Sunday, December 22, 2024

‘We got the wrong sperm’: Anastasia and Lexie are living an IVF nightmare. The clinic won’t take responsibility

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Anastasia and Lexie Gunn love their three children no matter what, but the mystery of what went wrong with their conception at one of Australia’s biggest fertility clinics haunts them.

“We had IVF and got the wrong sperm,” Lexie said.

“It’s shattered what we all believe to be true.”

Their three sons were conceived through donor sperm at the Queensland Fertility Group (QFG) between 2006 and 2014.

The couple paid for the same donor to be used for each child.

But DNA testing now shows their oldest son is not biologically related to their two younger boys, who have both been diagnosed with serious health conditions.

Anastasia and Lexie discovered their two younger children aren’t related to their older brother.(Four Corners: Ron Foley)

“It’s a catastrophic error … how could they have used the wrong sperm to make children?” Anastasia said.

A Four Corners investigation into the lucrative IVF industry has found when things go wrong corporate giants like QFG don’t always own up. There’s a lack of transparency and companies aren’t being held to account.

‘There was no match’

When Anastasia selected a sperm donor for her family in 2006, she took great care.

“I went to QFG and they had a big book with the donor profiles.”

“There’s an age bracket for the donor, their educational background … and the health history as well. Medical background was definitely of concern to me.”

Anastasia decided on Donor 227 – a fit, healthy Caucasian male aged 25 – 30 years old.

A woman stands in a room with bookshelves behind her. She is looking up and has her hands on her hips.

Anastasia says what happened was a “catastrophic error”.(Four Corners: Ron Foley)

Four years after their first son was born, Anastasia and Lexie decided to have more children.

“We contacted QFG to check that we could use the same donor,” Anastasia said.

“We wanted them all to have the same biological father to tie them together so that then when they have children, their children are all tied together with biological history.”

The couple had two more sons, born two years apart. Both had serious health issues from birth.

“Our middle child is diagnosed with hypermobile Ehlers-Danlos syndrome,” Anastasia said.

“Our youngest son … has joint hypermobility syndrome also. He also has a diagnosis on the autism spectrum and ADHD.”

A young boy and two toddlers sit,arms around each other, on the edge of a kiddie pool. They are wearing bathers.

The couple’s three children when they were younger.(Supplied)

As the diagnoses kept adding up, Anastasia and Lexie wanted to find out if other children of donor 227 had similar problems.

They sent their sons’ DNA to an ancestry website to connect with other families.

The results floored them.

“I was completely perplexed,” Anastasia said. “I could see that there was no match between our eldest boy and our younger two.”

At first, QFG doubted the reliability of DNA results from the ancestry site.

Anastasia and Lexie then had their children tested at an accredited DNA testing lab used by the Family Law Court. Those results were the same.

“[QFG] have not provided any response to that legal DNA testing whatsoever,” Anastasia said. “They have offered no rationale.”

QFG maintains that its records show the same donor was used for all three children.

Profits over transparency

QFG is owned by Australia’s largest IVF provider, Virtus Health, which has clinics all around the country.

The fertility giant was taken over by private equity firm BGH Capital in 2022 following a heated bidding war.

Embryologist and IVF Patient Advocate Lucy Lines said the big business of baby-making has changed the way corporate clinics respond to mistakes.

“I suspect that possibly profits are impacting the way these things are handled,” she said.

Emeritus Professor Bill Ledger, a fertility specialist who’s worked for 30 years in public and private IVF clinics, said transparency is vital when errors occur.

“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 per cent transparent,” he said.

There is a national regulator, the Reproductive Technology Accreditation Committee (RTAC), but it isn’t independent. RTAC is part of the industry-funded peak body, the Fertility Society of Australia and New Zealand.

RTAC’s primary role is to audit clinics against a Code of Practice and grant licences which allows IVF companies to claim millions of dollars in Medicare rebates.

“RTAC has no power to govern the corporate nature of IVF,” Ms Lines said.

“It looks after the scientific and the medical side of the clinics. And they’re very well respected in that space, but when it comes to the corporate decisions of the businesses, they don’t have that power.”

‘Gold class Australian sperm’

Single mum Danielle Patorniti has her own battle against QFG. She’s fighting to warn other parents.

A woman rests her head in her hand as she

Danielle wants QFG to alert other parents who’ve used the same donor.(Four Corners: Ron Foley)

Danielle’s son was conceived with donor sperm. He was diagnosed with level 3 autism spectrum disorder, the most severe form, as well as hypermobility, ADHD and apraxia of speech.

In 2019, she informed QFG of her son’s medical update.

“Early intervention is so important,” Danielle said. “I thought there was a process where the information was passed on [to other families].”

At the time, QFG told her there were no other reports of medical issues with the donor’s offspring.

Two years later, Danielle connected with another mum who’d used the same donor to conceive her son.

Nikita Taylor’s child also had a diagnosis of autism spectrum disorder, speech delays and ADHD.

“We started comparing them … and they were almost identical. Different severities but identical presentations,” Nikita said.

“That’s when we started getting worried that other families needed to be contacted.”

A tiny newborn baby being held by a person holds onto their finger with his hand.

Nikita Taylor’s son as a newborn.(Supplied)

Danielle and Nikita asked QFG to share information about their sons’ matching health issues with other families.

But QFG determined there was no clinical requirement to notify patients.

“They pretty much told us it is just something that happens, ‘autism is a neurological condition, it happens to lots of kids’. And we just continued to say ‘this is just not autism, though. We are talking about apraxia of speech, we’re talking about motor dyspraxia. We’re talking about severe anxiety’,” Danielle said.

Late last year, they connected with a third family who used the same donor.

Maree Anderson’s daughter had recently been diagnosed with autism spectrum disorder as well as speech difficulties, anxiety and was being assessed for ADHD. Her four-year-old son’s autism diagnosis was also pending.

“When Maree told me about her children, I literally felt sick,” Danielle said.

“It just felt like for those three years that we had been fighting, she’d missed out on those years.”

A close-up of a sleeping baby. She is wearing a pink beanie.

Maree’s daughter was also conceived with the donor’s sperm.(Supplied)

Months after Maree informed QFG about her two children, the fertility giant finally decided other families with donor conceived children should be informed, but only about the clinical diagnosis of autism.

“I did ask about why I wasn’t told about all of this other information, and they’ve never specifically answered that question,” Maree said.

“There’s been things that have been uncovered that weren’t disclosed and I think QFG are forgetting that these are people, these are children, born thanks to them, and I’ll be forever grateful for that.

“I don’t think the duty of care ends when the baby is born.”

The donor is still being used by QFG to conceive more children.

In a statement, QFG told Four Corners the donor sperm is only available to patients who’ve previously used the donor and now want more children.

“Patients … are required to undertake further clinical and genetic counselling so they have all relevant information to make informed decisions as to whether to proceed.”

Three women stand on the deck of a house. The woman in the middle has her arms around the others.

Nikita, Danielle and Maree want QFG to act.(Four Corners: Ron Foley)

The three mums are extremely concerned.

“There is apparently someone that’s pregnant, and there’s three embryos that have been created sitting in a freezer ready to make another three families,” Danielle said.

“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.”

Following further questioning by Four Corners, QFG conceded that there is still one family who used the donor who it hasn’t informed of the diagnoses.

Regulator review announced

Anastasia and Lexie Gunn are now suing QFG in an attempt to hold the clinic to account.

The fertility giant refuses to concede it used the wrong sperm to conceive two of their children.

QFG told Four Corners it’s unable to make public comments about the details of the Gunn family’s legal claim while they are being considered by the court.

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