Born with deafness, blindness and disability: We need to remember the 'rubella babies'.

We don’t hear a lot about rubella these days. It’s just the R in the MMR vaccine.

But just a few decades ago, it was a word that was terrifying to pregnant women. If they caught rubella – also known as German measles – in their first three months of pregnancy, they had an 80 per cent chance of miscarrying or having a baby with birth defects.

It was back in the 1940s that a Sydney ophthalmologist, Dr Norman Gregg, became concerned about the high number of babies being brought to see him with cataracts. He heard two mums sitting outside his office discussing how they’d both had German measles when they were pregnant.

Looking into it, he found that nearly all the babies with cataracts had mothers who’d caught rubella in their first trimester. He also noticed that these rubella babies had other things in common. A lot of them had heart defects and were “of small size, ill nourished and difficult to feed”. Many were also deaf.

It was during WWII, and Sydney was experiencing an epidemic of rubella, which had begun among soldiers in army camps and spread into the rest of the community.

The Quicky explores the latest anti-vax movement. Post continues after podcast.

Dr Gregg gathered his evidence about the effects of rubella on unborn children and presented it to an international meeting of eye surgeons. Many of the overseas surgeons doubted him, but eventually they had to accept that this Australian had made a major breakthrough. It would be another two decades, though, before a vaccine came along.

From 1963 to 1965, a rubella epidemic swept across the US. In that time, 20,000 babies were born with congenital rubella syndrome, not counting the many thousands lost to miscarriage and stillbirth. Those 20,000 rubella babies faced a lifetime of problems: blindness, deafness, heart disease, intellectual disabilities and autism.

As the number of rubella babies grew, pregnant women realised what they were facing: giving birth to children who may need around-the-clock care for the rest of their lives. Dr Gregg was quoted as saying that he “would not allow the pregnancy to continue if the circumstances arose in my own family”.

Although abortion was largely illegal in the US, some doctors began offering it to pregnant women who had contracted rubella.

Wealthy women who weren’t offered the option were able to fly to Mexico or the UK for the procedure. Other women, whose had their request for an abortion denied and gave birth to severely disabled babies, took their cases to court. Ultimately, the open discussion about rubella and abortion helped pave the way for the 1973 Roe v Wade case that legalised abortion in the US.

Florence Woodford was one of the pregnant women offered an abortion in the early 1960s after contracting rubella. But being a devout Catholic, she decided to keep her baby. Kim was born with cataracts, and Florence tells CNN that she rejoiced at first.

“’Oh, that’s wonderful. That’ll be OK. We could fix that,’” Florence remembers thinking. “And then as time went on, we found out it was a lot more than that.”

It turned out that Kim was not just legally blind, but also completely deaf. She needed heart surgery as a child. As she grew older, it became clear that she was intellectually disabled, and had behaviour disorders and autistic tendencies.

She was fortunate enough to go to a special school for children with congenital rubella syndrome, but her childhood was not an easy one – and it wasn’t easy for her siblings and parents either, who had to deal with her anger and violence.

“I wouldn’t wish it on anybody with what she was like,” Florence tells CNN. “There are not a lot of happy memories.”

As Kim reached her twenties, her parents banded together with other parents of rubella babies. They fought to give their adult children somewhere to live. Kim, now in her fifties, lives in a group home. She can’t speak, she needs to be watched when she eats so that she won’t choke, and she finds it increasingly hard to walk. But she’s well looked after.

By the end of the 1960s, a vaccine for rubella had been developed.

In Australia, schoolgirls began being vaccinated against rubella in 1971. But it wasn’t enough.

The disease was still spreading, with thousands of cases in Australia every year. The decision was made to vaccinate babies against rubella instead of schoolgirls, and in 1989, the MMR (measles-mumps-rubella) vaccine was introduced.

The vaccination program has been an incredible success. The World Health Organization declared late last year that Australia has officially eliminated rubella.

This is what former Prime Minister Malcolm Turnbull had to say to Mia Freedman about anti-vaxxers:

“Although they had coped with their disabilities much better than predicted,” the researchers found, “they expressed satisfaction that rubella vaccination means that today’s young Australians do not have to cope with the problems they had to overcome.”

With misinformation about the MMR vaccine putting some parents off getting their babies vaccinated, there’s been a surge recently in measles cases across Europe and in other parts of the world.

As the University of Brighton’s Sarah Pitt points out, the measles outbreaks have been getting a lot of publicity. But there have also been a few cases of babies born with congenital rubella syndrome in the UK.

Let’s learn from the past. Let’s remember the rubella babies next time someone tries to suggest that the MMR vaccine isn’t necessary.

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