Unique centre for terminally ill children

2013-08-22 00:00

SHE has seen one too many children die traumatically when they should have been kept somewhere comfortable.

But Dr Julia Ambler (39), through the Umduduzi Hospice Care for Children, is slowly turning this around to give terminally ill children and their families peace of mind in those final days.

She runs the unique NGO in partnership with the Health Department at Durban’s Clairwood Hospital, where she has now taken a permanent post, hoping to integrate palliative care and hospice services into the state health system. She also lectures at the University of KwaZulu-Natal’s paediatric department.

Ambler completed her basic doctor’s training at the University of Cape Town and went overseas for six years to further her studies. That’s where she came across the concept of a hospice for children.

On her return home, she joined the Big Shoes Foundation, an organisation that provided medical care to children. The foundation had branches in Johannesburg, Cape Town and Durban, but had to shut down last year due to financial difficulties.

Ambler and Big Shoes Foundation regional manager Tracey Brand were left without jobs, but they refused to let go of their dream.

In January this year, Umduduzi (which means “comforter”), was born. And the NGO has already seen close to 100 children with advanced forms of cancer, neurological problems, congenital disease and heart deficiencies.

Once a hospital says there’s nothing more it can do, no one knows what they can do for the child and the family are sent home, Ambler explained.

“We’ve had cases where a child is sent home either with nothing for pain or with just Panado … Then a child gets sent back to hospital and dies a traumatic death, when they should have been kept somewhere comfortable,” she said.

The NGO offers counselling, holistic care, pain management, and helps families to make good choices about what happens in the end.

“We can’t change what is happening with the child, but we can change how it happens.”

Recently, a six-year-old died after being diagnosed with a brain tumour. The boy’s condition deteriorated and he was connected to many monitors.

But when the doctors knew he was dying, they disconnected the monitors and tubes, and let his mother hold him on her lap for about an hour.

“I think it’s about that … Obviously she’ll be traumatised by his death forever, but imagine if he would have died without her being able to touch him. Something as small as that, and she still calls and thanks me.”

Ambler says most of the children know they are going to die. Some tell her: “I think I’m going to die, but please don’t tell my mom. She’ll be upset.”

Children are also encouraged to work on memory boxes or letters for their siblings.

Ambler’s team also helps other public hospitals in the province when their assistance is called for.

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