Fed: Choices get tough for parents of very early babies

Advances in neonatal intensive care mean more, very premature babies are being kept alive, says Dr Janet Green, who says 250 children are born in Australia every year after just 24 weeks in the womb.

Up to half of such extremely premature babies now survived beyond three days with intense medical treatment, but their longer-term prognosis was usually not good and a majority faced a life of severe mental and physical disability.

"We've got this amazing technology, but there has been little improvement in the outcomes for these babies," says Dr Green, adding they often face several disabilities including blindness and severe cerebral palsy.

"Some families are willing to take on everything, and that's fantastic, but some families are not - it's all about informed decisions.

"It would be the hardest decision they would make in their life."

In late 2006, a consensus statement was issued by NSW perinatal practitioners which states in the "grey zone between 23 weeks and 25 weeks and six days gestation ... it is acceptable medical practice not to initiate intensive care ... if parents so wish after appropriate counselling".

There is otherwise no law requiring these babies to be resuscitated and treated, and parents can opt to not do so.

Dr Green says there is an emerging need for a mature discussion in the community - and in the mainstream press - about the issue of extreme prematurity.

She says media reports of "miracle babies" often focused solely on survival without including details of long-term disability, which could unfairly inflate the expectations of parents.

This was one of the chief concerns raised by more than 400 neonatal nurses who took part in a study conducted by Dr Green.

She says advances in intensive care would continue to improve the ability of doctors to keep these children alive.

Yet this did little to account for the weeks of development these babies had lost by not going even close to full term (37 to 42 weeks) in the womb.

"Every day that a baby can spend in the womb goes with huge benefits," she says.

Dr Green, who has worked in neonatal nursing for more than 20 years, is a senior lecturer in the Faculty of Nursing, Midwifery and Health at the University of Technology, Sydney.

She spoke on the issue of extreme prematurity during a public forum at the university late on Wednesday.