It's a shocking notion. Tonight on Sunday ` parents having their children sterilised. Seems happy,... (LAUGHS) (LAUGHS) Look at yourself. Are you pretty? ...but ` and it's a big but ` How do you feel about imposing sterilisation on Eliza? the parents want her to have a hysterectomy. It's the only option that we have. # And through those storms. # Oh, through those raging seas... A huge impact... # You will be loved. ...in a very short time. # You'll be loved. # Kia ora. I'm Miriama Kamo. Eliza, like every young woman, has the right to bear a child. It's enshrined in law. But Eliza's severely intellectually disabled. Her parents want her to have a hysterectomy ` take away her chance of being a mother. What would you do? Whose interests do you put first ` yours or your daughter's? And whose decision, ultimately, is it? This story is deeply personal and tackles sensitive and challenging issues. Here's Janet McIntyre. (LAUGHS) Look at yourself. Are you pretty? (LAUGHS) Are you a princess, or are you a bride? Princess. Eliza loves frilly dresses, noisy cars... I` It's a Holden. It is. ...and a necklace of plastic chains. That's her security blanket. Yep. Can I have a bit more? LAUGHTER 'She has the body of a young woman,...' Pink. Pink. Pink. Yeah. '...but the mind of a young girl.' Did you go to the movies? Yes. Yes. Yeah? What did you see? Smurfs. The Smurfs? Are they your favourite? Are they your favourite? Yeah. They're funny, aren't they? Yeah. I know, but we can't... Louise Robbins and Jeff Brown already had two healthy boys when Eliza was born with severe brain damage ` You can give her a kiss. the result of a complex genetic disease. We decided when she was born that this is the way it would be; we would look after her. And... And that's what we do. Yep. Another piece? Another piece? Oh, yes, she's a big fruit-eater. Partially continent as she grew up in Melbourne, at age 12, when her periods came along, she lost all control of her bowel and bladder. What do you want in your sandwich? Vegemite? Now 16, she's in nappies 24-7; the whole family pitching in to care for her. The boys are fantastic, cos they shower and change her in all times of the month. And that's a lot to ask of a 21-year-old boy. I've never really been too squeamish or anything like that. But life with Eliza is fine. She's my sister. If she needs any help... Because of Eliza's complicated medical condition, contraceptive implants and drugs to control Eliza's periods are not an option. And Eliza is distressed by the sight of blood. She tries to stop the bleeding ` so she, sort of, self-mutilates. Um, she'll take off her nappy repeatedly, and then she won't replace her nappies. So she's quite often walking around with no pants on. Has she embarrassed you? I'm not embarrassed. But she's embarrassed herself, yeah. She's taken off her nappy in... shopping centres, and... What have you done to try to help her manage? I've tried drawing pictures. I've tried signing. I've tried explaining. I've tried showing her when I've got my period, like all the experts tell you to. The whole point is she just does not understand, and she's scared, and she's frightened. And it's just very frustrating not being able to help her. And it's just very frustrating not being able to help her. Is it always like this? Always. Oh! You wanna park the bike? Then we'll go for a walk; see if we can find a lizard. Eliza's paediatrician says she would benefit from a hysterectomy ` surgical removal of her uterus to permanently stop her periods and, of course, prevent pregnancy. Wanna hold my hand? No? Yes? But it's controversial; a breach of her human rights. Are there` Have the birds got all the fish? Can you see any down there? In Australia, it requires permission from a court. And Eliza's family has been told that's unlikely. Nah. None there? How do you feel about imposed sterilisation on Eliza? This has been a really heart-wrenching, devastating realisation that it's the only option that we have. The only end in sight for Eliza is to have her uterus removed. It's been described as violence and torture ` the sterilisation of intellectually disabled girls and women without their consent. It does happen in NZ. But in Australia there's a strong push to criminalise the practice, and it's causing some Australian families to covertly head to NZ. It's definitely the only option that we have, really, is... is NZ, yeah ` somewhere where we're not asked to prove... to someone who doesn't know our child that this is the best for her. And you know for a fact this has been done in NZ? Yep. I've spoken to two mothers who have had it done in NZ, and it's changed their lives. In NZ, no statistics are kept on the sterilisation of intellectually disabled girls and women. But we know it happens; privately organised between families and doctors. Do we have a softer approach to sterilisation than what's being taken in Australia? Yes, we do. I mean, I think that those private decisions made by the medical profession and families are under the radar in NZ. We don't know how often it happens. We don't collect the data. I think we should be collecting it ` on a national level and international level. Trish Grant, of NZ's disability advocacy organisation IHC. I mean, I know of many young and older women with intellectual disability who have had sterilisation procedures. Sunday has spoken to three families of NZ girls and women who've been sterilised without consent ` the youngest just 7. Trish Grant says it's a breach of not just our Bill Of Rights Act, but five United Nations conventions ratified by NZ. To have something done to your body without being able to consent could be seen to be an act of violence. In Australia there's just been a Senate inquiry into so-called forced or coerced sterilisation. And the government looks set to make it more difficult. One person sterilised without their consent is one too many, as far as I and the Australia Human Rights Commission are concerned. Australia's Human Rights Commissioner, Graeme Innes, is blind, but he has a clear view about the rights of disabled women and girls ` if they can't consent, they can't be sterilised. Because it's interfering with a woman's basic bodily integrity. So if you're going to do that ` if you're going to take those sorts of extreme actions ` then there needs to be, uh, consent. And that's what the international human rights law provides. Can Eliza consent to be sterilised? No, cos Eliza doesn't consent to catch the bus to school. That decision's made for her by us. There's no way her IQ could... absorb what a hysterectomy was. There's no way she could consent. Louise Robbins was at the Senate committee inquiry and listened to the submissions. How sterilisation is violence against women, and anyone that lets it happen is a torturer. Did they daunt you? They` It upset me, because when I got to speak, I actually said to the senators, 'Not one piece of evidence I've heard this morning has any relevance to my everyday life.' A lot of the evidence was about preserving and honouring Eliza's rights as a young woman. The most` number-one human right is actually the right to human dignity. So I believe that overrides that, because Eliza's right to human dignity is a right to be able to participate as a valued member of the community, and to live a life that's not full of fear and pain and confusion. Would you like to have a baby? Yes. Yes. You would? When she says she'd like a baby, does she mean it? No. Eliza will say yes to most things that you say to her. If you ask her if she wants an elephant, she'll say yes. With the intellect of a 4-year-old... A 4-year-old could not have a consensual sexual relationship with another human being. Parenthood and motherhood is not an option for Eliza. Do you have any sympathy for the family of Eliza Robbins-Brown, who's 16, can't manage her periods, can't have contraception and can't consent to a hysterectomy? can't have contraception and can't consent to a hysterectomy? Uh, look, I have sympathy for all, uh, families of women and girls with a disability in this situation. But there are a range of other alternatives. And one of the recommendations we made to the Senate inquiry is that the public education and awareness should be improved, because there clearly isn't enough of it. Pink here? Yes. Yes. Do you like that? Yes. But Louise says education won't help Eliza. And the possibility of her being sterilised in NZ could also disappear if that too is criminalised, as recommended by Graeme Innes. That's it. Do you like it? Do you like it? Yes. I certainly know of people who have travelled to other countries. And what's your view on that? And what's your view on that? Uh, well, our recommendation is that that too should be unlawful, because if it's not, then there's an easy way to, um, get around or subvert the laws in Australia. Next ` the doctor putting his reputation on the line... I'd be happy to lie down in front of bulldozers over this one. ...to arrange an underground hysterectomy in NZ for a desperate Australian mum. She's petrified that the law may change in Australia to criminalise, retrospectively, what she's done. # There's only one Jessie Allen. # One Jessie Allen. # I've been told over the years, um, that Jessica has a right to voice her own opinions and choose what she would as a normal young lady. Jessica, would you like to be able to experience your periods? These are the questions, according to her mother, 23-year-old Jessica has been asked over many years. Would you... like to be able to experience being pregnant and having your own child? Would you consent to your mother's wishes to have a hysterectomy? Jessica? Jessica? It's just ridiculous. Um, I'm her voice. Jessica has no comprehension of anything that you just asked her. When Jessica's pain with her periods couldn't be managed, she was fitted with a contraceptive implant, under general anaesthetic, to suppress her cycle. But Fiona Allen worries about continuous hormone therapy, potentially for the next 30 years; multiple anaesthetics; and Jessica needs full-time care. I'm not going to be here forever with Jessica. What have you been told about your chances of Jessica being able to have a hysterectomy? Very slim. I think we've probably got a 1% chance of approval being given. How can a severely disabled person give consent? Firstly, lots of times people's capacity to provide consent is, um, underestimated, and the impact of a person's disability is... is, uh, given greater weight or import than it actually has. But if a person truly can't give consent? The procedure shouldn't be carried out, unless there's a life-threatening emergency. You haven't noticed any changes in your hands? Enter Professor John Carter, a leading Sydney endocrinologist taking on the Australian Human Rights Commission. I'd be happy to lie down in front of bulldozers over this one ` as would my wife. Professor Carter and his wife are the parents of severely disabled Sophie, who herself had a hysterectomy 10 years ago, aged 21. No more. No more. No more periods? No more. No more periods? No more. Professor Carter is willing to evade Australian courts to facilitate the operation in NZ. He's already done it once for a severely disabled friend of Sophie's twice denied permission by New South Wales courts. I contacted a colleague in NZ and explained the situation, and, uh, then arrangements were made for the mother and daughter to fly to NZ. How difficult was that to arrange? Well, it was very easy for me, because it was done by email and phone. Was there any resistance in NZ? Uh, not by the... by my medical colleagues. He won't disclose the names of the two NZ doctors, or the mother of the girl. The mother is petrified that the law might change in Australia to criminalise, retrospectively, what she's done. That's alarming information, and it really... I think the onus does fall on the medical and legal professionals involved. I think they should be reflecting on what is needed to ensure that disabled people's human rights are protected to the same degree in NZ as they are in Australia. If it's covert and it's underhand, then it's absolutely unacceptable. If someone else came to you with their daughter and asked you to help them get to NZ, would you? If I were convinced that... a hysterectomy was the best form of therapy, I certainly would. Even if that meant, in future, you might be party to breaking Australian law? I'm not really concerned about that, because I don't, uh... if that's what's included, I believe that the problem will be in the law, not me. Smile. BOTH CHUCKLE The right to bodily integrity versus the right to dignity. Best interest of the girl, or self-interest of the caregiver? The issues are not easy, not straightforward, but surely not to be sidestepped. For all of us, we have a right to decide what happens with our body; to develop, to mature physically; to experience your own sexuality; with the right support, to have a child. And that's a fundamental human right. (LAUGHS) What do you say to claims that for Eliza to have a hysterectomy will make it easier not for her, but for you? Well, no, this is not about me. I'm quite happy to change Eliza's nappy for the next 40 years. What I'm not happy about is to see the distress, the anxiety and the self-mutilation Eliza goes through one week out of every month. It's not about me. Do you like it? GIGGLES: Yes. Yeah, that's a really tricky one, huh? All right, remember wee Eva? Now, we brought you her story three weeks ago. Next ` her sister's tribute, forged in song. # And don't you know, # oh, don't you know, darling, # you will be loved. # You'll be loved.# INQUISITIVE MUSIC He is about to say, 'No split bills.' Now they're thinking, 'How are we going to work this one out?' Now they're really thinking. 'Just zap some money to Andy using his mobile number, and he can take care of it. Simple.' ANZ's thinking the same way. The ANZ goMoney app puts your bank in your hand wherever you are. Now they're thinking, 'Wow, that was easy. So, same time next week.' Hello again. In her short seven weeks, a wee baby called Eva made a huge impact on us. You responded in droves ` inspired by the courage and love of the Turner family for their little girl. They faced an unimaginable decision. The prognosis wasn't good. But the Turners prayed for a miracle. This is their beautiful story. # Through those storms. # Oh, through those raging seas, # you will be loved. # You'll be loved. # We were blessed with that one wish. This week Nakita Turner recorded her song. # We never guessed # it would be this way. She wrote it for her baby sister. # But you'll be there, and nothing will change that. # All we know # is it won't be that easy. Eva is certainly loved by her extended family, but she spent her short life in intensive care. # You'll be loved. # When Nakita found out, um, that we were having a girl, oh my goodness. She was just thrilled, weren't you, Nakita? weren't you, Nakita? Yeah. weren't you, Nakita? Yeah. After two brothers. Four months ago, the Turners were excited. We thought it was gonna be a boy. And then me and Luca looked at each other, and the lady was, like, 'Oh, it's a girl.' We were, like, 'Oh!' (LAUGHS) And the Turners named their unborn child Eva, meaning life. Just to see her, it's just beautiful. But at Claudia's 20-week scan, they discovered Eva has major problems. She said, 'Look, there is a sac on the back of the baby's spine, 'and I'm not sure, but I think your child has spina bifida.' Was there ever any doubt that you'd have Eva? Was there ever any doubt that you'd have Eva? No. Not a doubt. No. We knew that` It didn't matter what the baby was. We were gonna go ahead anyway. Around 75% of babies with spina bifida are terminated. But the Turners believe Eva is a blessing from God. Do we just write everyone off because there's an issue? Or do we give everyone a chance at life? And I think everyone's got a chance at life. Club feet, yeah. But back then, no one knew just how serious Eva's condition was. It's quite a severe deformity, really. Eva not only has a split spine, but also increasing pressure from fluid around her brain. I think it's inevitable, in these diagnoses, that there is some brain damage. The extent of that is quite difficult to predict. In September, Eva was brought into the world early by caesarean section. They could see that she was in stress, and so they had to really act quickly. And now Eva's problems were clear. She's not breathing, really, on her own. She's on a machine and needs help. You're doing so well, darling ` so well. But, despite surgery and intensive care, Eva's breathing has not improved. It doesn't really look that great for the future, so, yeah... Short of a miracle, of course. So every day we have with her now is a blessing. We don't know how long that will be, but... obviously it could only be a couple of days or a couple of weeks. # And don't you know, # don't you know, darling... So those who love Eva the most ` her parents, her sister and brothers, godparents and grandparents ` have come to pray for Eva; to farewell her. A better place is waiting in the arms of Jesus. They took the mask off Eva; took her for a walk in the park. For 32 hours Eva lived unaided by machine. And then she stopped breathing and died in her father's arms. The Turners came back to Hagley Park to give thanks for baby Eva. Her life was so short, but for her mother, no regrets. God, I asked you for a miracle healing for our precious daughter Eva. It did not come here on this Earth, but it did come. And now you are healed, little Eva. You're a beautiful gift from God. I love you, baby girl. # Oh, through those raging seas... ALL: Bye, Eva! # You'll be loved. # You'll be loved. # You'll be loved. # Uh, about one in 20 babies born with spina bifida have the severe breathing condition that caused Eva's death. If you want to hear all of Nakita's song, it's on our web page. And that is our show for tonight. Thanks for joining us. Nga mihi nui, hei kona.