Last week we lost two of our longest surviving little veterans of AIDS. A little girl and boy, neither yet five years old died in our ward within two days of one another. We had known them for nearly four years. Vicky* had been living at Nazareth House, a home for AIDS orphans for the last year. Masi* lived with his grandmother.
Vicky died on Monday morning. She had had yet another chest infection and had been growing steadily weaker. We had expected her death. On the Friday morning a group of us went to Nazareth House to attend her funeral. It was simple service on a sad morning. Three of our nurses and the mother of another child carried Vicky's coffin to the hearse. I am sure that these women, like me, were saddened to think that we would never see this very special little girl grow up.
Masi died on the Wednesday morning. He had looked better the day before. He had shown some appetite for the first time in more than two weeks. But overnight he had developed severe diarrhoea and died because we could not maintain his hydration. His grandmother was very upset and sad. We discovered that the cause of much of her distress was that she did not have the money to pay for his funeral. The ward staff decided to help. We had raised funds by selling cool drinks and snacks at a 'carols by candlelight' event the previous December. It was decided that we would use this money to bury Masi.
We are privileged to have been able to care for these two little children for so long. Even though anti-retrovirals came to late for them, for four years we still managed to maintain their health as best we could. We delivered palliative care on a sliding scale: Intensively when it was needed and with a light hand at the end, so that we would not prolong a painful death.
When the time came to tell the sisters at Nazareth House that the end was near, it was in the knowledge that these children's guardians had come a long way with us. It was not necessary to explain that we had done all we could. They knew this.
We were very fortunate to have the opportunity come to love these children and to know those who loved them. It is easier to say goodbye when you can do it properly. It feels right that our loss is painful. We recognise the emotions we felt at the loss of loved ones in our own personal lives and we know what to do and how to mourn.
How hard it is when a previously unknown child is admitted to the ward overnight and dies before one can make a difference, or get to know the parents. Deaths such as these can lead to emotional 'burn out'. All too often this is the demoralising experience of hospital and children's wards where the care of children with HIV infection and AIDS is not delivered in continuity and where health care workers and families therefore never get to know one another.
After Vicky's funeral, despite our sadness, on the way back to the ward we told tales about this little girl who, in her particular way, had crept into our hearts. And we'll tell the same stories about Masi, who was so choosy about what he would eat, and so crazy about lollipops. One does that kind of thing when the person you have just buried was a beloved member of the family.
* Not their real names
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