Zimkhita was a 15 year old girl referred to us by the Paediatric Surgeons at Red Cross Children’s hospital. She had a rare condition called degenerative leiomyopathy which is a disease of unknown cause where the smooth muscle in the intestinal and urinary systems undergoes progressive degeneration. This leads to intestinal obstruction, malabsorption and urinary problems. There is unfortunately no cure (even bowel transplant in the developed world has not been successful) and she was unfortunatey not a candidate for long term home feeding with intravenous feeds.
The Paedspal team worked with the Red Cross Paeds Surgical and Pain management teams as well as Art Therapist Angela Rackshaw to make some difficult decisions and to plan for care closer to home.
Symptom control was complex given the the absoption problems and side effects of morphine on the bowel. We managed to secure Fentanyl patches and Octreotide for use at home and also came up with an advance care plan that was used by Helderberg Hospice who provided end of life care in their in-patient unit which was closer to home for the family.
Other interventions included a home visit, family counselling sessions, party in the surgical ward, assistance with body image issues and pre-bereavement/memory work with mom and daughter. We also attended her funeral.
Parusia Muhugirwa is 13, and in early 2021 she became the first child patient at Red Cross War Memorial Children’s Hospital in 13 years to have a heart transplant. Parusia’s heart condition, dilated cardiomyopathy, had left her debilitated and becoming increasingly ill and weak in the years leading up to the transplant. She was referred to Paedspal for extra support for herself and also for her family. Parusia’s home language is French but she speaks fluent English and has become the unofficial translator for her mother Ginette. Despite her illness, she is an excellent student at her school as well.
Parusia was up and about within three days of her surgery and has continued to do extremely well. Within ten days, she was able to be discharged.
Parusia’s story shows that palliative care is not just about end of life. While she has excellent medical care and support at Red Cross, she was offered extra medical counselling by Paedspal, as well as getting music therapy. Parusia wrote songs about her life, hopes and dreams, with our music therapists, both before and after her surgery. She also received aromatherapy massage to help her cope with pain and discomfort in bed and to help with sleep and stress. Paedspal continues to walk the journey with Parusia, as does the transport team Footprints4Sam whose minibuses are Parusia’s safe transport to and from Red Cross for her frequent appointments.
A letter of thanks from Liyema’s mother
Liyema and his mother Patricia
My name is Patricia Morgweni and my son Liyema is 16 years old. He has a lifelong condition that means he can’t walk and he has other problems as part of that condition. Paedspal has made a big difference to our lives with the services they offer. We specially want to thank Footprints for Sam because the transport to Red Cross and to Paedspal has helped me so much. Otherwise I had to carry Liyema on my back when he had hospital appointments. He was embarrassed because he is a teenager. I am also grateful to Nompi who helps organise the transport for Liyema’s appointments
I think God has sent Paedspal to us. When I come to Paedspal, I feel less alone, I feel lighter, and I forget about my problems. I get a lot of support. Dr Tracey has explained Liyema’s illness to me so well, so now I fully understand what is wrong with him. I can ask her anything I want and she will explain. I can also speak to Di about my problems, and I have had help from Noncedo, the social worker. I can get a massage from Fiona to help my sore back and that makes me feel better too.
Liyema has had music therapy with Philna. He loves music and soccer – his two passions. So he really enjoyed his sessions with Philna.
Without Paedspal, I don’t know how I would be or where I would be.
I want to thank the funders and sponsors for everything they do to help Paedspal.