If you’re here to read about Olivia and Andrew Densley, the ‘selfish’ parents who ‘genetically engineered’ a baby for the sole purpose of pilfering its body to save the life of its older sibling, move along, because that’s an over-simplification of the issue.
For me, the real issue of their tale is that parenting is full of brutal calls for which nothing can prepare you, and you can never know what you would do in the exact same situation.
The Densleys, from Melbourne, shared their story on 60 Minutes last night, describing how the illness Wiskott-Aldrich Syndrome has affected their family. The disease has a strong genetic component, and two out of the couple’s six children have been diagnosed with it. Luckily, Cooper, who was four when he was diagnosed, was able to receive life-saving bone marrow from his younger sibling.
But soon after that, the Densleys fell pregnant with their fifth child, Fletcher. Dashing their hopes, they discovered when he was also diagnosed with the illness that none of his siblings was a donor match.
And so, the Densleys made a decision: to have a sixth child, via IVF, that would be a bone marrow match. Yes, pretty much a ‘baby with bone marrow benefits’.
The Densleys admited that they were in a terrible position, agonising about their options, and it almost broke them. But ultimately they made a tough call to go ahead with a planned sixth child who would be a match.
“I have thought about down the track when the child is older and it does hear about why it was conceived, I do worry about that about what I would say and how the child would feel,” Olivia said on 60 Minutes.
“But at the moment I feel like it’s not a bad thing. I feel like we can positively say to that child, ‘Yes we did have you for some of your bone marrow but it’s a good thing because we knew you were gonna be okay’.”
Of course, the courage of those convictions has been a roller coaster for the Densleys, and I don’t envy them one little bit; especially after the negative reaction they received online.
"All I feel is anger for these selfish parents and sadness for these innocent children. How can these parents be the best to their children, when their decisions have been based on their desires, and what is best for them, instead of on what is best for their children?", one person wrote on the 60 Minutes Australia Facebook page.
"Selfish in so many ways, a poor baby before even entering the world with a weight of expectations and responsibilities," wrote another.
Selfish was the most commonly used word in the comments, and there was very little empathy for the position the parents found themselves in.
As a parent myself, I did ask whether I'd make the same decision. Who knows, but I do know this: the weight of having to make one would have crushed me.
And that's the real issue here. It's not something that's written about in parenting help books, or shared by even the most vocal mummy bloggers, because it's something that's so inherent about parenting, we don't even realise we're doing it: making decisions about your children's lives.
You can't even call them choices, because more often than not, you're forced into a decision, 'choosing' between two evils, so that it's not even really a choice.
And yet, a decision must be made.
For the Densleys, that decision resulted in them having a sixth child to love, who would also be able to donate something vital to its sibling. Which is why calling them 'selfish' is grossly unfair.
I want to point out that the Densley's didn't "genetically engineer" a baby: they had a baby, using IVF to conceive - and that needs to be normalised - because it is normal.
This morning, I saw this written in a published article about them: "Going against nature to harvest children via IVF".
That is a disgusting description of IVF, the parents who decide to embark on the agonising and painful journey, and the beautiful children brought into the world as a result.
And yes, I mean beautiful children like my very own son, who is the result of three failed IVF cycles. So I know what I'm talking about.
I also know a little of what it's like to make an excruciating parental call.
A decade ago, when I got divorced, I also had to make a terrible decision about my family, even though I didn't want to. It's nowhere near the mammoth proportions of the Densleys', but it was a dilemma to me nonetheless.
Upon being told I couldn't use my frozen embryos after I was divorced, I decided to have those potential full siblings of my son's destroyed. My reasons were personal, and to be frank, I don't need to explain them to anyone. But it was the toughest call I ever had to make, because, I wanted those babies so badly. All of five of them.
Which is why I also know that the Densleys wanted their sixth child not just because it would save Fletcher's life, but because they knew they would also welcome and love a sixth child. They had the capacity in their hearts, and lives.
On August 2, that sixth child, Lilliahna, was born.
Lilliahna will be loved and spoilt, for her whole life; long after her bone marrow is used to save her brother. She's not going to be adopted out, because she's no longer of use. That baby will most likely be the treasured youngest sibling, in exactly the same way the youngest child usually is. Except in her, case, maybe even more so.
At its core, that's what this story is about: the love of a parent knows no bounds. Which is why, in all of the backlash and pile on in response to the Densley's story, only one opinion is fact:
No one, not even parents, knows what they would do in the exact same situation, for their children.
Olivia told 60 Minutes, "When you're a parent and the mortality of your child comes into question, it's just...it's huge."
We can ask, was it 'the right' decision? Or we can just be eternally grateful that it was one we didn't have to make.
We need to support the Densleys in doing what all parents do: make tough calls, often semi-blindfolded, and always with no crystal ball, just as every parent does, every day.
Top Comments
As someone elsewhere said, 'why are women ignoring the rights of this baby girl? I am shocked at the blatant disregard of a little girl's body by fellow women. So much for feminism! I don't understand this mindset. I don't think it is judgement to say what is basic common sense. That a baby shouldn't be designed just to have their body autonomy removed and be a forced donor. I don't think it is judgement to say every human being should have rights to their own body. I think that is common sense. Sometimes some things require judgement. What do you think about a little girl being born purely to be exploited and have her body autonomy taken away from her?!? What sort of society are we, if we DON'T judge that form of exploitation? Just as forced incubation/not allowed abortions is wrong, designing a spare part baby just to remove marrow/organs from them is wrong, too. Why aren't supposed feminists seeing that angle?
I seem to remember there being several legal cases where the donor child refused to undergo another procedure to keep their sibling alive.'
It feels like the baby girl is a commodity, something that can be designed (or aborted based on gender, as they do in other countries) to steal her parts from. Without her consent. She is a human being. Not a spare part back order. Why don't people look at it as a human autonomy vs exploitation angle? What about the human dignity and right of the girl to not have her body harvested from? At what point does the rights of this little girl born to be spare parts, at what point does her rights to her body autonomy become at least on level with the rights of the sick boy to live? Where is the ethics in designing a baby girl to lose autonomy of her body before she is even born? If they both have rights, which one has more rights? In the eyes of society and also in the eyes of the law?