House debates

Tuesday, 30 November 2021


Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading

6:33 pm

Photo of Michael McCormackMichael McCormack (Riverina, National Party) Share this | Hansard source

I appreciate the sensitive and respectful way that members are approaching this issue and talking about this issue. I get that it is a conscience vote and these sorts of ethical debates are always very hard, because you have to grapple with your own conscience. You have to, of course, take the views of your electorate. Many people are influenced largely by their upbringing, their church, what their parents told them and what they have experienced in their own lives. I am no different to anybody in this place in that regard.

This is a very difficult topic. I've had correspondence from many people within my electorate. I've listened to their views. I've respected their opinions. I've talked with many constituents. I've had letters from religious leaders within the Riverina. I appreciate that my bishop, Mark Edwards—I'm a Catholic—who is new to the diocese and for whom I've got the highest regard, has quite correctly pointed out to me that he heads a very conservative diocese. He says his heart and, he assured me, the hearts of everyone go out to families who have children with mitochondrial disease and to those with the understandable desire that their future children not suffer these burdens. He pointed out to me—and no-one would have any countenance to this—that we all want to spare children illness and suffering. I understand that, and I respect that.

When I entered parliament in 2010, the erstwhile senator John Williams said to me once, as we were having a quiet discussion about life, that no-one should ever complain about getting old because, as he quite correctly pointed out, some don't get the chance. Some don't get the opportunity to grow old; they die young. Whilst it's far removed from this debate, a 20-month-old child was, sadly, taken today when they were crushed by a truck in Temora Shire. When I read the report, my stomach churned—and I can hear the member for Dawson grieving behind me, just from hearing me say that. It is heart-wrenching. The member for Dawson and I have had a few disagreements lately, but I respect his advocacy. I know he is the father of a very young daughter. My children aren't that young these days, I'm happy to say.

The previous speaker said that he hopes his children grow up healthy and happy, and I think that's all parents can ever hope for. Nobody starts out as a parent wanting anything other than that. Sure, as life goes on they all want them to be astronauts or prime ministers or the best they can be. But at the outset they just want their kids to be happy and healthy, and, quite frankly, if they're happy and healthy then being astronauts or prime ministers or anything else doesn't really matter—as long as they be their best selves.

To former Senator Williams's point that not everybody gets the chance to live to an old age: I have grappled with my conscience and I have tried to read as much as I can about this debate before us. These views have been expressed to me by people within my electorate. My office staff are very, very good when I'm out and about in my very large electorate. When I was the Deputy Prime Minister they took a number of constituents' interviews, and I thank them for that. They listened empathetically and with a heartfelt manner, as they always do. My staff are so exceptional.

Two people came to my Wagga Wagga office and to my Parkes office with their own stories about why they felt this legislation was so important. This afternoon I rang one of those constituents. She was on her way to delivering some goodies as a part of a fundraiser for a local high school. That's the sort of person she is. This is the sort of person that I know we've all got in our electorates. Her name is Nicole Baldry. She's a young mother. She's a farmer with her husband, Carl, near Bethungra. Nicole and Carl have four beautiful children, but one of them is not with them anymore. They have Angus, who is 12; George, who is eight; and Rupert, who is almost two. But they don't have Henry. Henry died on 7 April 2016. He was a beautiful child in every way. I shared with Nicole my own mother's grief that she had for a baby lost, stillborn. I am looking forward to meeting Senator Kristina Keneally on Thursday about her particular advocacy in that regard. My mother grieved for her whole life at losing a baby who she carried to full term and lost on the day he was born. Whilst we never got to know that little boy, my mother never stopped mourning him.

I know that Nicole and Carl will never stop mourning baby Henry, who died at nine days old—nine days young. She said he was perfect for the first 10 hours, but he never fed and never opened his eyes. She wrapped him up and laid him in a little crib, and he made a noise that she felt was odd. She had had two children, and mothers know instinctively when something is not right, much more so than, perhaps, fathers. I am a father, and I admit that mothers know; they just do. She said she called the nurse, and the nurse came straight away for a welfare check on her as a young mum having just had a newborn. The nurse ran down the corridor and got some other help to see what was wrong with little Henry, and Henry was not right. This was at Wagga Wagga Base Hospital. Henry was transferred to Sydney, and later on he died in Westmead Children's Hospital.

It took, almost unbelievably, a full year—just think about that; 12 long months—for the biopsies to determine that little Henry died from mitochondrial disease. The grieving of Nicole and Carl didn't stop then; at least they knew what Henry had passed away from. Nicole is a very big advocate for this legislation to be passed because she doesn't want to see other families suffer the way she has, the way her family has. She says that whilst she doesn't actually have it, there is a fifty-fifty chance she would carry it on to any future babies; both she and her husband carry the genes to pass it on.

When couples fall in love—most of us can probably remember when we fell in love with Ms Right or Mr Right—they might get engaged and get married, and they might just decide to have children together. We live in a modern world, and no-one holds anything against people. What people want is to provide a loving, caring, nurturing home. When they have kids, they just want them to be happy and healthy, but when you fall in love, you don't know the person with whom you fall in love, be it a male-female, female-female or male-male relationship. You don't know whether the genes that you both possess are going to cause hardship and heartache and debilitating illnesses and diseases for the children, the offspring, that you may produce in the future. This legislation can provide you with at least the ability to predetermine that your children will be happy and healthy. Going back to what former senator Williams said, that is all that you want for your kids—for them to grow up to an older age.

I know it's difficult legislation. I appreciate that it's a conscience vote and there will be members who will vote no all in good conscience. There will be members who vote yes all in good conscience. No-one should think any less of anybody for whichever way they do decide to vote. Indeed, people out in our electorates should not think anything less of how anyone decides to vote, just like with the Voluntary Assisted Dying Bill in the New South Wales parliament, which has been taking up so many headlines in so many newspapers in recent times. These are difficult debates, but having a vote on these is what I think makes our society better and makes our society stronger.

Far be it from me to come into this place, having served 11 years here, and not vote the way that I think some families would like me to vote, because I don't want to have to look them in the eye down the track years from now and for them to have a child who is profoundly ill because of a mitochondrial condition that could have been avoided had perhaps I voted a different way. I don't want to, in one sense, play God in that respect. I appreciate religious leaders will say, 'You are playing God anyway.' I'd like to think I am faith driven. I do pray—I pray for a better society every day in many ways.

But, having spoken to Nicole Baldry today, she said that she could see why people would say that mitochondrial intervention would provide blue-eyed, blond-haired, genetically perfect children. That's not what this is about. It's about making sure that, if people are predisposed to or carrying mitochondrial genes, they can avoid passing it on to children who would then potentially suffer a life of heartache, pain, disfigurement, and going to school and suffering all the torment and bullying that, sadly, children who are born different—if I can put it that way—endure, even today. Nicole said, and it was quite profound, 'I would do anything to stop my child living through that.' I know that what Nicole Baldry said would be the view of so many parents.

Nicole told me she met a 74-year-old man who suffered from conditions of mitochondrial symptoms. He expressed to her how difficult his life had been, how hard his entire existence had been, because of what he had endured. I have to say that her conversation, her arguments and her advocacy were very compelling. For that reason—not just Nicole's viewpoint but the viewpoints of many others, whilst fully respecting the viewpoints of those opposed—I will be supporting this legislation. In good conscience and for the fact that I want kids to have their best start, their best lives, I will be supporting this legislation, as difficult as it is.


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