Increase Paediatric Palliative Care in KZN, SA

This year has started with a bang for the team at Umduduzi. We have already had over 100 new referrals. Last year, the team provided services to 403 new patients; that is an average of 33 new referrals a month. We were with over 200 families during the last days of their children’s lives, providing end-of-life care, psychosocial support and bereavement care.

People always ask, “how do you do what you do?”. For most, the thought of working with dying children and their families seems impossible. How can you be present at a time of such pain? For us, it is more a case of how can we not be there. I have often referred to the privilege we have as a palliative care team, to be a part of these families’ journeys; to be invited in and be present at one of the most unimaginably painful times. Being able to help a child have a “good death” and know that their family has all the care and support they need, helps us get up in the morning to do it again.

That said, our work is not easy. I recently met a mom whose 4-year-old son was diagnosed with a retinoblastoma (cancer of the eye). The family had agreed to an enucleation, which is a surgical procedure to remove the eyeball. At the time of diagnosis, the cancer had not spread, so surgery would have been curative. Unfortunately, there are many unscrupulous people in the world – the family was convinced by a “doctor” that this was an unnecessary procedure and that he could cure LS’s cancer. The family, desperate to save their child and his eyesight, found a way to raise the money that was required, R55 000 ($2919). They sold everything they owned, took loans (that they are not able to repay), did everything they could to get the money. This “doctor” convinced the family that the treatment LS would receive at the treating hospital would kill him and that the doctors don’t really care.

Unfortunately, this was a scam. We have had another patient who discovered the same “doctor” and refused to continue the treatment provided at the hospital. He unfortunately died because of it. LS’s cancer was not cured, it continued to grow. His eye started to protrude out of the socket and the mom came back to the treating hospital. At this stage, the cancer had spread to his brain – surgery was no longer an option and neither was chemotherapy. LS’s mom is understandably devastated, she is full of guilt and anger, and has accepted that she has to live with the consequences of her and the family’s actions.

What makes this situation even more devastating, is that LS is her fourth child. The other three have died – the first at 4 months old in a car accident, her second died at 14 months old from illness and she had a still birth at 8 months. Our job is difficult enough without people promising the world to desperate parents who have nothing, but find a way to raise the money to save their child. Together, the doctors at the treating hospital and the Umduduzi team, are investigating this “doctor” and we hope that justice will be served for all those he has cheated – cheated them out of their money and their children their lives.