"I was really, really depressed," Cindy said. "I couldn't think about anything else but the baby, and I felt I had been abandoned." Frank and Cindy said they were not told why the termination was not allowed. However, ectrodactyly is not life-threatening and may only affect the hand, and NSW Health guidelines state the prognosis for the foetus should be considered in the case of terminations where an abnormality is present. But Cindy – who grew up in China and spoke to Fairfax Media with Frank interpreting – felt immensely guilty about giving birth to a child with a disability. She believes she must be to blame for the condition. "I grew up with many people who were disabled, and… there was discrimination," she said. "I didn't want my child to be discriminated against. The problem is... obvious because it is the fingers, and I think the child would have a very hard life." After two weeks where Frank watched Cindy's depression grow deeper, Westmead referred her to Royal Prince Alfred Hospital, where her pregnancy was terminated at 28 weeks.

By that stage, if the foetus had been born prematurely there is every chance doctors would have kept it alive. Ainsley Newson, a senior lecturer in bioethics at the University of Sydney, said late-term abortion was a fraught area of ethics and law. "Distinguishing between serious and more minor conditions identified during pregnancy is difficult," she said. "There is no clinical or ethical agreement, and different people will respond to a diagnosis in different ways." But she said advances in imaging and pregnancy screening was creating more difficulties as more and more problems could be identified, and medical advances that could save premature babies increased. "We need to ask ourselves how we can best balance the justifiable need for reproductive choice with promoting good knowledge about disability and difference," she said.

The University of Melbourne's Lachlan de Crespigny says abortion access in NSW is "disgraceful" and inconsistent, with it being left up to doctors to decide whether proceeding with the pregnancy would cause a serious risk to the physical, emotional or social well-being of the woman - which various legal cases have established provide an acceptable reason for a termination. No exception exists for the health of the foetus. "Past 20 weeks it depends where you are lucky enough to go," he says. "Doctors are scared, because nobody understands the law… and women are the losers". Associate Professor de Crespigny said it was wrong to judge whether termination should occur based on whether the foetus could survive. "Women have the same rights as the rest of the population in deciding what to do with their bodies, so do you see them as a pregnant woman, someone who doesn't have that right to decide and must carry that foetus - that it is the role of the Catholic Church or parliament to decide for her?" He said despite clinics setting strict limits, these relate to technical factors not a change in foetal status. When Victoria legalised abortion it was accepted that any cut off point between early and late abortion is arbitrary – at no point does the foetus definitively change in any relevant way, he said.

It is not clear how many late-term abortions are performed in NSW. More than 100 pregnancies are terminated after 20 weeks each year, NSW health figures show, but these numbers include induction of labour after stillbirth or because of severe foetal distress, the department said. Kirsten Black, an associate professor of obstetrics, gynaecology and neonatology at the University of Sydney, said a study she recently completed found doctors working in the area said access to late-term abortion was restricted, and many felt distressed by having to make decisions under an uncertain legal framework. "The government supports screening programs but there is no systematic approach to managing the abnormalities that are detected," she said. "They have these clinical ethics committees [to decide] but there is a lack of clarity whether they are making ethical or legal decisions. And women don't have a say." After going through the termination and delivery of the foetus, Frank and Cindy said they feel sad but relieved. "It felt very inhumane, to be honest," Frank said. "We were being told that our only option was to give birth to a baby that we did not wish to give birth to at all.We felt we have been forgotten and abandoned through the political and judicial uncertainty of the abortion laws".

Joanna Holt, the chief executive NSW Kids and Families, said late-term abortion remained a She said different hospitals decided whether to terminate pregnancies based on whether they had the resources and skills needed, as well as the judgements of clinicians about the mental and physical state of the woman. "Each pregnant woman has her own individual clinical needs and, therefore, the treating clinician at the time would decide on the most appropriate course of action," she said. What is considered by a hospital when considering terminating a pregnancy? 1. The woman's physical and psychological condition;

2. Accurate assessment of gestational age; 3. In cases of birth defect, the diagnostic probability; and 4. In cases of birth defect, the prognosis for the feotus. Source: NSW Health guidelines.