Increase Paediatric Palliative Care in KZN, SA

It is hard to believe that we are already nearing the end of January 2022. It feels like yesterday the promise of 2021 was on the horizon only for the world to shut down because of COVID-19. What does 2022 hold?

As an organisation we spend a lot of time explaining that palliative care does not equate to end-of-life care.  Although many of the children we work with are terminally ill and do pass away, there are others that we are still providing comfort and support to.

We met CM in 2009 when he was 7 years old. CM has cerebral palsy (CP) and epilepsy. We were called to his base hospital because the doctors felt that he was nearing the end of his life. Due to his CP he had an unsafe swallow and was aspirating (getting liquid into his lungs) often when feeding. This lead to several pneumonias and the doctors felt that this particular pneumonia was not responding to treatment.  We met with CM’s mom and discussed what had been happening and what the doctors were concerned about. She was obviously devastated. With comfort being an integral part of palliative care, our focus went to that. We started some pain medicine (morphine) as well as something to help with CM’s spasms. The morphine assisted with his pain but also with his shortness of breath from the pneumonia. CM became stronger and we were able to get him home with a nasogastric tube (NGT) for feeding. There was obvious huge concern as the pneumonia had not yet resolved. We arranged a home suction machine for his mom to assist her with clearing his secretions because of his unsafe swallow.

It is now 2022 and CM has just turned 20 years old. He is a strapping young man, still with a NGT that the local clinic changes regularly for the family. In the last 13 years, CM has been hospitalised 3 times. One of these admissions was because the home suction machine had broken and he needed to be in hospital. A quick repair by the team and CM was back home. The other two hospitalisations were due to seizures. CM was growing and hence the dose of his epilepsy medicines were too low. Once these were adjusted CM was back home with his devoted mom and dad. CM is an adored child and we often get phone calls from his dad telling us that CM says hello. We always giggle a little as he is not verbal but know that this is the family’s way of thanking us again.

Palliative care is about quality of life, comfort and support. Many might say CM has no quality of life due to his underlying condition but a happier young man I am yet to meet and an absolutely dotting mom and dad.