VIDEO: When IVF Goes Wrong

"'WHEN IVF GOES WRONG"

24 June 2024

Four Corners

GRACE TOBIN: Tens of thousands of Australians turn to IVF every year in the hope of having their own miracle baby.

VIKKI MULLER: I've wanted to be a mother my whole life.

GRACE TOBIN: The lucrative industry behind baby-making can make those dreams come true.

EMERITUS PROFESSOR BILL LEDGER, Obstetrics and Gynaecology, UNSW: One in 18 births is an IVF birth.

GRACE TOBIN: But when things go wrong…

CHRIS HOMER: It's more bad news.

GRACE TOBIN: There's not enough transparency and accountability.

VIKKI MULLER: It takes forever getting back to the bloody starting line.

GRACE TOBIN: These are the stories… the errors… and unbelievable bungles that Australia's biggest fertility companies aren't owning up to.

ANASTASIA GUNN: How could they have used the wrong sperm to make children?

GRACE TOBIN: How many half siblings do you think you might have?

KATHERINE DAWSON: So, there could be potentially 700 siblings.

DANIELLE PATORNITI: Our children's conditions were not severe enough to stop the sperm from sale. It's just money. It's all it is.

GRACE TOBIN: Now, patients are coming together and fighting back.

ANASTASIA GUNN: I think they've messed with the wrong women.

SOPHIE HAWKSHAW: People need to know that when things go wrong, this is how they treat people.

TITLE: WHEN IVF GOES WRONG

GRACE TOBIN: In a farming shed in far northern New South Wales, two mums work into the night.

ANASTASIA GUNN: Oh yeah, those people are twins they're the ones I messaged i haven't heard back from.

GRACE TOBIN: This is the nerve centre of their two-year investigation into one of Australia's biggest fertility clinics.

ANASTASIA GUNN: We are like detectives because we're trying to find out the truth. Nobody is just offering up the truth to us, so we've gone looking for it. Sometimes, we just sit there and do that for hours. One of us will be on one website. One of us will be on another and then together, we put together the information.

GRACE TOBIN: Anastasia and Lexie Gunn are the mums of three boys, conceived through donor sperm.

ANASTASIA GUNN: Just click on that we'll see if that matches the information that we've got about the donor.

GRACE TOBIN: Most evenings, they spend hours searching for clues into what went wrong with the conception of their children.

ANASTASIA GUNN: We love our boys so deeply and what we want to do is get to the bottom of what's happened.

GRACE TOBIN: How do you personally describe what has happened to your family?

LEXIE GUNN: We had IVF and got the wrong sperm.

ANASTASIA GUNN: Hey, how you going, how was town?

GRACE TOBIN: The couple's oldest son was conceived in 2006 at the state's largest IVF clinic, the Queensland Fertility Group.

GRACE TOBIN: Anastasia says she took great care in choosing the right sperm donor.

ANASTASIA GUNN: Went to QFG and they had a big book with the donor profiles, at the top of every profile, it had the donor number but there was definitely no photos and no names. There's an age bracket for the donor, their educational background. and the health history as well

GRACE TOBIN: And what donor number did you choose for your first son?

ANASTASIA GUNN: I chose donor number 227. From day one, he was a big strapping boy.

GRACE TOBIN: Four years later, Anastasia and Lexie wanted to have more children.

ANASTASIA GUNN: We contacted QFG to check that we could use the same donor, and they said, yes you can.

Email from QFG: "I have some good news.. I've located amps for 227 and they can be reserved in your name now."

ANASTASIA GUNN: So, every point we were very clear in the documentation and every conversation we had with them that we wanted donor 227 to be the donor that we used.

GRACE TOBIN: Their youngest sons were born two years apart. As they grew up, both boys have had serious health issues.

ANASTASIA GUNN: Our middle child is diagnosed with hypermobile Ehlers-Danlos syndrome, as time went on, the diagnoses kept adding up. Our youngest son is less affected. He has joint hypermobility syndrome also. He also has a diagnosis on the autism spectrum and ADHD.

LEXIE GUNN: The two little boys have medical issues that the older boy hasn't got.

GRACE TOBIN: The couple wanted to find out if other children of donor 227 had similar diagnoses. So, they sent the boys' DNA to an ancestry website to track down other families. The results floored them.

ANASTASIA GUNN: I found it profoundly confusing. I could see that there was no match between our eldest boy and our younger two.

LEXIE GUNN: And she just rang me and was like hysterical and was so upset and she just kept saying, "they gave us the wrong sperm. They don't, the boys don't match." And I was just, I don't know, I just couldn't believe it.

GRACE TOBIN: Has QFG provided any explanation at this point as to how this could have happened?

ANASTASIA GUNN: None whatsoever. At first, they relied on denial that ancestry or any other home DNA testing could be accurate. We then attended legally binding DNA testing that they used for legal paternity testing in Brisbane and tested all three of our sons. and that showed definitively that our eldest son does not share any DNA with our younger children. We provided that evidence to them in January 2023. They have reiterated that according to their documents they used donor 227 for our IVF and that donor 227 is the biological father of our children.

GRACE TOBIN: So, in the face of scientific evidence, QFG is just absolutely denying this has happened?

ANASTASIA GUNN: Yes, they have completely denied that this has happened. They have offered no rationale.

GRACE TOBIN: So how did you discover then who the real donor was?

ANASTASIA GUNN: Well, that was hundreds and hundreds of hours of work. So, this is a culmination of putting together a lot of different sources.

GRACE TOBIN: Their research has led them to another QFG donor. DNA testing shows the two younger boys match with children from donor 222.

ANASTASIA GUNN: So, we discovered donor 222 and donor 227 came in on the same day and delivered their specimens on the same day, and so it could have been swapped on that day.

GRACE TOBIN: Is it baffling to you that QFG to date has accepted no responsibility for what's happened?

LEXIE GUNN: Blows my mind, hurts my heart.

GRACE TOBIN: Do you think they owe you that?

LEXIE GUNN: They owe my children that and me that, my children are people not products. Like we're not talking about a pair of sneakers. Like I didn't go home and open up the box and they were the wrong brand of sneakers. These are my children.

GRACE TOBIN: QFG is owned by Australia's largest IVF provider, Virtus Health, which has clinics all around the country. In what's become a fiercely competitive and profitable industry, Virtus is the market leader. The fertility company was at the centre of a heated takeover battle in 2022… won by private equity giant BGH Capital.

EMERITUS PROFESSOR BILL LEDGER, OBSTETRICS AND GYNAECOLOGY, UNSW: Well, private equity is all about money, these are smart financial people. They wouldn't have bought into these clinics unless they thought they were going to make profit out of it.

GRACE TOBIN: What is driving that huge growth and interest?

EMERITUS PROFESSOR BILL LEDGER: We are providing a part of healthcare that people want in Australia now one in 18 births is an IVF birth. The fact is it's in great demand and if you are working in a business where the demand is huge, where the number of customers you have is huge, inevitably almost you will make money If you can provide something that's a decent value.

GRACE TOBIN: Three big players account for more than 80% of the industry's total revenue…

Virtus Health $285m

Monash IVF $220m

Genea $87.5m

EMERITUS PROFESSOR BILL LEDGER: I think it's good there are at least three. The advantage, if you like the concept of capitalism, they do compete and competition can improve quality and push down costs and so forth, so that's a good thing. The downside I guess, is that sometimes the corporates can be a little cold and a little distant and patients and people around patients get the sense that they're a number in a machine rather than a human being. And that's something it's all of our jobs to try and prevent.

GRACE TOBIN: Professor Bill Ledger is a fertility specialist with 30 years' experience in public and private IVF clinics. He's adamant when things go wrong patient care must come first.

EMERITUS PROFESSOR BILL LEDGER: We almost accept that occasionally error will happen. Each has to be dealt with very thoroughly, analysed deeply, change made to prevent it happening again. But if you have a clinic or clinics where mistakes keep happening, then there has to be a significant inquiry and that should be external and it should be visible and a hundred percent transparent, but then probably change has to be made.

GREETINGS: Hello (hugs) how was your day?

Not too bad.

GRACE TOBIN: Sisters Sophie and Amelia Hawkshaw — and their husbands Josh and Zach – are private people. But they feel compelled to speak publicly for the first time about their experience with one of the big three fertility clinics, Genea.

SOPHIE HAWKSHAW: I think people need to know that when things go wrong, this is what Genea does, this is how they treat people, this is the company you're getting into bed with. It was, yeah, just the two of us growing up with my parents and we're only two years apart you just have your own little world of play together as kids, it's always kind of been the two amigos of Amelia and I.

GRACE TOBIN: The sisters found out when they were teenagers that Amelia couldn't produce eggs.

AMELIA HAWKSHAW: And it meant that if I wanted to have a family, I would need, donor eggs from someone else.

SOPHIE HAWKSHAW: I kind of flippantly said, "Oh, I'll just give you some of my eggs. I'll just donate eggs."

GRACE TOBIN: More than a decade on from that promise, Sophie had her first baby. It meant she was then ready to start the process of donating her eggs to Amelia. The sisters went to a public fertility unit at Sydney's Royal Prince Alfred hospital. The low-cost clinic is state government funded and run in collaboration with fertility giant Genea.

SOPHIE HAWKSHAW: So, all of the patient care is done by RPA staff and all of the lab work is done by Genea, who are a private company that have a contract with New South Wales Health.

GRACE TOBIN: Sophie's retrieval procedure last August produced 22 eggs.

GRACE TOBIN: And when did you find out how many embryos you had?

SOPHIE HAWKSHAW: So, the next day is considered day one, and we found out that we had 17 embryos that had been fertilized and that was just so exciting. (laughs) It was such good news, I felt like my job was done.

AMELIA HAWKSHAW: Normally, we would get our next update on day three. We didn't get that far, so we got a call on day two, to say that the embryos had been contaminated with the bacteria. and so, it was those 17 that had to be destroyed, just all of them.

GRACE TOBIN: What did those 17 embryos represent to you?

AMELIA HAWKSHAW: Those 17 embryos, I think they were all like potential children that we could have had.

ABC NEWS (August 2023): A SYDNEY HOSPITAL HAS BEEN FORCED TO DESTROY EMBRYOS BELONGING TO IVF PATIENTS.

GRACE TOBIN: Within days, their personal tragedy was thrust into the public spotlight.

SOPHIE HAWKSHAW: It felt almost like a betrayal because it was our story, I just wanted to scream like, "That's us that you're talking about."

GRACE TOBIN: Privately, the sisters were struggling to find out what exactly had gone wrong.

AMELIA HAWKSHAW: The doctor said at the time, um, that because it was something that had happened in the lab, uh, it was an issue for Genea rather than the public hospital. Uh, uh, they said that, uh, I would be called, uh, by Genea to organise the next steps.

GRACE TOBIN: Genea told them an investigation was underway… and that two other families had also had their embryos destroyed.

VIKKI MULLER, IPHONE VIDEO: Ok here we go again ready to make a baby, hopefully the last one the last round, come on baby making. (laughs)

VIKKI MULLER: Good and bad emotions when I look at that. So, I remember being excited, but at the same time very hesitant.

GRACE TOBIN: Vikki Muller had her egg retrieval in the same week as Sophie. She got two eggs which turned into two healthy embryos.

GRACE TOBIN: But during the procedure, a blood vessel was pierced, and Vikki suffered an internal bleed.

VIKKI MULLER: Probably the worst pain I've ever been in my life, to be honest.

GRACE TOBIN: In so many of those photos, though, you're smiling and holding up two fingers?

VIKKI MULLER: Oh — do you know what, 'cause it was the best result I've got. I mean this is the best result we've got in five years like I was in so much pain, but I was so, I felt so strong. I still felt really optimistic, and I I was proud of myself, you know, I was proud of myself. I got 100%, you know.

GRACE TOBIN: It was Vikki's fourth round of IVF. She and her partner Chris were forced to delay trying for a baby after he was diagnosed with prostate cancer a few years ago.

CHRIS HOMER: I want to see my partner happy, and that's part of why this journey's been so difficult.

GRACE TOBIN: The couple was told about Genea's lab contamination when Vikki was recovering in hospital – their precious two embryos had to be destroyed.

GRACE TOBIN: What did those two healthy embryos represent to you?

VIKKI MULLER: They were like gold to us.

CHRIS HOMER: When it dawned in the hospital, it just became a source of anger, frustration, sadness, heartbreak, it's all milling around you know.

GRACE TOBIN: Genea told them bacteria in the embryology solution was believed to be the likely cause. Vikki and Chris pressed Genea for more information.

VIKKI MULLER: It was like as soon as we got discharged from hospital, we were non-existent. They basically made me feel like a bad person for wanting to have a baby.

CHRIS HOMER: You know, when I asked for what really happened, and there was just a bit of this, the media was infected and well, I already know that, how on earth does a company like you supply such an important service for an IVF process in dealing with people's lives and families? How on earth does that get infected? Just delve a little bit more into that to me, please. Was someone not wearing gloves handling it like PPE? I mean what happened?

JOSH PERSSON: But also, like we're entitled to understanding what's gone wrong, right, like we are allowed to have an answer.

GRACE TOBIN: Sophie and Amelia – and their husbands Josh and Zach – have also been demanding answers on how such a critical error could occur.

ZACH LONGE: It's our information. That's right. (Yeah). That's what we went through.

GRACE TOBIN: Early on, Genea indicated there was a staff member with dermatitis on their hands working that day. But it wouldn't share the full details.

AMELIA HAWKSHAW: So, it's clear that human error was involved in the incident, and human error does happen but for us, what's really caused the trauma and kind of affected us long term has been how we've been treated, uh, since the incident occurred.

GRACE TOBIN: How difficult has it been to extract information from Genea about what went wrong?

AMELIA HAWKSHAW: Impossible. Absolutely impossible.

GRACE TOBIN: Genea has refused to give the families a copy of its investigation – known as the Root Cause Analysis. The fertility giant told them it won't hand over the report due to the presence of "sensitive private patient data and confidential commercial information".

GRACE TOBIN: How did you feel reading that as the reason why you couldn't know what happened?

VIKKI MULLER: Oh, that's absolute rubbish. That's just protecting themselves. That's going into damage control. Give me some information and some answers, regardless of if you are private or public, it's my body, it's our embryos that you destroyed or didn't look after. How difficult is it to be honest and open to someone? I don't understand.

GRACE TOBIN: Vikki and Chris have teamed up with the other couples to hold Genea to account. They've enlisted the help of a state MP.

JACQUI MONROE MLC: They deserve to know exactly what happened to the embryos they thought would develop into families.

GRACE TOBIN: They're hoping political pressure will force Genea and NSW Health to be transparent about what went wrong.

SOPHIE HAWKSHAW: We are fighting so hard to get that Root Cause analysis so Jackie Monroe, who's an MLP in the upper house, she did a motion, um, for the documents relating to our case to be publicly released.

JACQUI MONROE MLC: This is a profoundly personal and devastating experience.

SOPHIE HAWKSHAW: It's taken going to Parliament to get access to our own medical information.

ZACH LONGE: I think it's absolutely ridiculous that this is how far we've had to take it.

GRACE TOBIN: Private equity-owned companies like Genea and Virtus Health benefit hugely from Australia's generous Medicare system. An IVF cycle at one of these big clinics can cost between 10 to 12,000 dollars. About half of that cost is covered by taxpayers.

KARIN HAMMERBERG, GLOBAL AND WOMEN'S HEALTH, MONASH UNIVERSITY: The truth is that the shareholders benefit from, from the Medicare payments as well. I think it would be expected that there would be transparency.

GRACE TOBIN: Fertility researcher Karin Hammarberg has 20 years clinical experience in IVF. She says corporate clinics should be held to account when things go wrong.

KARIN HAMMARBERG: If there has been an, and it's established that there has been a mistake, transparency I think it's, it is always the best way to, to manage it. And, and obviously acknowledging that something bad has happened and, and what can be done in the future to avoid that it happens again.

GRACE TOBIN: There is a national regulator – the Reproductive Technology Accreditation Committee… but it isn't independent, it's run by industry peak body, the Fertility Society. RTAC's primary role is to audit clinics through a Code of Practice and grant licenses… which allows them to claim Medicare rebates.

GRACE TOBIN: Is it even more important then that these corporate clinics that are receiving taxpayer dollars are being accountable and transparent?

EMERITUS PROFESSOR BILL LEDGER: Yes, it is. To my mind it's quite unique that taxpayer money is transferring pretty much directly into private equity companies via a healthcare provision, it's a system that has evolved, it's changed organically over the years. Maybe it's time for a major review just to ensure it's all functioning as it should.

KATHERINE DAWSON: I thought it was pretty cool that I was made in a Petri dish and in a lab and I was frozen for possibly seven years. Like that sounds like sci-fi, didn't have any interest in finding out who the donor was. I assumed he'd be a nice, generous, healthy bloke because that's what they advertise. That's what they tell you they use. That's what everyone believes. That's what you would think is, is legislated that is used. You don't think there's any lies.

GRACE TOBIN: Katherine Dawson has discovered she's at the centre of an unbelievable bungle involving two of Australia's biggest fertility companies.

DNA testing has revealed poor vetting practices allowed her donor father to donate sperm under multiple different names… with alarming consequences.

GRACE TOBIN: How many names did he tell you that he donated under?

KATHERINE DAWSON: I think that there were seven including his own.

GRACE TOBIN: So, how many half siblings do you think you might have?

KATHERINE DAWSON: So, at this stage I think, and I estimate that there could be up to 700 siblings.

GRACE TOBIN: It sounds far-fetched… but Katherine says the evidence continues to stack up.

KATHERINE DAWSON: So he pretty much said to me when I met him he said all of the fake names that he used and that he went to 6 clinics and 4 hospitals so I might not have wanted to believe him and there might be reason not to believe him, but I've already found siblings across 3 different codes.

GRACE TOBIN: Those three codes are from Melbourne IVF, which is owned by Virtus Health… and the ASX-listed Monash IVF. So far, Katherine says sibling lists and DNA results have delivered matches for 56 half-siblings.

TikTok VIDEO: It's totally possible your mate's sister could be my sister thanks to clinics not checking or verifying identification.

GRACE TOBIN: She's using social media to track down as many half-siblings as she can.

TikTok VIDEO: What's the threshold for thinking something's not quite right.

GRACE TOBIN: It's not just the daunting number of half-siblings that worries Katherine…

TikTok VIDEO: How about we let each other know so we don't date or have kids together.

GRACE TOBIN: …there's an urgency to her search.

TikTok VIDEO: I have medical information for my siblings that I really need them to have that could save their life.

GRACE TOBIN: As Katherine's connected with more and more half-siblings, she's learned of a bowel cancer risk. She says the donor also has schizophrenia.

GRACE TOBIN: Why do you feel a responsibility to find and contact each of those potentially 700 siblings?

KATHERINE DAWSON: I can't live with myself if I don't try to get that information to them.

GRACE TOBIN: But why is it your job to get that information to them?

KATHERINE DAWSON: It's, it's not my job, but the clinics won't do it. The clinics have had seven years.

GRACE TOBIN: Melbourne IVF has told Four Corners it wrote to recipient families in 2019 and 64% of them received the letter. But the clinic didn't say what health information it had passed on.

KATHERINE DAWSON: The clinics will only send a letter to my siblings' parents, the person who had the treatment to an address that's potentially 20 to 40 years old.

GRACE TOBIN: Is it fair enough though to say that the clinics have made some effort to contact your siblings?

KATHERINE DAWSON: I think making an effort is very different to what they can do and what they know they can do. They can use Vanish, which is a service to find their updated addresses. They absolutely know they can use Vanish.

GRACE TOBIN: Monash IVF told Four Corners it treats any new health concerns raised by its donor-conceived people seriously and sensitively – and that it must comply with its legislative obligations.

KATHERINE DAWSON: If someone had information for you that could save your life, how would you feel knowing that the clinics that created you and market you as a special gift, a miracle and they're blocking you from having it. They're worried about the dividends that go to shareholders, not the human products that are on the other end of the treatments.

GRACE TOBIN: Katherine has complained to the industry-funded regulator, RTAC that both clinics are withholding vital health information by not doing more to directly contact her half-siblings. She's begged RTAC to act.

GRACE TOBIN: What did RTAC say in response to your complaint?

KATHERINE DAWSON: In response to my formal complaint, they've said that all they can really do is strongly encourage the clinics to act. There's millions going into making these babies, but nothing going into protecting them.

GRACE TOBIN: Are you surprised that the regulator can't do more in these individual cases?

PROFESSOR BILL LEDGER: Keep in mind that these cases are rare and RTAC has not been set up to deeply investigate, regulate in individual practice. That's not its role. It does a good job, but its job is limited by the rules it works under and so perhaps there's a need for a system that is novel to regulate that part of the industry.

GRACE TOBIN: Lexie and Anastasia Gunn have also complained to the regulator – but RTAC doesn't investigate matters it considers historical because they predate its current Code of Practice. The couple is now suing their IVF clinic, the Queensland Fertility Group.

GRACE TOBIN: So, Anastasia you're a family of 5 living in a farming shed now. Was that the plan?

ANASTASIA GUNN: No not at all, we'd saved up money to do our house extensions and framed out the kids' bedrooms and had everything ready to go but now we're using all our life savings basically to fight QFG and the legal system.

GRACE TOBIN: QFG told Four Corners it's keen to work with the family to find a 'mutually acceptable resolution', but it wouldn't comment on the details of the legal claim while it's before the court.

LEXIE GUNN: They were hoping we would just go, it's in the too hard basket and run away or run out of money.

GRACE TOBIN: And instead?

LEXIE GUNN: Instead, I would sell my kidneys to fight this.

ANASTASIA GUNN: Oh, I think it's a very dangerous thing to underestimate all mothers, but particularly mothers of children with disabilities. I think they've messed with the wrong women.

GRACE TOBIN: Four Corners is aware of another allegation that QFG used the wrong sperm to conceive children. Queensland's Office of the Health Ombudsman is investigating both complaints as well as systemic issues across the state's entire fertility industry.

KARIN HAMMERBERG: In the end, if mistakes have been made, they will be unearthed at some point. and bad publicity. No one wants bad publicity. So, denial I guess is perhaps one way of trying to avoid a problem, but in the end, it'll probably come back and you know, bite you anyway.

GRACE TOBIN: Single mum Danielle Patorniti is fighting her own battle against QFG.

DANIELLE PATORNITI: when you have a clinic that continues to be deceitful, and not tell full stories, that's what really, really annoys me.

GRACE TOBIN: She's on her way to meet two other women who she's discovered used the same sperm donor to start their families. Between them, they have four kids – all off-spring of the same donor. The half-siblings have almost identical disabilities including moderate to severe autism.

GRACE TOBIN: Has there been any admission from QFG that this is genetically linked to the donor, potentially?

DANIELLE PATORNITI: QFG deny everything, even with three different mothers, the same donor, four children with allied health reports that pretty much read word for word, there's still no admission that it's anything to do with what they're selling.

GRACE TOBIN: Danielle first realised there was a potential issue with QFG's sperm donor when she connected online with single-mum Nikita.

NIKITA TAYLOR: Hi.

DANIELLE PATORNITI: Hi, nice to finally meet you. Come take a seat.

NIKITA TAYLOR: Thanks.

GRACE TOBIN: The women haven't met face-to-face before…

DANIELLE PATORNITI: Finally good to see you though, what has it been like 3 years or something?

GRACE TOBIN: but they've been swapping medical information about their sons since 2021.

DANIELLE PATORNITI: We actually did a comparison. So, we actually wrote down my son's conditions, her son's conditions, and we were like, it's like looking in the mirror.

GRACE TOBIN: Concerned it was more than a coincidence, Danielle and Nikita asked QFG to share information about their sons' matching health issues with other families.

NIKITA TAYLOR: We begged them at different points — phone calls, emails. Just asking — can you please pass this information along, sharing how important early intervention is, sharing that 'yes, we understand we haven't got a proven genetic link', but what's the harm in sharing this information?

GRACE TOBIN: Then, late last year, they found Maree. Her daughter had recently been diagnosed with autism… and her 4-year-old son's diagnosis was pending.

DANIELLE PATORNITI: When Maree told me about her children, um, I literally felt sick. I had goosebumps all over my arms. Um, it just felt like for those three years that we had been fighting was sort of like just, yeah, she'd missed out on those years.

GRACE TOBIN: So, during those years that you are advocating pushing for QFG to tell other families, Maree was none the wiser?

DANIELLE PATORNITI: Yeah, it was quite horrifying, to be honest.

MAREE ANDERSON: You know I wouldn't change my kids for the world. I love them and I'm so grateful, went through a lot to have them, but I feel that all of the information that could have been shared has not been shared to me.

GRACE TOBIN: Is that frustrating?

MAREE ANDERSON: Yeah, it's frustrating our children all share half, half of the same DNA. They're all experiencing similar challenges. I don't think the duty of care ends when the baby is born.

GRACE TOBIN: Have you asked QFG why you weren't informed about the other two boys?

MAREE ANDERSON: I have, yeah, and they've never specifically answered that question.

GRACE TOBIN: QFG has told Four Corners its geneticist advised them there was no clinical requirement to notify other families of the diagnoses of Danielle and Nikita's boys. It wasn't until months after Maree contacted the clinic about her children — that QFG decided it would advise patients, but only about the autism diagnosis.

But following further questions, QFG conceded to Four Corners that there is still one family it hasn't informed.

DANIELLE PATORNITI: There is apparently a la- someone that's pregnant, and there's three embryos that have been created sitting in a freezer ready to make another three families.

GRACE TOBIN: So, there are still children now being born by using this donor?

DANIELLE PATORNITI: Yes, after us fighting and pleading and carrying on for years and years on end, uh, the semen has never been destroyed. It's continuing to be sold as probably gold class Australian sperm. I just don't understand how they can create kids with something that there's a higher chance of it turning into disability. It's just money. It's all it is.

GRACE TOBIN: QFG says the donor sperm is still available for family extension – in other words, for patients who've already used the donor and want more children.

GRACE TOBIN: Why wouldn't the clinic stop using a sperm donor in those circumstances?

KARIN HAMMARBERG: I can't quite understand that, it would seem, unless it is proven that it's not linked to the sperm donor, I think you have to presume that it might be.

VIKKI MULLER AT GYM CLASS: alright let's go.

GRACE TOBIN: Ten months on from Genea destroying her two embryos, Vikki is trying her best to stay optimistic. But time is precious. She's now with a new fertility clinic after turning down Genea's offer of a free cycle through the public system.

VIKKI MULLER: (phone rings) Hello Vikki speaking

GRACE TOBIN: Today, Vikki is receiving the results of a blood test to see if she can go ahead with another IVF cycle.

VIKKI MULLER: Hey Chris… not starting

CHRIS HOMER: not starting?

CHRIS HOMER: More bad news. it's alright babes…hang in there.

VIKKI MULLER: just annoying takes forever to get back to the bloody starting line

AMELIA HAWKSHAW The trauma is still there but we're hoping to be moving on with growing our family which we're really excited about, and can I share my good news?

GRACE TOBIN: Oh, I would love you to share your good news.

AMELIA HAWKSHAW: Are you okay if I share this, good? Okay, but we're really pleased that we are actually pregnant, at the moment, so we're expecting in November, which is really huge for us.

GRACE TOBIN: Congratulations.

AMELIA HAWKSHAW: Thank you.

GRACE TOBIN: Sophie and Josh are also expecting their second child at the end of the year.

AMELIA HAWKSHAW: Wonderful to have a nephew coming soon. I think what's important to me now is that that, that patients are supported in the future if something like this were to ever happen again.

GRACE TOBIN: It's an important day for Sophie and Amelia.

SOPHIE HAWKSHAW: This is a good day… an exciting day

GRACE TOBIN: They're meeting Vikki at NSW Parliament, hoping they'll finally gain access to Genea's investigation findings. They've all invested so much hope that the parliamentary process will force Genea's hand.

VIKKI MULLER: How are you? look at you, let's go shall we?

GRACE TOBIN: But Liberal MP Jacqui Munro doesn't deliver the news they're anticipating.

JACQUI MUNRO MLC: Essentially the government has declined to provide further information from Genea. So, at this stage, we've asked for the root cause analysis report, but the government haven't pressed Genea to actually release that information.

GRACE TOBIN: The women are told Genea has raised 'significant concerns' with NSW Health about the public release of the Root Cause Analysis.

JACQUI MUNRO MLC: The reason that it's so important that we have these documents, of course, is because when the public system partners with the private system, there must be accountability and transparency in that agreement and that arrangement.

GRACE TOBIN: They're no closer to finding out the truth.

SOPHIE HAWKSHAW: What's what does this RCA have in it that they're trying so hard to prevent us from seeing?

GRACE TOBIN: For them, the lack of transparency is crushing.

VIKKI MULLER: Its exhausting and it's frustrating.

AMELIA HAWKSHAW: I want to keep going if we can.

SOPHIE HAWKSHAW: We're not going away if it takes going to parliament. if it takes going to court, we're not going away.

GRAPHIC: Genea told Four Corners it has been "transparent about the incident with all stakeholders…" and has "engaged in open disclosure with the patients….".

The Fertility Society told Four Corners it "recognises the criticisms regarding (RTAC's) effectiveness as an industry regulator".

It's announced, "a comprehensive review of governance and standards" within the sector, "focused on enhancing accessibility to safe and effective fertility treatments for families".