UKZN Academics with a Passion for Paediatric Palliative Care
UKZN honorary lecturers in the Department of Paediatrics and Child Health, Dr Julia Ambler and Ms Tracey Brand are providing paediatric palliative care through their organisation Umduduzi Hospice Care for Children.
Umduduzi, established in 2013, is a non-profit organisation in KwaZulu-Natal offering compassion, dignity, relevant care and relief from discomfort and pain for children diagnosed with life-threatening or life-limiting conditions.
A qualified Medical doctor, Ambler spent six years in the United Kingdom where she was inspired to focus on paediatric palliative care as a general practitioner and a children’s hospice doctor at Helen and Douglas Houses in Oxford.
She serves as the Deputy Director and Head of clinical services at Umduduzi and also consults in children’s palliative care and trains health professionals and medical students. She has contributed chapters on paediatric and neonatal palliative care in five different textbooks and was instrumental in writing local clinical guidelines, the most recent involving care during COVID-19. As a communication skills expert, she is also a workshop facilitator for the Medical Protection Society.
Brand is an alumnus of UKZN with undergraduate and postgraduate qualifications in Social Work. Also the holder of a Postgraduate Diploma in Marriage and Counselling, she opened the Durban Branch of the Bigshoes Foundation in 2008 where she cultivated an interest in paediatric palliative care. Since then Brand has been involved in teaching and training doctors, nurses and social workers in paediatric palliative care and has designed course work material for the purpose. She also provides direct services to children and their families.
Umduduzi has been instrumental in reaching out to families in KwaZulu-Natal through the management of pain and symptoms in young children, while providing social, emotional and spiritual care and support for bereaved families. Umduduzi serves the community with compassion, dignity and relevant care and relief from discomfort and pain, with services offered through direct patient care, mentorship, empowerment of caregivers, training and advocacy.
Ben Hawkes was diagnosed with osteosarcoma (bone/tumour cancer) at the age of 10. He fought it bravely undergoing chemotherapy, limb salvage surgery and radiation therapy but a few months after treatment the cancer metastasized and was found in his lungs. After aggressive chemotherapy and radiation, his condition continued to deteriorate and Ben’s oncologist estimated he had only three days to live.
Ben’s mother Mrs Angela Hawkes takes up the story: ‘It was on the Saturday night that I got a phone call from one of the Umduduzi board members who had heard via a cousin about our son Ben’s story and told me about Umduduzi Children’s Palliative Care. All I remember saying was thank you but the oncologist had said Ben probably wouldn’t make it through the weekend.
‘Then the strangest thing happened, Ben started to seem like he was getting stronger and feeling better. I googled Umduduzi, found their contact details, emailed them at midnight and at 8am we received a phone call from Dr Ambler and she was at our house at 1pm that same day.
‘Dr Ambler talked to us about palliative care, what we could expect and a conversation about death. The most notable thing to come out of the chat was that one should never rely on timelines about the passing of a loved one as we found out with Ben living at home with us for almost another seven weeks. Dr Ambler advised us on what to expect in the dying stage, discussed extra pain medication to ensure Ben would be pain-free as much as possible and how we were all coping emotionally.’
‘Ben died peacefully at 2am in his bed at home surrounded by all those who love him. Those last seven weeks we had with our son were the most terrifying, heart-wrenching, but most special time and having the support of Umduduzi, helped us immensely. The grief of losing a loved one never goes away and I know, two years on that we still shed a tear almost every day but sharing Ben’s final moments at home as a family was and always will be very special.’
Said the Head of the Department of Paediatrics and Child Care, Professor Refiloe Masekela: ‘Umduduzi provides support and care for children and their families through the hospice and in-patient support as the only dedicated provider of paediatric palliative care in KwaZulu-Natal. Through their passion and compassion, they provide our “little” people with comfort and a voice.’
Ambler and Brand live in Durban with Ambler’s sons, Luke and Jack.
Words: MaryAnn Francis