Imagine this. You’ve spent your childhood with a brother bound to a wheelchair by a disease that causes him immense suffering. The condition has haunted your family for generations, killing male children and putting the female ones at risk of passing the faulty chromosome on to their own kids.
The disease is haeomophilia, a disease of the blood that, while treatable, causes a lifetime of pain and disability.
The good news is that, while no cure exists, there is technology that can help. Bypassing the pleasure and privacy of sex, you can conceive using IVF. Scientists will “diagnose” the sex of your embryos, discard the affected males and implant a female. Nine months later a healthy girl will be born.
Or not. Last week Victorian couple Fiona and Paul took action in the Supreme Court against Melbourne IVF, Ballarat Health Services, their obstetrician and Bendigo Radiology for failing to tell them that, in spite of all their pre-implantation efforts, Fiona was gestating a boy. Had they known, the couple says they would have considered termination and their son Jesse, who came into the world with a severe form of haemophilia, may never have been born.
The success of the couple’s case will turn on the particulars of their situation, but recent Australian court decisions on “wrongful births” have favoured the parents. In 2003, the High Court upheld a lower court’s decision to compensate Kerry Anne and Craig Melchior for a healthy boy, Jordan, who would not have been born but for Kerry Anne’s doctor botching her sterilization.
The logic of the pro-compensation camp is compelling. Contraception and pre-natal screening are designed to prevent the birth of a particular child – one affected by disease – or any child at all. Society cannot allow parents to avoid the birth of children they say they cannot parent, but then deny them compensation when their prevention efforts fail through no fault of their own.
Despite this, such cases perplex and confound. We all know that conferring immunity on incompetent doctors is a recipe for health-care disaster, yet feel sick at the thought of a child discovering later in life – perhaps in excruciating detail – how much his parents wished he’d not been born.
But what we need to keep in mind is that the way parents like Fiona and Paul feel about a child they haven’t yet conceived, or a very early embryo in vivo or vitro, is very different to the emotions provoked by a newborn lying in their arms. Indeed, it is this difference that leads them to try and avoid a very sick child being born in the first place. Because they know that once that child arrives, sick or not, they will love him, and suffer with him. Indeed, it is to avoid this – the loving of a sick and suffering child – that they sought in good faith to avoid, and for this child that they sue, not for themselves. Because while money is good for hospital bills and respite care, it won’t touch the guilt and heartache born every day by the parents of a chronically sick kid.
Understanding this ends the mystery of why nearly all pregnant women who can’t parent choose adoption over abortion. Because abortion lets them halt the development of something that, if born, they would love and feel they could never give away to another. Their child.
Why Parents Try to Avoid the Pain of Loving a Sick Child Sunday Sun-Herald (Sydney)