Rise in Down syndrome babies blamed on lack of screening

More New Zealand babies are being born with Down syndrome, despite improvements in prenatal testing technology.

Numbers rose from 50 in 1996 to 80 in 2002, and experts blame the lack of a co-ordinated national screening programme.

"We don't have a screening programme in NZ and what we are doing at the moment is ad hoc," said Professor Peter Stone, head of the University of Auckland's department of obstetrics and gynaecology.

"We haven't really embraced it as a health issue for the population at risk, which is all pregnant women."

Professor Stone was commissioned by the Ministry of Heath's National Screening Unit to determine how antenatal screening for Down syndrome should be done, following a workshop in April 2004.

The workshop found antenatal screening "was not effective or sustainable" and had developed haphazardly with no co-ordination, no audit and no quality control.

"It appears that the vast majority of women are not being offered screening," the workshop reported.

Ministry statistics confirm the claims. In 1996, the number of Down's babies per 1000 births was 0.87. By 2002, the incidence had risen to 1.48. The natural incidence of Down syndrome - if there are no terminations - is 1.67 per 1000 births.

Professor Stone, whose report is due at the end of the year, is unable to shed any light on why screening is such a shambles.

He pointed out that one ultrasound test, done from 10 weeks into pregnancy, was partially Government funded. "I don't know how it is that a test can be introduced with funding, but not be introduced as part of a co-ordinated approach."

Another maternal serum test was originally funded, but now costs $75, meaning few mothers have it done.

Dr Pat Tuohy, chief adviser on child and youth health, said the ministry was reviewing the funding of maternity care which was an opportunity to address the quality and safety of ultrasound scanning and other issues relating to screening.

But if a more co-ordinated programme is introduced that has the effect of reducing the incidence of Down's, it might conflict with the views of some disability groups concerned about efforts to remove imperfection. The Down Syndrome Association's position statement on prenatal testing says people with Down syndrome have a right to life.

It advocates that testing be used to prepare parents for birth, that up-to-date information should be available to the professionals involved, and that people should not be pressured into having testing.