A woman whose son was born with birth defects after taking a hormone-based pregnancy test is demanding answers.

Robyn Hughes, 63, is the first New Zealand woman to publicly share her story after new evidence from Britain this month, which showed women who took the hormone-based pill Primodos had a higher chance of having children with severe deformities or other serious health problems.

Her son was born premature and with tracheostenosis - the narrowing of the trachea.

The Tauranga woman says she was prescribed a hormone-based pregnancy testing pill when she fell pregnant in 1977 - two years after the Government ordered products of that type to be pulled from the market.


When she read about the allegations surrounding Primodos this month, everything clicked.

"It was a surprise to me to learn about that drug."

She can't remember the name of the particular drug she was given or how many tablets she had to take, but she recalls being told that if she bled she was not pregnant and if she didn't bleed she was pregnant.

Her son's breathing problem was misdiagnosed for eight years.

"I was told he had a floppy larynx. He was a very sick little boy," she told the Herald.

When he was 8 he was diagnosed with tracheostenosis - the narrowing of the trachea.

"His wind pipe narrowed down to the extent that he was barely able to get air into his lungs or out of his lungs," Hughes said.

A year later he had surgery to correct it.


She has since learned that unborn babies develop their oesophagus and windpipe at about four to six weeks - about the time she took the drug.

"I think I'm more angry than shocked and upset. I want answers," she said.

"I think the only way we're going to get these answers is if the Government does the right thing and forms a working group to investigate it."

Last week Medsafe confirmed the Department of Health, as it was then known, issued a letter ordering the withdrawal of hormone-based pregnancy testing drugs from the market in May 1975.

Hughes wants to know what the Government did to make sure the drug was pulled after the directive was issued.

"I would question how they were told not to. What I'm hearing from Medsafe is the company, Schering, was told to take it off the market. What follow-up happened? What communication did they have with the pharmacies and the distributors?"

She has spoken to Medsafe about her experience and lodged an adverse reaction report with the Centre for Adverse Reactions Monitoring and is calling on other women to come forward.

She has started up a closed Facebook group called Primodos NZ to allow women who took the drug to connect, support each other and seek answers from the Government.

Medsafe general manager Chris James said he was unable to talk about specific cases, but the agency was taking any possible complaints "extremely seriously".

Women who believe they may have been prescribed hormone pregnancy tests such as Primodos are encouraged to come forward, and if appropriate are referred to the Centre for Adverse Reactions Monitoring based in Dunedin, he said last night.

"To date, a total of six instances where Primodos may have been used have been reported to Carm. Unfortunately because of the length of time now elapsed the reports have little confirmed detail - including whether Primodos was actually taken."

Based on information from Bayer, the company which bought out Primodos manufacturer Schering, the medicine was available in New Zealand from 1966 to June 1975 when it was withdrawn from pharmacies.

Medsafe said it had established that general practices and pharmacies were alerted via a clinical newsletter issued by the Department of Health in 1975. Pharmacies were also notified via the company's recall of the product.


• Primodos, a pregnancy-test pill, was introduced in 1958 in Britain and was on the market for 20 years.
• It contained strong hormones which were later used in the morning-after pill.
• Archived German documents exposed by British media this month drew a connection between Primodos and birth defects
• Women who took the drug were found to have a five-to-one risk of giving birth to a child with malformations
• The first mention of Primodos in New Zealand was in New Ethicals in 1966.
• Primodos was distributed by Schering in New Zealand from 1966.
• It was banned here in 1975, taking effect from June 9.