Facing the challenges of Aids may be too much for the medical profession, writes a children’s doctor at a large hospital
I am an ordinary South African doctor working with sick children in a South African hospital. My colleagues the doctors and nurses and many other professional people are also ordinary.
We do our daily duty some do more, others less. We are unexceptional in our thoughts, manners and practices. You would find similar people looking after sick children in many parts of the country.
For many years it has been our daily bread to care for sick children most of whom we could cure. But now we ordinary, unexceptional people are facing something extraordinary and exceptional; something that challenges the foundations on which our professional lives are built.
We have seen it coming but we did not know that it would have the power to remould our practice and our relationship with the children, to challenge the essence of our humanity (up to now we thought we had enough humanity in us to do our jobs), even our sense of self. This extraordinary and unprecedented challenge is brought about by what HIV is doing to children. (That HIV causes Aids is not something we argue about we see the evidence daily.)
Aids comes upon most children like the poetic “wolf on the fold”. It seizes them in a fast-forward caricature of the adult disease. Years are telescoped into months, months into weeks. The final deadly expression of the immune deficiency is often also its first manifestation. Sometimes parents hardly have time to take in the scent of the plague before their child is gone and they are left to face their own mortality.
These shocks are now our daily fare. Like the steady reverberations from a pile-driver, they rattle the pillars on which, up to now, we have built our professional lives.
In this weekly diary I aim to share how HIV/Aids in children is challenging our lives and attitudes. This may seem self-centred. What about the children and their parents and grandparents those who suffer most acutely from the plague? Indeed their lives, their suffering are the centre of the story. But we doctors, nurses, social workers and other health professionals are players in the tale willy-nilly. We could escape. Indeed some have already run away from the enormity of it. That is part of the story the many-hued story of childhood HIV/Aids, some aspects of which I chronicle here.
Week one
This week, as in most weeks in my or my colleagues’ working lives, I was consulted by a family whose child was probably going to turn out to have HIV infection. The baby girl was three months old and had a mild heart condition. She was sicker and weaker than one would have expected. She had a cough. Was it simply pneumonia?
Oh, one’s hands are used to it now: the rubbery feel of the enlarged lymph glands in the armpit, in the neck and at the base of the skull; the firm enlarged liver and spleen felt in the abdomen.
One’s eyes have seen it too often: the rash, the white plaques in the mouth indicating thrush. The baby did not move very much. Was this the deadly brain disease of childhood Aids, the encephalopathy?
Her mother (a teenager, unmarried) had been trying so hard. She gave intelligent detail to the problems she had noticed with her little daughter. The baby’s father sat silently in a corner. This relationship had led to his girlfriend being rejected by her mother.
I began my explanation. Underneath there was a mixture of anguish and despair. Out of my mouth came the professional sound of controlled and concerned care. I gradually opened the door on the monster. (I was lucky. The family spoke English.) “Virus infection”, “testing”, “possible HIV”. One watches the eyes for the recognition or understanding. This time there wasn’t much to see. The implications for themselves were not recognised by the parents. Or had I not put it clearly enough? Sometimes one is so gentle that the import of the message is not communicated. Was I trying to protect myself from witnessing what I know must come into these young people’s lives sooner or later if I am right? I am not yet numb to the pain I have to inflict so often. I fear that in time I may lose such feeling. I fear that my young colleagues who have more direct dealings with patients than I do may become inured to this cavalcade of suffering to protect themselves, to protect their minds. The proportion of their time spent giving bad news to parents is so high now. We were not trained for this.
The little family is now moving through the system. The blood test will be done followed by post-test counselling. In the next couple of days they may come to know a future unlike anything people so young would ever have contemplated.
Week two
A new set of junior doctors has arrived. For most of them it is either their second or third year out of medical school. And HIV is waiting for them. Within two weeks two of them have pricked themselves with potentially HIV-infected needles. We teach them how to take precautions but still, in the hurly-burly of hospital paediatrics, accidents do occur. One of the doctors has pricked a nurse as well as herself.
We believe we have a sympathetic and efficient system for dealing with these accidents but we cannot take away the fear. The chance that a hospitalised child is carrying the virus is now high. The chance that a needle-stick injury will lead to HIV infection is mercifully low.
But even such a small chance of contracting an incurable, potentially fatal disease can lead to mental turmoil in the weeks it takes until one knows that one is in the clear.
One doctor has pricked herself with a needle used on an HIV-infected baby.
She has been very brave or it seems as if she has been shrugging her shoulders and continuing her work while taking the anti-HIV tablets. She remains at risk every day as she takes blood specimens from or sets up intravenous lines on struggling, squirming babies and children. It is not nice having to hurt children so we not infrequently (in some cases habitually) cut corners in personal safety to ensure that we only have to prick the baby once to get the specimen or the drip up.
Hundreds of these accidents are happening every year. Some doctors react with bravado and don’t even report the incident; others suffer mental anguish.
After a discussion of these issues at a tea break an elderly colleague commented that the practice of medicine is “not what it was”. Indeed it is not. I recently met a medical man who did not want his daughter to follow in his footsteps and take up a medical career because of this risk. Another ripple in society’s pond brought about by HIV. Will young people continue to want to take up a profession that has such risks attached to it?
A little good news. The baby I saw last week did not have HIV infection. She had picked up her mother’s German measles while still in the womb. She has suffered some damage from the German measles virus but has been spared the relentless depredations of the other virus.
Week three
At the end of each working day the doctors who will be on hospital duty overnight tour the children’s wards to identify the sickest children and those for whom special instructions have been given. One evening when I was on duty, in one ward, five of the seven children for “hand-over” had Aids. One was quite stable he was on treatment for tuberculosis affecting his heart, a complication of his disease. The next, a baby three months old, had spent time in intensive care for severe pneumonia. After three weeks of complex treatment he had gone home only to return later the same day ill again. Once more he was desperately sick. His mother sat impassively at the cotside. Was it worth readmitting this little one to the discomforts and indignities of intensive care or was his life to be so brief that this suffering would outweigh the benefits of a slightly longer life?
In the next two cots were babies who had been in hospital for a few weeks. They had had pneumonia and still required extra oxygen to breathe. They were neither getting better nor worse. They would have to move to the back of the ward if sicker babies who had a better chance of recovery came in during the night.
At the back of the ward, we were told, was a child with Aids who had been vomiting blood. The day staff had decided not to try to find the cause of this because he was at the end of his life. He had many complications of Aids.
Comfort was now the watchword. No cardiopulmonary resuscitation was to be done if he had a cardiac arrest.
Thank you. Another routine hand-over. We moved on to the next ward.
Week four
We have been discussing the impact of HIV/Aids in children on our daily work. The conversation flits from staff member to staff member. It contains ideas and thoughts about how we might cope with the weight of the needs of the children and their families. People’s experiences and cases they have worked with season these discussions.
I note that Ted has dropped out of these exchanges. Ted has worked in paediatrics since the 1970s and is a senior colleague who runs one of the hospital wards. The look in his eyes contains desperation and defeat. Nine of the 26 children in his ward have late-stage Aids-related diseases. In well-nigh 30 years of caring for sick children Ted has not faced childhood death on this scale. One of the pleasures of paediatric practice is the return of very ill children to full, bouncing health; being a witness to the transformation of an irritable, weak little body to a crowing, smiling cherub. Yes, one also witnesses sadness and loss but the scales have always been weighted on the recovery side. Until now.
I wonder if we are now to face experiences similar to those practitioners of science-based medicine in the poor parts of 19th century Europe. For them, as it is becoming for us, childhood death was an apparently unpreventable daily fact of life.
It would be hard for Ted to accept this as part of his daily professional life. For his successors, in the absence of anti-HIV treatments, dealing with dying children will need to be a central part of their training.
Week five
On Monday this week I led a seminar on child health for senior medical students. The students are in the fifth week of their paediatric placement. We were discussing the place of children in society. The issue of the rights of children had come up. What did they think about the publicity surrounding Nkosi Johnson’s illness? Was the media attention appropriate? What were the young boy’s rights in this situation?
The students raised the issues you might expect. Yes, the publicity raised the profile of HIV/Aids as it affects children and the need for raised public awareness of childhood Aids might limit the rights of an individual child. Conversely, no, it might be an invasion of Nkosi’s right to privacy. But what these young minds felt was chiefly wrong with the message carried by the final phases of the young boy’s tale was that this was not the real picture of childhood Aids. The students had noted that it is largely babies who are dying of Aids, not 11-year-olds. It is babies in desperately poor families who are dying, not school-going children brought into the middle classes. If the message of Nkosi swept aside the real message of childhood Aids the hundreds of babies dying miserably in hospital or poverty-stricken homes the publicity surrounding him would have done the cause of childhood Aids a disservice.
Week six
This week I travelled to a regional hospital to conduct a ward round. My role was to advise on difficult cases. I was shown to the cot of a small baby whose head was inside a perspex bubble a way of delivering high concentrations of oxygen for the child to breathe. This is not an unusual sight in a children’s ward and always brings space travel to mind.
This four-month-old baby boy was HIV-infected and had been needing this amount of oxygen for two weeks. His lungs had been damaged by pneumonia caused by the opportunistic infectious agent, Pneumocystis carinii.
At the bedside was an arrestingly beautiful and deeply saddening tableau. Seated on a chair and holding his brother’s tiny hand was an immaculately dressed boy about eight years of age. His eyes were clear; his skin had the strong healthy sheen of youth. His handsome face was grave as he held his baby brother’s gaze through the perspex.
Standing at his side was his three-year-old sister, in a pink knitted dress and matching woollen hat complete with perky pom-pom. She looked up at her big brother as he sat quietly at the bedside. The two children were there alone. I did not want to ask where their parents were.
Week seven
Emotions are running high. Junior staff are demanding greater leadership from senior staff. They feel at sea when managing the difficult decisions so often encountered when dealing with HIV-infected children. I have seen the difficulty young doctors have in accepting a decision that a baby is to have palliative care only. If they do accept it, it is not clear to them what they must do after that.
The resulting meeting of senior staff reveals sensitive feelings on the issues surrounding the care of these children.
Some vehemently deny the charge of poor leadership. But, the juniors have countered, there are service areas where how to care for HIV-infected children seems to be more clearly defined than in others. Senior staff who do not work in the cited areas respond by pointing out the unique circumstances that allow better care in those areas: a well-defined unit, enough hospital beds to allow a walk-in facility for children known to the unit, stable staffing. There is much more to it than that, contends Peter, a senior representative of one of these units. Management protocols and guidelines have been developed; strong links with community-based organisations have been forged. That is what is needed, he states. When the others argue that success has much to do with favourable circumstances that cannot necessarily be repeated in other hospital settings, Peter rises angrily from his chair and leaves the room. The unspoken opinion of some in the room is that Peter has gone overboard on this Aids thing. One must retain a sense of proportion after all.
Dealing with children who have Aids leaves us raw and edgy. Most of us want to do better than we are doing, but finding solutions that work and drumming up the energy to see things through when the demands are so great and when there is equivocation at the political level leave many of us irascible, combative or demoralised.
Most of us are not crusaders. Though we remain committed to the health of children, the challenges posed by childhood Aids may be too great for us ordinary, unexceptional people.
For professional reasons, the author wishes to remain anonymous