UKZN’s paediatrics on international Stage

Connie Yates and Chris Gard with their son Charlie, who was born healthy in August last year

The UKZN’s paediatric palliative care team under the leadership of Dr Julia Ambler has been involved in discussions around the care of a UK baby, Charlie Gard, with a rare condition.

The 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 Gard.

Charlie, who was born on 4 August 2016, has a disorder called 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.

According to BBC News, specialists at Great Ormond Street say eight-month-old Gard is unable to move and has significant irreversible brain damage. In April doctors were told they could move Charlie into palliative care. Gard’s parents have been involved in a legal battles after judge ruled he must be allowed to die.

‘The child has an incurable condition and recent scans show that he has deteriorated further. He is on a ventilator being kept alive,’ said Ambler.

She said his parents have 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 subjected to further pain and suffering.

‘The parents have now withdrawn their case and would like to take the child home to die. For reasons not disclosed to the public the court has ruled that the child should be extubated in hospice or home,’ explained Ambler.

Ambler’s colleagues in the UK said that the whole case has been extremely difficult for all involved and not all the details can be released to protect the child and family’s confidentiality.

‘There is not much more that can be offered to this child,’ she said.

Ambler and her team will be co-hosting the 2018 International Children’s Palliative Care Network Conference in Durban’s Elangeni Hotel.