Increase Paediatric Palliative Care in KZN, SA

As the months roll on since we last spoke our service keeps growing. Referrals are on an up highlighting the recognition firstly for the need for palliative care and secondly for the organisation. Referrals are from both the State and private sectors with the range of disciplines referring growing. Patients from haematology, oncology, cardiology, neurology, renal, endocrine and those with congenital abnormalities have been referred.

One of our recent referrals is Baby D who was born with Trisomy 18. Unlike Trisomy 21 (Down Syndrome), Trisomy 18 is life-threatening due to the serious physical defects that are present. Baby D and her parents were referred to our team primarily to prepare them for her imminent death. She was oxygen dependent (as her lungs and heart have not developed properly) and she could not eat properly because she couldn't swallow safely. Discussions took place with her parents about what the goals of care should be as well as what they felt would be quality of life for them and Baby D. Through these discussions we were able to appeal to the primary treating team to assist us in getting Baby D home. Home oxygen was sourced and Baby D's mom was taught how to feed her through a nasogastric tube. Her pain management was optimised and Baby D was ready for home. After initially given a few days to live, Baby D has now been at home for 3 weeks. Although her life will be short, she has had a chance to see her home, meet her siblings and be an active part of her family’s life. This truly is palliative care in action.

As mentioned in our last report new projects are afoot. Our play programme at King Dinuzulu Hospital has begun. As things have progressed we have realised that this needs to be more of an education/stimulation project than a “play” programme. Children have to be in the TB ward for a minimum of 6 – 9 months. These causes havoc with their education. Although there is a school at the hospital it doesn’t cater for the non-school going aged children. We have therefore looked at creating an Early Childhood Development programme thus ensuring that the children remain up to date with their schooling and are prepared when they return to school. This is an exciting adventure for us. There is still a lot to do but we believe we are on the right track.