Story by Megan Rich
Specialised medical care for children can be difficult to find and for families involved, this can result in trying times. Umduduzi helps to provide a better quality of life for children who have serious illnesses by giving them the best possible care and comfort.
Founded in December 2012 by Dr Julia Ambler and Tracey Brand, the non-profit is the only palliative care service of this kind for children in Durban and one of very few in the country. “Our goal is different from the average doctor, who is there to cure a child. Our purpose is to make the children’s lives better, regardless of what happens in the end,” explains Julia, the Deputy Director and Palliative Care Specialist.
That means offering care for children from a few months old to 18 years, who face a range of different illnesses, from cancer to birth defects and cardiac, neurological and kidney diseases. Their support includes advice on pain control and other symptoms, counselling for children and families, and home visits. Above all, they treat children as people, not just patients, instilling a sense of self-worth and dignity.
Children are referred to Umduduzi by local hospitals that aren’t equipped or don’t have the capacity to properly support them in their life-limiting illnesses once they’ve been discharged from the hospital, which can be a very traumatic ordeal for all involved.
To help create a bridge between the home and the hospital, Julia explains how Umduduzi have “spent years building up a network of hospices that will care for the children”. This means that when children return to their home town they’re already linked into a local home-based care programme, while still receiving guidance from the Umduduzi team.
A big part of what the non-profit does is broker relationships between parents and child, helping facilitate the emotional healing process and ensuring that the family has had the opportunity to make decisions together, like how death might happen.
“Very often, parents want to protect their child from the truth, but it doesn’t work because children are just too clever and we always underestimate them. We wrongly assume that they haven’t noticed what’s happening and they very quickly recognise that their illness is not a conversation that they can have with their parents. This then isolates them with the problem,” explains Julia.
Tracey and Julia admit that their jobs can be both rewarding and heartbreaking. For Tracey, as Director and Palliative Care Social Worker, heartbreak comes “when we haven’t had enough time to prepare the family or administer proper pain and symptom control”.
“We have to be very realistic about what we do,” Julia explains. “It is difficult and it will take its toll. Luckily, we have each other so we’re never really alone. It’s also important to ensure that you’re careful and take care of yourself, and have family time. We also feel nothing about going to a psychologist for a bit of support. It’s really something all healthcare professionals should be doing.”
As a solely donor-based organisation, Umduduzi relies on donations to pay salaries for the professional staff, to provide the quality medical and psychosocial support. As death and suffering is such a sensitive topic, it can be difficult to find funds but in reality “in every community, someone has lost a child. Even for adults, we like to pretend it doesn’t happen, yet it’s the only sure thing,” Julia continues.
Tracey believes that “if we prepare the family, provide good pain and symptom control and make sure the child is as comfortable as possible, then we’ve done what we have set out to do. And then we get up tomorrow because there’s another family.”
For info on Umduduzi or to help support the work they do, visit www.umduduzi.co.za