Increase Paediatric Palliative Care in KZN, SA

Wow! How time has flown since we last spoke and how things have grown! The work of Umduduzi keeps growing from strength to strength with referral numbers increasing daily from both State and private. Luckily we are in the process of increasing our team which will help spread some of the workload and help us see even more patients. We have also been blessed with another new team member who is assisting with our bereavement work. Having the ability to provide additional support after the death of a loved one is invaluable and families are grateful for this. It is solely through your donation that a nurse and bereavement worker is being added to the team. Thank you!

Our play and stimulation programmes are a continual source of encouragement and support to our little ones who are in hospital for extended periods of time - some up to 9 months. Being able to do something "normal" in a sterile hospital environment that continually reminds them that they are sick, is proving more valuable than even we thought it would be. 

As the year moves on we’re starting to focus on an exciting new venture – a palliative care assessment centre. This will be a place where our long-term patients can come for regular pain and symptom assessment, alternative therapies like aromatherapy, and supportive counselling. Caregivers will also be given the opportunity for support groups, income generation, supportive counselling and some pampering. We envisage this becoming a centre of excellence where people interested in learning about palliative care can come. Watch this space! J

As I sign off I’d like to share the story of Baby Q. He was born with a severe cardiac problem in December 2016. Surgery was conducted in May 2017 but was unfortunately unsuccessful. Despite this though, Baby Q was not prepared to give up. Through Umduduzi’s involvement we have been able to control his pain (which was causing him huge distress), wean him off oxygen (which was preventing him from going home) and finally get him home. He has been at home with his family since 2^nd June. Although his long-term prognosis may not be good, he is currently a happy child at home receiving all the love and cuddles he deserves. For his mom, she actually gets to be a mom now. While in hospital she was unable to cuddle Baby Q because of all the monitors and drips that he was attached to. Now she gets to hold whenever she wants for as long as she wants.

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.