Increase Paediatric Palliative Care in KZN, SA

Our work continues to grow and more lives are being touched. Since we last spoke our neonate referrals have been on the rise. The experience of neonatal palliative care is varied. At times we know the diagnosis prior to birth so we are able to be a support to the family prior to the birth of their baby and afterwards until the baby passes away. Many times however we are involved after the birth when the diagnosis is made. This is often more difficult as the family were not prepared for their baby to be sick and supporting them at this time is very complicated and emotionally draining. However, through our intervention these families have had, where possible, the opportunity to take their little ones home and to experience being parents even if it is only for a short time. 

A case that comes to mind is Baby S. He was diagnosed with (a rare congenital neurological disorder shortly after his birth. The family spent weeks in ICU not knowing that there was an opportunity for him to be at home, to be loved by his brother and other family members. Only the parents were allowed in his ICU room which was an incredibly lonely and difficult time. The family was referred to Umduduzi and we were able to talk through Baby S's prognosis and the importance for them to be a family for the short time he had. The family were obviously anxious and concerned especially around nursing care and monitoring as he had been watched 24 hours a day by a medical team. We spoke through all the possibilities, all the necessities and what would make them the most comfortable. The family were desperate to get him home and made the decision to take him. Baby S spent one glorious week at home with his parents, brother and grandparents and die peacefully in his dad's arms. “We never knew that we could have him at home. Despite there being nothing the medical team could do for him, we thought we were destined to spend what time he had in hospital. Without Umduduzi that would have happened” – Baby S’s dad.

Our play programmes continue to thrive. Unfortunately due to changes in the Department of Health’s vision, Clairwood Hospital has become a Kangaroo Mother site. This has meant that they are no longer admitting children so our programme has come to an end there after many years. All however is not lost and we have started a new programme at Prince Mshiyeni Hospital in Umlazi. This service has been well received by the staff and children alike. We look forward to this programme growing from strength to strength.

King Dinuzulu provides different challenges in that we are trying to focus more on an ECD programme. These little ones are away from home for a minimum of 9 months thus losing out on valuable socialisation as well as school readiness. Our co-ordinator there is working hard on these issues.

Without regular support from people like you this invaluable work would cease to exist. As a team we would like to thank you for your continued support and encouragement.