When palliative care was first suggested for her daughter, Fikile was doubtful. She associated the word “hospice” with the end of life and wondered whether it was the right place for her child.

Luloyamo Matsinye, known as Lulo, was born with Edwards syndrome, or trisomy 18, a condition that affects the development of the body’s major organs. She was born with two holes in her heart, an underdeveloped brain and a curved palate.

Her early years involved repeated hospital visits. At the age of five, Lulo began having seizures because her body struggled to regulate its temperature. As the seizures worsened, delays in getting her to hospital led to paralysis on the left side of her body.

Caring for Lulo had also taken a toll on Fikile. Her daughter seldom slept for more than two hours at a time and, after months of broken nights, Fikile was exhausted.

It was during this period that she was introduced to Stepping Stone Hospice, a member of the Association of Palliative Care Centres (APCC). Fikile worried that accepting help would mean giving up, but the team assured her that Lulo would always have a place with them. She described that reassurance as deeply moving and said her faith helped her make the decision.

Lulo was diagnosed with Trisomy 18 (Edward’s syndrome) at birth

First child admitted to the unit

Stepping Stone had opened its dedicated children’s inpatient unit earlier in 2024. On 19 November, seven-year-old Lulo became the first child admitted.

The organisation was already caring for children through its other services, and some had previously been accommodated in the adult unit. The new unit was developed around the needs of children with life-limiting conditions.

Children require a different approach to care, Care Services Manager Sr Margi Bollman explained.

“They often can’t tell you what’s wrong, and they can’t tell you when they are in pain,” she said.

Almost two years after Lulo’s admission, Fikile says her daughter is still treated with the same affection she received when she first arrived.

Lulo has settled into a routine at the unit. She wakes, sings and eats before getting on with her day. She rolls around with the other children and lies beside them as a toddler would with her playmates. She also enjoys assisted swimming.

Her family remains closely involved. Visits include quiet time together and card games on the bed, with her mother and siblings nearby.

Knowing that Lulo is safe has also allowed Fikile to get some much-needed rest. After the admission, she messaged the Stepping Stone team that she would sleep well that night because her daughter was in safe hands.

Quality of life

Palliative care has not changed Lulo’s diagnosis or prognosis, but it has given her quality of life and her mother peace of mind.

Fikile’s early uncertainty is one that APCC member organisations encounter across South Africa. The belief that palliative care is only relevant at the end of life can prevent families from seeking support, particularly when the patient is a child.

Nearly two years after Lulo became the unit’s first patient, Fikile describes the decision to take her to Stepping Stone as one of the best she could have made. Her daughter’s days now include singing, swimming, playing with other children and spending time with her family.

 Image and copy provided by the Association of Palliative Care Centres (APCC)