in isolation; would be the object of fear for those who are supposed to nurture and care for her.
Both these stories emphasise a curious point I have noticed in more than 20 years working to end institutionalisation: that institutions established to provide medical care for children have extremely poor health outcomes. Illness and disease – a normal part of all our lives – are better treated in the community than in isolated institutions. Residential institutions are not an effective answer to addressing medical emergencies.
In many respects, the most hopeful practices I have seen are in the poorest of environments. In remote villages in South Africa, before ARV treatment was made available, grandparents provided the community infrastructure to nurse their dying children and to comfort and protect their orphaned grandchildren. A few years ago, in KwaZulu Natal, I met a large group of these women who were dedicating their lives to keeping their extended families and communities going. With a small amount of external funding, they provided palliative care to the dying, fed their grandchildren and made sure they attended school. The villages had an air of sadness, but also of grim determination. It was proof yet again that children only thrive in the loving nurturing environment of the family. That it does not take much to help a family care for their child. And if we all put our resources into supporting families and communities, instead of institutions, even the communities affected most by this terrible disease will beat the HIV/AIDS pandemic.
i Dente, K and Hess, Jamie: Pediatric AIDS in Romania -- A Country Faces Its Epidemic and Serves as a Model of Success. Medscape Multispeciality. http://www.medscape.com/viewarticle/528693 Accessed 01 Dec 2014.
ii Hersh BS, Popovici F, Apetrei RC, et al. Acquired immunodeficiency syndrome in Romania. Lancet. 1991;338:645-649
iii Dente, K et al. ibid.