A
matter of life or death for babies
By Julie Robotham Medical Editor
Sydney Morning Herald
April 6, 2006
BABIES born at 23 weeks of pregnancy or earlier should usually be
allowed to die naturally, according to new state guidelines, while
those born at 24 weeks or later will generally be given intensive care
treatment.
Kei Lui, the chairman of the group of doctors, nurses and parents that
developed the recommendations, said the age thresholds would help
parents of extremely premature infants accept their situation, and
would support doctors when breaking the news that a child should not
receive life support.
But the guidelines did not mean treatment should automatically be
withheld from the tiniest babies, said Dr Lui, a senior lecturer in the
School of Women's and Children's Health at the University of NSW.
Individual decisions based on the child's medical condition and
consultation with parents were still necessary in every case, said Dr
Lui, who presented the document in Perth last night at the Annual
Congress of the Perinatal Society of Australia & New Zealand.
The recommendations are based on new research from NSW and the ACT
which shows the future is dire for most extremely preterm infants.
Between 1998 and 2001, 209 pregnancies ended at 23 weeks, of which only
89 babies were born alive. Half of them received intensive care
treatment but only 14 survived - and just four had no apparent
disability at age three. For infants born at this stage, the new
guidelines suggest "active [treatment] would be discussed, but would be
discouraged".
A handful of babies born at 22 weeks have been treated in NSW neonatal
intensive care units, but none has survived.
For those born at 25 weeks, the picture is significantly better with
two-thirds born alive, and two-thirds of those surviving to go home.
Most have no obvious disability.
Dr Lui, who is also director of newborn care at Sydney's Royal Hospital
for Women, said there was a "grey zone" between 23 and 25 weeks of
pregnancy during which there was "an increasing obligation to treat".
"At 24 weeks we'd recommend transfer to a specialist centre [before
birth], but there can still be an option of non-intervention," he said.
In the Netherlands, babies born below 25 weeks do not usually receive
treatment, while a British bioethics committee is considering a 24-week
limit and expects to report later this year. International research
shows that on average parents want more to be done to save their child
than healthcare professionals think reasonable.
David Henderson-Smart, director of the NSW Perinatal Services Network,
said the guidelines would form the basis of leaflets to be distributed
to all women at risk of premature delivery, ensuring they received
consistent information.
Merrilyn Walton, associate professor of ethical practice at the
University of Sydney, said the guidelines would assist rational
decision-making. "There's lots in medicine that can be done, but should
it be done?" she said. In addition to their own suffering, saving
babies who would be seriously disabled "can have catastrophic effects
on families down the track", she said.
Janet Carey, national executive, research and programs, for the charity
SIDS and Kids, said the recommendations could help parents reconcile
the decision to refuse life support. "When your child dies before you,
you always feel guilty, even if irrationally so," she said. "If you've
got a guideline, that takes away responsibility from the parent to some
extent."