Edge of Life: mothers speak candidly about their premature babies

Janelle felt that at 22 weeks pregnant, everything was fine.

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She had bought a cot and a pram and was looking forward to the birth of her baby boy.

So when she drove to the hospital one morning because of a pain that kept coming and going, she thought the doctors would give her a Panadol and send her home.

“I drove myself there in labour and I didn’t know,” she said.

The doctors told Janelle and her husband Leslie that they were going to have a baby – and that it was going to be born very early and the prospects for her child were very grim.

“We made the decision not to resuscitate the baby, “ Janelle said.

“They were saying, you know, if he does survive … he won’t live a normal life.

“He will have significant disabilities.”

The couple had some 15 minutes to make their heartbreaking decision and they spent several precious hours with baby Max before he passed away.

“Your hearts says ‘what if?’ and, you know, when you then go on to meet other parents of extremely premature babies that have survived, it’s very hard because you feel … [he] could he have been the one in a million that proved them all wrong,”

Figures show that every year more than 2,000 Australian women give birth to extremely premature babies, who are born less than 28 weeks after gestation.  

Jenni had a similar experience to Janelle where she suddenly found herself in labour at 23 weeks with twins.

Despite the odds against her twin boys, Jenni and her husband Frazer wanted to resuscitate their children.

“We just said look, do everything you can.”

Baby Jack didn’t make it but his twin Flynn pulled through.

Flynn is now 12 and although fit and healthy, he suffers long-terms problems and could not speak until he was 10.

“We had a lot of scans and things done and it showed lesions on the cerebellum and brain injury,” Jenni said.

Flynn has been to China for stem cell treatment to help him speak and this has helped him interact with his parents through speech.

Bioethicist Francesca Minerva said the majority of parents don’t expect to give birth to premature babies and had to suddenly make these life changing decisions.

“Why don’t we start telling women who are pregnant around you know, 12-13 weeks that they should start thinking about this,” Ms Minerva said.

“Obviously, you don’t really want to upset people with these kind of thoughts but if you are prepared and you know there is a possibility that at 23-24 weeks you will have a baby, then you are informed.

“And you can give your consent in a different way.”

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