A PIONEERING palliative care initiative for babies which aims to help give parents more control over their last moments with their child is being piloted in Lothian.
With ground-breaking medical advances being made all the time, more babies are being born extremely premature and often with a string of associated conditions which threaten their young lives.
Evelyn Rodger is among the three full-time Diana Children’s Nurses appointed across Scotland through the charity Children’s Hospice Association Scotland (CHAS), which is working with doctors and nurses to enhance the care of dying babies by offering more choice as to where and how care is offered.
The former neonatal nurse, who is based at the Simpsons maternity unit at the Edinburgh Royal Infirmary, said she is “passionate” about providing very sick young babies and their families with the same level of palliative care as adults and older children.
Ms Rodger, 47, of Greenbank, said: “It is really about offering them the same choices that adults, children and young people get.”
Babies are being born up to 17 weeks early and weighing as little as 1lb, forcing a change in the nature of neonatal care, Ms Rodger said.
Her role focuses on making sure parents know what options are available to them, and then supporting and facilitating these choices.
Parents may wish to take their child home to die if their condition allows, or to create memories in the short time they have such as creating footprint and handprint models or giving them a bath.
Ms Rodger said: “We are very keen on positive memory making, so we try to talk to parents to see what they would like to do with the remaining hours or days. My main concern is to say to them, ‘What would make this horrendous situation even the smallest bit better?’
“I had one family who just wanted to get their baby home, so we helped them do that with a ventilator. The baby died in mum and dad’s arms, which meant so much to them. It was very humbling.”
The babies can also be taken to CHAS hospices – Rachel House in Kinross, and Robin House in Balloch – or cared for by the community teams in their own homes.
Ms Rodger also works with pregnant mothers whose babies are not expected to survive and supports families after the death of their child.
The Diana Children’s Nurses will be officially announced today at the Children’s Palliative Care conference in Aberdeen.
Pat Carragher, medical director at CHAS, said: “Babies are often treated aggressively to try to save their lives but sometimes, sadly, that is no longer an appropriate course of action. The role of palliative care for children is unfortunately necessary. We see it as CHAS’s role to work alongside the doctors and families to support the care of their child.”
CHAS was awarded Holyrood funding to create and employ three full-time Diana Children’s Nurses posts for Scotland which commemorate the life of Diana, Princess of Wales.