When Jennifer* fell pregnant for the first time in August 2019, there was no indication that anything was amiss. But the Melbourne-based healthcare worker was given bad news at her 12-week ultrasound scan: her foetus had a severe genetic condition.
“They detected a severe abnormality in the baby, which I already knew was a girl, so I’d already gotten a bit excited about having a daughter,” Jennifer recalls. “They said … essentially you could choose to bring the baby to term and give birth to her but if you do, she’ll be placed into palliative care immediately, so we’re recommending that you strongly consider a medical termination.”
Jennifer knew that a termination was the right choice for her: “It just felt ethically and morally cruel to bring a baby into the world knowing that it would not survive.”
Jennifer was receiving maternity care at the Mercy Hospital for Women, her local public hospital. A genetic counsellor there told her the hospital, which does not perform abortions for foetal anomalies due to its Catholic affiliation, would refer her elsewhere for the termination. The catch: she would have to wait five weeks to have the procedure at another public hospital.
“It was a torturous wait, that five weeks,” she says. “The thing I remember being most worried about was feeling the baby kick. I was just terrified of that real visceral sense that there was a living thing inside of me.
“I didn’t really know how complicated and convoluted that whole process would be.
“It was so hard, because you’re still pregnant … it was a really isolating experience.
“I was raised Catholic, so I know their stance on these things … but I guess when you think it’s a public hospital, there’s that sense that public hospitals care for you regardless of the condition that you’re in, so it hadn’t really crossed my mind that that barrier would apply to me. It was a shock.”
The Mercy is one of 15 Catholic public hospitals in Australia that are bound by a religious code of ethics prohibiting abortions, birth control and IVF. As Guardian Australia has reported, these hospitals – of which at least five offer maternity and gynaecology services – are able to deny women basic reproductive healthcare despite receiving public funding.
The Mercy will terminate pregnancies only in exceptional circumstances, such as when a woman’s life is at risk due to uterine infection. But it will not terminate pregnancies for other medical reasons, such as when a foetus has an anomaly considered incompatible with life – anencephaly, for example, where parts of the brain and skull are missing.
A small number of pregnant women are referred from the Mercy to other public hospitals in Melbourne every month for terminations due to foetal anomalies, according to a healthcare worker familiar with the situation – typically the Austin, the Northern, or the Royal Women’s hospitals.
“Most women never imagine that they will have a baby with a serious problem with its development. It’s not something to ever cross their minds, and then they have a scan and suddenly they’re in this whole other world, and the vast majority haven’t been told not to go to the Mercy – they just think it is their [local] public hospital,” they say.
Women for whom abnormalities are detected at a more advanced stage in their pregnancies – typically at 24 weeks’ gestation and after – may need to have a foeticide, a procedure to kill the foetus in utero, before being induced to deliver a stillborn.
“One of the scenarios would be they pick up an anomaly on a 20-week scan and there’s no opportunity to terminate earlier,” says a senior doctor in Melbourne, who wishes to remain anonymous. Indications for such a procedure include cardiac anomalies, severe limb abnormalities and “any kind of structural or suspected genetic defect that could be lethal or have a significant impact on a person’s life.
“You can imagine that if the mother is induced without foeticide, it can be very distressing for everyone if the baby’s born alive only for it to struggle and die soon after.”
Mercy patients are referred to the Royal Women’s hospital for foeticides, and then may return to the Mercy a few days later to deliver a stillborn. “Once the baby’s dead, the Mercy is able to have them back to deliver,” the doctor says.
Months after the Mercy refused to terminate her pregnancy for medical reasons, Jennifer filed a complaint at the hospital.
“Part of why I complained [was] this feeling of my grief not being in vain,” she says.
“I guess I sort of held hope that by listening to my story and other people’s stories that maybe some advocacy could occur on behalf of all these patients,” she says, adding that she recognised that the hospital was bound by Catholic Health Australia’s code of ethics.
The complaint was dismissed without action. “That left me a little bit shocked, a bit disheartened and really invalidated and frustrated.”
Mercy Health declined to comment specifically on Jennifer’s case due to privacy reasons.
A spokesperson said: “As a leading provider of maternity services for thousands of Victorian women, Mercy Health is very experienced at compassionately managing the devastating impact on a woman facing the trauma of pregnancy loss and we provide a comprehensive range of care and support.
“Where we do not offer a specific procedure because we are a Catholic healthcare provider, we are committed to supporting a compassionate and timely pathway for the patient, with the health of the mother always uppermost in our clinicians’ considerations.”
‘Termination was the best option’
In Brisbane, in January 2021, Amy was devastated when a genetic screening test during her first trimester showed a high likelihood of Edwards syndrome. Babies born with this chromosomal condition typically do not survive longer than a week after birth.
A scan at the Mater hospital, where she was receiving maternity care, confirmed the sad news. “They were really emphasising that the condition is incompatible with life and leading to the conclusion that termination was the best option, without saying it themselves,” Amy recalls.
“We knew from the outset that we were going to end the pregnancy.
“I wasn’t going to … put myself through the trauma of a late-term miscarriage, or put this baby through a terrible day on planet Earth hooked up to a machine.”
Similar to Jennifer’s experience, Amy was told that Mater hospital would not perform her termination due to its Catholic affiliation. She had received excellent care from the Mater during her first pregnancy, with a difficult delivery. “To have been cared for by them in that situation and turfed out by them in this scenario … when the dust had settled, I was furious that religion was calling the shots.”
Amy did not want to put herself through the stress of waiting weeks for a termination in the public system. She had the procedure days later at a private clinic, at an out-of-pocket cost of hundreds of dollars, and struggled to process the loss of a wanted baby.
“It would have been nice to have been cared for in a hospital environment and to have felt that it was the right medical thing to do,” Amy says. “There was just an added insult of having to pay for this thing that should have just been part of my care – and had I lived in the northern suburbs of Brisbane, would have been part of my care.”
Depending on where someone lives, they may not have a choice as to which public hospital they attend for maternity care, while other women fall into two catchment areas and can choose. In Brisbane, women who live in the northern suburbs are serviced by the Royal Brisbane and Women’s hospital, which is not Catholic and regularly performs terminations of pregnancy. For those who live south of the Brisbane River, the Mater is the most advanced maternity hospital available.
A Mater spokesperson said: “Mater delivers exceptional, compassionate healthcare services to public patients under a longstanding service agreement with Queensland Health. Mater Mothers’ hospital provides a wide range of clinical services under this agreement.
“Mater clearly communicates the range of services it provides through its patient information platforms. Where Mater does not provide a particular service, all efforts are made to ensure the best outcome for patients through the provision of information, counselling, support and, where necessary, connection to alternative specialists and hospitals.”
Doctors who have worked at public hospitals bound by Catholic Health Australia’s code of ethics have expressed the strong need for structural change.
“My view, reached after my various experiences, is that the church should not be allowed to run any institution providing women’s health or end-of-life care,” says a senior clinician in a Catholic hospital, who asked to remain anonymous.
“Clinicians in the system are constantly having to find work-arounds to get the woman what she needs. This stigmatises the woman and also separates her from supports she has formed … at the most difficult time in her life. The work-arounds usually work, but at great cost to everybody involved, as a veneer of deniability has to be maintained.
“There is [also] no protection for the woman should they get a zealot who wishes to obstruct access,” says the senior clinician.
A retired obstetrician who asked to remain anonymous tells Guardian Australia of his frustration at “how non-medical bodies can keep on interfering with professional freedom and recognised good medical practice”.
“I’m firmly of the belief that if they expect to get public money then they should provide the whole range of legally condoned … obstetric and gynaecology services. They shouldn’t be in a position where they can accept public money but then choose how to spend it.”
Jennifer, in Melbourne, has since had a child. For any future pregnancies, she will opt for the Royal Women’s hospital, whose catchment area she also falls into. “At a values level, I don’t want to support any sort of system that receives taxpayer money but can’t properly care for people who are in need.”
*Name changed to protect identity
This article was updated on 6 September 2023 to correct the fatal condition that Amy’s baby suffered from. It was Trisomy 18 (Edwards syndrome) not Trisomy 13 (Patau syndrome).
Crisis support services can be reached 24 hours a day: Lifeline 13 11 14; Suicide Call Back Service 1300 659 467; Kids Helpline 1800 55 1800; MensLine Australia 1300 78 99 78
Do you know more about this topic or have you had similar experiences? Contact Donna.Lu@theguardian.com
