Nick and Yuan

‘From the moment I found out my child had Down syndrome, I spent some 300 days fighting medical odds for my son’s survival,’ Yuan told the Royal Commission.

‘I’ve heard stories from those who were pressured to abort their disabled babies, and from those whose special needs children were denied adequate care in hospital … I’m adding my experience of both, from the perspective of a single mother and an immigrant.’

Yuan found out she was pregnant with Nick about 10 years ago. When she turned up at the hospital for her 20-week ultrasound to find out the gender of the baby, the doctors delivered the ‘bad news’ that the baby had a heart defect, a blocked bowel and it was very likely that he had Down syndrome.

Yuan was advised to get an amniocentesis test done before it was too late to terminate. Yuan told the doctors she ‘was satisfied to work with the assumption that [her] baby did have Down syndrome’.

‘I told them that termination was out of the question.’

At her next check-up, a midwife suggested Yuan take the amniocentesis test to help her better prepare for the baby’s level of disability. Yuan said she’d think about it.

At the next antenatal appointment, Yuan told the doctor she would like to get the test done. The doctor was excited, as though relieved that Yuan had come to her senses, and said they’d better get this done quickly because she was running out of time. Yuan corrected the doctor and explained she just wanted to find out the level of disability she needed to prepare for. The doctor stopped in her tracks and said the test only gives a positive or negative.

‘To this day,' Yuan says, ‘I have no idea if it was pure ignorance by the previous person that led me to be misinformed, or if it’s just a symptom of the systemically coercive environment to terminate.’

After Nick’s birth, a doctor confirmed that he had Down syndrome, that he would need bowel surgery within a couple of weeks and one or more heart surgeries down the track. The doctor said to Yuan, ‘His bowel we can fix, his heart we can fix, but there’s no cure for Down syndrome – do you understand that?’

‘This kind of condescension,’ said Yuan, ‘… basically, the doctors think I’m stupid.’

Over the days, weeks and months that followed, there was a series of additional health complications requiring serious interventions. Yuan felt the hospital system was ‘hellbent on pressuring [her] to give up at each turn’, to withhold treatment and let Nick die.

At three months, the hospital wanted to transfer Nick to another medical team. Yuan complied because she didn’t want to leave her son ‘in the hands of professionals who didn’t think he was worth saving’.

The new medical team came up with a breakthrough. At five months, Nick was finally strong enough for his open-heart surgery. After spending the first 217 days of his life in hospital, he was able to go home.

‘Contrary to the doctors’ doom and gloom even as [Nick] left the hospital … he has thrived – all the residual holes in his heart have healed without need for further surgery, and he’s the happiest little kid I know.’

Yuan told the Royal Commission, ‘I made a choice to “hold it together” during this period, … some of the medical staff interpreted my stoicism as stupidity … I had to ask myself if it was my appearance that made them think I was some illiterate refugee, or if it was par for the course for them to talk down to everybody …

‘I’m still struggling; it still keeps me up some nights. It affects my relationship with medical professionals and with society at large (e.g. when anyone insinuates that I’m a bad or inadequate parent).

‘I’m hoping that by sharing my experience, future parents can be better prepared for the insidious eugenics practised by some in the medical profession right here in Australia, accept that doctors often get things wrong, and claim their right to stand up to them when they do.’