Letting nature take its course

Pauline Thiele with her husband Rod and their children Joel, 7, and Jordyn, 2.
Pauline Thiele with her husband Rod and their children Joel, 7, and Jordyn, 2. Photo: Wayne Taylor

Pauline Thiele was still celebrating her second pregnancy at 18 weeks when she received a startling call from her obstetrician.

A screening test suggested her baby was at high risk of Edward's syndrome, or trisomy 18, a chromosomal disorder that is fatal for most infants in the womb or their first year.

The doctor told her to come in for more tests the next day, where an ultrasound confirmed her worst fears. Her unborn child had trisomy 18 and spina bifida, a birth defect that affects the spine.

She knew most women terminated such pregnancies, but as her baby moved inside her, she couldn't bear the idea of ending it all.

''My heart told me that what was best for us all was to love this precious baby and give him or her every possible opportunity of life,'' she said.

The unusual decision appeared to take her obstetrician by surprise, and what followed revealed gaping holes in Australia's health system for women choosing to continue pregnancies with such diagnoses.

Every year, about 7000 women in Australia are told their foetus has a severe and lethal condition. Diagnoses include trisomy 18, hypoplastic left heart syndrome, and trisomy 13, or Patau syndrome.

While most women abort these pregnancies, specialists say a small but increasing number want to let nature take its course. For some, religion is a driving factor, but for many the hope of meeting their baby alive, even if only for a few minutes or hours, is worth the pain of continuing a pregnancy with so much uncertainty.

But specialists working in the field say most hospitals are not prepared for such women and the palliative care that may be required. There are difficult questions about how the baby will be born and whether they will receive life-prolonging treatments or strong painkillers that may hasten their death.

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Mrs Thiele's experience at a Melbourne hospital in 2009 was a study in chaos and suffering. After telling her obstetrician she wanted to continue her pregnancy, he offered little information about what the conditions meant. When she asked if she could have a caesarean to minimise distress for her unborn son Liam - a choice that could also maximise his chance of living - the idea was dismissed.

Then, during visits to the hospital where Liam was to be born, Mrs Thiele was horrified to find her file had few details in it, just a few scrawled notes. ''Did these professionals believe I should have terminated, as some people suggested behind my back?'' she wondered.

Then came a final blow. Despite wishing for her son to receive palliative care so he could die peacefully, the hospital's lawyers refused to allow his delivery there. There was a view the administration of morphine to a newborn to relieve pain could be considered murder.

As it turned out, at 36 weeks, Liam's heart stopped beating and he was delivered swiftly the next day. For hours, Mrs Thiele admired her tiny son and whispered words of love to him. In contrast to the images she had seen of babies with his conditions online, he looked perfect.

Despite feeling abandoned by many health professionals, Mrs Thiele said a paediatrician did all the right things when Liam arrived. Cradling the infant in his arms, he told her that if Liam could feel stress in utero, he must have felt her love as well.

''Those words made the whole experience worth the heartache,'' she said.

Four years on, Mrs Thiele will be speaking to a meeting of health professionals to help them understand the needs of women like her.

In what is believed to be the first conference dedicated to perinatal palliative care in Australasia, experts will discuss the ad hoc care currently being provided to women and examine how they can do better.

Professor Dominic Wilkinson of the Women's and Children's Hospital, Adelaide, said changing demographics, including a trend towards older motherhood, meant hospitals needed to be prepared for more women like Mrs Thiele.

''The health care system really has not been set up for supporting these women and their families,'' he said.