I am having a rare moment of a lazy morning at home on the Sabbath. No, I’m not skipping mass for the sake of a good lie-in (that would be a mortal sin)–it is my intention to attend the Latin Novus Ordo mass at St Brigid’s in Fitzroy tonight at 6pm.
So, I have the opportunity of reading the Sunday Age from cover to cover (minus the Sports pages, of course). And there I found this story which was at once sad and hopeful: “We could not ask for more“, a side article in another article called “Gene genie: fresh hope in bones battle“. It is about at Melbourne couple who both have the dominant gene of the disorder that “was once called ‘dwarfism'”. The story is that whenever they conceive a child, there is a one-in-four chance that that child will have a fatal genetic flaw that will cause it to die either before birth (resulting in a still-birth) or soon afterwards. The hopeful part of the story is that this (I think) heroic couple are determined to have a family despite these odds–and in fact do now have two children. The sad part of the story (and believe me I am not passing judgement here–just expressing sadness at what must be a terrible choice for these parents) is this paragraph:
“We always said we’d go ahead with the pregnancy as long as there was no fatality with the double dose [of both our genes],” Mrs Daniels said. Meghan is now a happy four-year-old, and Max a healthy baby. But between the two births there was much anguish as, with a second and third pregnancy, each unborn baby had the double dose and the pregnancies had to be terminated as there was no hope of the babies living.
Its that last line of “the pregnancies had to be terminated as there was no hope of the babies living” that gets me. As the article says:
They had the advantage of early warning of the genetic bone disorder, thanks to the discovery of a gene by Associate Professor Ravi Savarirayan.
“By having the knowledge, we didn’t have to go through having stillborns,” Mrs Daniels said. “We grieved earlier…”
In the midst of life there was death–and the inevitable grief–but what the technology made available was an early clinical death at the hands of the technologists rather than a later natural death as a result of the genetic disorder. I can understand that the former would be less traumatic. I just don’t know that it necessarily makes the situation any better.