Author: Dr Julia Ambler
“Look how well she is doing doctor!” Wonder’s mother proudly announces as we enter the tiny one-room wooden structure called home. Wonder was recently discharged from hospital having been diagnosed with a rare developmental disorder – Cornelia de Lange syndrome. Unfortunately, it has caused an inoperable heart problem and significant physical abnormalities. At one stage we didn’t think she would ever leave hospital and now she is nearly 3 months old. The reason for the home visit was in part to continue the physical, emotional and spiritual support that is palliative care, but on this day we were able to deliver a substantial food parcel as well.
Poverty afflicts much of our country; unemployment rates are very high and the cost of living rises steadily. COVID has further caused multiple job losses over and above the loss of life. And while Umduduzi – Hospice Care for Children is a children’s palliative care service, many of our patients and families are literally struggling to put food on their tables.
Most of our patients are seen during admission to one of the 9 state hospitals we service or in the outpatient clinics. However, there are a number who are not well enough to make the trip and when we have very heavy food parcels to deliver we will visit them at home.
Next stop, Wandile’s home in a peri-urban area, Umzinyathi. Wandile is an 11-year-old boy with a para-spinal leiomyosarcoma (a muscle cancer) that has compressed his spinal cord and left him completely bed-ridden.
Unfortunately, the tumour did not respond to treatment and he is now at home waiting for what comes. We have managed to control his pain very well on a regime of strong medications but feel powerless to help him with his emotional pain and boredom. He has no independence and with such limited mobility he cannot attend school or go outside to play with friends. We have provided a variety of books, toys and movies for his laptop gifted by Reach for a Dream, but all he wants is to be a normal boy again. We leave his home heavy hearted, comforted only by the knowledge they have food for a month.
Further inland, Sihle runs out to greet us, only to regret it a minute later when he is coughing and short of breath. I carry him back inside and gently put him on the double bed that the whole family of 4 shares. 2 years ago at the age of 5, he was diagnosed with Dilated Cardiomyopathy and heart failure.
His younger brother, Siyanda died with the same problem just over a year ago. Constantly surprised by his strength and resilience, he has been back to school since his last exacerbation of heart failure a month ago, when he was hospitalised for about 3 weeks. It is a long walk to school and he has to take it very slowly but his mother says she cannot stop him. He takes heart failure medication every day along with a regular dose of morphine which relieves his chest pain and shortness of breath. When it is bad, his mother increases the dose until he is relieved. She is still grieving Siyanda and now preparing to lose Sihle as well. We sit quietly together while Sihle heads off to build Lego in the other room. Tears stream down her tired face. There is little to say; she knows it all only too well. She can see his condition deteriorating and can only pray. “only God knows doctor, only God knows.”
We see 3 more children that day and finally head home. Physically tired but emotionally exhausted. So grateful we could support them at least with love, advice and of course, food. People always ask, “how do you do your job?” The answer is easy.
It is an enormous privilege to walk this most difficult road with these families knowing that even if we cannot change the outcome, we can provide care and support along the way, to make what time they have together as a family meaningful and to ensure that they are never alone. Making that difference every day in families’ lives helps us get up in the morning to do it all again.