Increase Paediatric Palliative Care in KZN, SA

I cannot believe that we are already at the end of 2023. This year has flown by. As an organisation we have been privileged to walk alongside over 400 children and their families this year. A truly remarkable achievement.

During the course of this year we have increased our clinical team with 4 retired nurses, as well as employ a High Level Administrator to assist with some of the administration and fundraising tasks, thus allowing Dr Ambler and myself to give more time to clinical work. This has been due to more regular income and the incredible support from all of you donating through GlobalGiving.

As I sit thinking about all that has been achieved this year, I am also struck by the number of families we have worked with who did not get to celebrate the festive season with their children. I am often overwhelmed at their strength and resilience and despite the huge tragedy they have faced, they still think of us and wish us and our families.

For us as a team, we will remember 2023 for all the beautiful children who blessed our lives and their amazing families. One such child is Baby M. Baby M was born with a serious genetic condition, Trisomy 8. Majority of children with this condition do not live longer than 3 months. Baby M’s parents were absolutely incredible. Although they knew the severity of her condition and that she might not have a long life, there was nothing that they did not do for her or try and provide for her. Their tiny one-roomed home was filled with so many beautiful baby accessories, toys and one could feel the overflowing love and devotion. Baby M was a true miracle baby and through her devoted parents ensuring she could be the best she could be, Baby M lived with her condition for over a year.

As a team we are often invited to celebrate our children’s lives at their funerals, but it is not always possible for us to attend every one. Baby M’s funeral was very close to one of the hospitals we work in and we managed to get to join her incredible parents and their family in celebrating her life. One of the things that sits with us and humbles us, was the level of gratitude and love the whole family had for the Umduduzi team. We are so often the bearers of difficult news and the providers of comfort in devastating circumstances. This is what we have chosen to do to ensure that every child we meet with a life-limiting or life-threatening illness has the best possible quality of life in the time that they have. We are therefore incredibly humbled when so much gratitude is given to us; we were just doing our jobs, jobs that we love and would never change.

To all the Baby M’s we met this year, thank you for blessing our lives and thank you to your families for letting us walk your journey with you. As we enter 2024 we hope to make a difference in many more lives. We wish you all a peaceful and blessed 2024. Thank you for all your support.

It is difficult to believe that we are already in the second half of 2023. While time seems to be flying for many of our parents the year has been a long one. Months of hospital stays being away from their families and other children can make time seem like it is standing still.

One of these moms has been in hospital since before her baby was born – 5 months. Diagnosed with many complications during a routine scan NK was admitted to the quaternary hospital in KZN awaiting her baby’s birth. This was obviously an incredibly difficult time for her filled with anxiety and fear. Being from a rural part of KZN far away from the hospital, NK had no physical contact with family or friends. Our team got to know NK before the birth of her baby boy. This was an opportunity for us to provide her with the much needed comfort and compassion she needed as well as the opportunity to talk through her fears. It also allowed us to talk with her about how much she would like the doctors to do for her baby given the numerous complications that were discovered during her scans.

The doctors decided that it would be better for NK to have a caesarean section (CS) as they didn’t want the baby to “work too hard” through a natural delivery. This caused more stress for NK as she didn’t want to have to be in her ward while her baby was in the Neonatal ICU (NICU). The CS went well and NK recovered quite quickly. Her baby born was rushed to the NICU and assessed. Many of the complications that were seen in the scan seemed to be present. He was unable to swallow on his own due to “weak muscles” (myopathy) and thus feeding was an issue. Breathing was also a problem because of the myopathy.

Due to the team having had time with NK she was prepared for these problems and had an idea of how much she was prepared to allow the doctors to do. She was prepared for the gastrostomy (a tube into the stomach to feed the baby). She had agreed that she didn’t want her son to be put on a ventilator as she understood that the myopathy cannot be changed and if he is put on a ventilator she will never get to take him home.

Through the team NK has been prepared for whatever journey awaits her son. She has learnt how to position him to help with the breathing and how to feed him with the gastrostomy. She will soon be going home. NK is also prepared that her son will not have a long life but she feels that the time they have together at home is something she will treasure.

Palliative care is not only about end-of-life, it is about quality of life, choices and control, and being prepared for whatever happens. It is about support, compassion and empathy from diagnosis to whatever the outcome is. As the Umduduzi team we are privileged and grateful for the opportunity to walk with these families and provide them with the care and support they so desperately need.