Zimkhita was a 15 year old girl who was refered 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.