Umduduzi is a mobile hospital-based team. We see children in all the different hospitals within the eThekwini region and sometimes in their homes. We also provide telephonic consultation to the rest of the hospitals in KwaZulu-Natal. At present we do not have an office or a hospice building.
Umduduzi is an isiZulu word, meaning the comforter. Our goal is to ensure that children with serious illnesses and their families are comforted – physically, emotionally and spiritually. We have used the phrase ‘hospice care for children’ to indicate the kind of care we are offering. Although usually hospice care is provided in a hospice, we provide care in hospitals and at home.
The word palliative comes from the Latin word – pallium = cloak. The idea is that we ‘cloak’ symptoms that seriously ill patients experience. Picture yourself wrapped up in a comforting warm coat! What we actually do, is meet with the ill child and family and help them come to terms with the diagnosis and what the future holds. We listen a great deal to the fears and discomfort and try to find ways of relieving them. This could be through counselling, information giving, medications, difficult decision-making and when required, end of life care planning.
Here are two more formal definitions:
We see children aged 0 to 18 years old. We can even meet with pregnant parents that have been given a serious antenatal diagnosis such as genetic disorders or foetal anomalies.
By definition, any child with a serious life-threatening or life-limiting condition should have access to palliative care. Living with an illness and through the required treatments is enormously stressful and uncomfortable. Support and symptom relief should begin at the time of diagnosis, not only when medical treatments have failed or when a child is dying.
We have seen over 400 different conditions in the last 7 years! We see children with heart problems, kidney disease, liver failure, cancer, neurological disorders, infectious diseases, congenital or genetic problems and babies that are born too soon.
After we have made a thorough assessment of what the child and family needs, we assist where we can. For example, every parent has our cell phone number to make contact with us using call, text or WhatsApp. They might need advice on how much or which medication to give when the child’s condition changes; like when they are in pain. When we see the caregiver at home or at the hospital, they might have questions about their child’s current symptoms or about how they will cope in the future. Sometimes we just sit with a family while they try to process everything they have to go through. Other times we find that a family is struggling to buy groceries or pay a medical bill; we will link these families to other organisations that may be able to help.
When a family is facing serious illness and the possible death of their child, there is a great deal with which they have to cope. Firstly, there is the immediate crisis of dealing with the child’s physical and emotional symptoms during the diagnosis, hospitalisation and treatments, but thereafter we assist them to build resilience so that they have hope for the future and can find a way to rebuild their lives.
This number varies, but in 2019 we saw over 300 new children, over and above the children that are already registered with our service.
No. Some of the children we work with get better and are discharged from our service when they no longer require support. Others live with chronic illness which doesn’t necessarily get worse or better. Sadly, as many of the children referred have a very serious illness, we do see many deaths. From January to November 2019, 134 of our patients died.
We are completely donor funded so rely on donations to reimburse our professional staff. Unfortunately, given the laws around child protection and hospital access, visiting the children we see is not always possible. We do run two Play & Stimulation Programmes, Sithandeni and Ekhaya Lihle, which always welcome volunteers. Sithandeni is based at Prince Mysheni Memorial Hospital and Ekhaya Lihle at the Multi-Drug Resistant TB Ward at King Dinuzulu Hospital (KDH).
The work of children is play and play is an integral part of healing. Children who have to spend any length of time in hospital with nothing to do are at risk for delayed development and missing milestones. It is also the right of children to have access to play and education. Besides, being in hospital is very miserable and boring – not great quality of life. Structured play and educational activities have made a huge difference to relieve some of the suffering of these little ones. Palliative care is all about comfort, the relief of suffering and improved quality of life.