Increase Paediatric Palliative Care in KZN, SA

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.