UKZN’s palliative care team on international stage
The UKZN paediatric palliative care team has been closely involved with the International Children's Palliative Care Network and the UK based team in helping with the treatment and care of a young boy.
THE University of KwaZulu-Natal’s (UKZN) paediatric palliative care team under the leadership of Dr Julia Ambler were involved in discussions around the care of UK baby, Charlie Gard, who suffered from a rare condition.
The team was closely involved with the International Children's Palliative Care Network and the UK based team in helping with the treatment and care of Gard who sadly died on 28 July.
Charlie, who was born healthy on 4 August 2016, suffered from mitochondrial depletion syndrome which affects the genetic building blocks that give energy to cells. It causes progressive muscle weakness and brain damage. He is thought to only be the 16th person in the world diagnosed with the condition.
In April doctors were told they could move Charlie into palliative care. At the time, Gard’s parents were involved in a legal battle after judge ruled he must be allowed to die.
“The child had an incurable condition and scans showed that he had deteriorated further. He was on a ventilator being kept alive,” said Ambler.
She said his parents had gone to court requesting the child to be allowed to travel for experimental treatment but the court declined the application based on the belief that the child should be allowed to die and not be subjected to further pain and suffering.
“The parents finally withdrew their case and requested they be allowed to take the child home to die,” explained Ambler.
Ambler’s colleagues in the UK said that the case has been extremely difficult for all involved.
Ambler and her team will be co-hosting the 2018 International Children's Palliative Care Network Conference in Durban’s Elangeni Hotel.
