Mum and dad share heartbreaking story to help Red Nose Australia
Australian couple Lauran and Alex were very much in the 'if it happens, it happens' camp when they discovered they were expecting baby Theo four months before their wedding.
At their wedding, Lauren was 18 weeks pregnant with Theo and two weeks later the couple had the routine 20 week scan.
'I got a call from the doctor with my ultrasound results. She said everything seemed to be fine [ …] but his kidneys were looking a little bit larger than they should at this stage of the pregnancy,' Lauran told news.com.au.
'She said it was a totally normal thing that could show up on an ultrasound. He might have just needed to empty his bladder at the time.'
But the doctor decided to refer the couple for another scan at 28 weeks. The conversation raised some concern for the first-time parents, but given the way doctors were treating it, and the large gap between scans, they weren't overly worried. Lauran said up until that point it had been a pretty 'cruisy' pregnancy.
She said as things progressed over the next eight weeks, she was told Theo would settle into his own routine — for instance, it was expected he would kick at the same time each day. Lauran was also told her placenta was at the front so she wouldn't feel her baby moving as much. She did feel small kicks during that time, which also reassured her.
'During that eight weeks, everything that I thought I felt appeared to be normal because of how much they emphasised the routine and being told I wouldn't feel much movement due to the anterior placenta,' she said.
'It's good they give you that information, but it's also not very helpful when you haven't experienced a pregnancy before and there is something wrong.'
At the 28-week scan, the family received the devastating news that Theo likely wouldn't survive if he was born.
The couple were sent to the foetal medicine unit at a different hospital for this ultrasound, initially not realising it was where high risk pregnancies were often sent.
'When we entered the room there was a doctor in the room with the stenographer as well, and that's when we both thought it was unusual,' she said.
'She was scanning for a while, and we just remember her asking if we knew why we were there.'
Alex said on the big screen where the ultrasound was being displayed he just remembered seeing big black empty spaces the couple hadn't seen before during Theo's three previous ultrasounds.
'I just remember thinking, 'That can't be good',' Alex said.
It was explained that Theo's kidney problem had gotten worse, and the specialist came in 10 minutes later to speak to the couple. They said it felt like forever, and thought worst case scenario, Theo might need to have a kidney donated or be on dialysis when he was born.
The specialist did another ultrasound.
'When he finished, he did this big sigh and said, 'let's have a chat.' As soon as he said that, we knew it wasn't good news,' Lauran recalled.
It was explained there was a blockage between Theo's kidneys and his bladder, so he wasn't able to pass urine at this time or swallow any amniotic fluid. They then said that Theo's kidneys and bladder were 'basically destroyed'. It was further explained that the amniotic fluid is essentially swallowed, then passed as urine and that process is repeated over and over so that babies can practice using their lungs.
'It's basically this big chain reaction effect of everything being underdeveloped. There was very little amniotic fluid in the sac, so it meant he was stuck in one spot the entire time. His legs were all squished and deformed as well,' Alex said.
'The doctor said if Theo was to be born, it wouldn't be compatible with life.'
Lauran broke down into tears and Alex squeezed her tight as the specialist, who the couple called 'incredibly kind', explained their options. This included to continue with the pregnancy and spend some time with Theo while he was alive — not knowing how long that would be but the little boy would be in a massive amount of pain. The second option was, once Theo was born he would be taken and doctors could do everything they could to try and help him. The third option — which they were told most couples in this situation chose — was to interrupt the pregnancy and have Theo be born not alive.
Alex said it was pretty clear that there would be nothing doctors could do if Theo was born, and in order to not put Lauran through 12 weeks of pain to essentially be a life support machine, there was no choice. The couple decided to spare both Theo and Lauran the pain after thinking through their options.
'We were left in this room and we took turns crying our eyes out,' Alex said.
It was a Friday on a long weekend, and the couple left the hospital the most 'fragile, husks' of people. Their life had been turned upside down in a matter minutes, and they just sat in silence not knowing how to function. They broke the news to their families, who rushed to be by their side from other states.
The following Friday, the procedure took place to stop Theo's heart. Lauran had to carry him in the womb for another two days following that before being induced. After Theo was delivered, the couple had an entire day and night with him. Photos were taken of Theo and his parents thanks to Heartfelt, a volunteer organisation that takes photos of stillborn babies. He was kept in a cool cot to stop him from deteriorating.
'It's horrible having to think, you want to cuddle your child as much possible but you need to also keep them cool because you don't want to see them deteriorate,' Lauran said. 'It was a lot.'
Lauran, Alex and their parents had a moment to celebrate Theo at a nature park where the couple spent a lot of time during the pregnancy. A small plaque was also added.
'We've made it Theo's park that we visit all the time. We have his garden, it's more like an ornament garden, and we get a special ornament for his birthday or Christmases,' she said.
Friends and family also add to the ornaments, often purchasing a little something for Theo when they travel. It's the way they keep Theo's memory alive, and let Lauran and Alex know they are thinking of him. There are pictures of Theo around the house, and Lauran created a journal to write a letter to Theo every year on his birthday. The journal is available for other parents going through a similar experience to purchase, with Theo's story inside — another way for the couple to keep his memory alive.
The family – who has since welcomed another baby, a little girl named Melanie – just celebrated Theo's second birthday in June. Lauran said during her pregnancy with Melanie, she was plagued by a constant fear of everything that could go wrong. Lauran said it was an anxiety-filled nine months.
Alex and Lauran are sharing their story in honour of Red Nose Day, which takes place on August 28. Red Nose Day is designed to raise funds for Red Nose Australia, which helps support parents who have been through sudden and unexpected death of infants and children.
The couple revealed between Theo's ultrasound and the procedure to stop his heart, they met with the hospital social worker who introduced them to Red Nose Australia.
'She spoke about the Hospital to Home program, which is where they connect you with a Red Nose bereavement support worker,' Lauran said.
'I knew about Red Nose, but mostly the safe sleep portion of it. I didn't know they did bereavement work until I was in the situation where I needed it.'
The day after coming home from the hospital, the couple had their first Zoom sit down. Lauran called the experience validating, because the support workers often experience loss.
'It made us feel normal,' she said.
After the Hospital to Home program, the couple opted to see another bereavement counsellor from their state that was also through Red Nose. This was because they knew they wanted to try again for Theo's sibling, and they knew they would need support due to the anxiety and fear the pregnancy would create. They stopped this process around Theo's second birthday, as there are limited spots and they wanted another family to get a place.
'Our transition on bringing Lanie in the world — we wouldn't have been able to do that without Red Nose and their support — having someone to support us and validate us through our grief,' Lauran said.
The funds raised during Red Nose Day helps provide around the clock support services through the Red Nose's 24/7 Grief and Loss Support Line, provide education for new parents and helps fund vital research that helps uncover the cause of infant deaths.
This year, there will be the 'Red, Set, Go!' 3km-a-Day Challenge throughout August, and people are encouraged to host a fundraiser, shop merchandise and donate.
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To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. 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The Age
13 minutes ago
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Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics
Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 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As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'
ABC News
7 hours ago
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TikTok and online games driving surge in Defence Force recruitment
Targeted advertising on social media and in online games has helped deliver a boost to Australian Defence Force recruitment, offsetting a perennial problem of declining service rates. Figures from the federal government show the permanent and full-time headcount reached more than 61,000 personnel, reflecting an annual increase of almost 1,900 people, the highest in 15 years. Year-on-year, it reflects a 17 per cent increase in the number of people joining the ADF, which Defence Personnel Minister Matt Keogh attributed to "smarter" career advertising. "So, doing that advertising in games, in computer games, utilising TikTok," he said. "Making sure that we're focusing on having that advertising presented where our target age groups are, so they are seeing those messages and they're seeing the breadth of role types that are available across the Australian Defence Force." Fewer than 10 per cent of the more than 75,000 people who applied ultimately enlisted in the ADF. Of the more than 7,000 people who joined the ADF, around half were in the Army (3,442). This took its headcount to a four-year high. Enlistment in the Navy (1,524) and Air Force (2,093) saw their respective overall headcounts reach their highest levels since 2006. Mr Keogh partially attributed a broadening of entry eligibility for a five-year high in applications. "We had a situation before where medical conditions like acne could automatically exclude someone from being able to enlist," he said. "Clearly that's stupid in the 21st century. "We're now making sure that our eligibility requirements match the more than 300 different types of roles that are available in the Defence Force. "So, if you're doing something like cyber ops, you know, you're working out of a basement, you're never leaving Australia, we don't need to have as strict requirements as might be required as someone who's going to be in an infantry force that's going to be deployable outside of Australia." The median age of recruits was 23 years. Mr Keogh and ADF chief of personnel Natasha Fox said responding to the Veterans' Suicide Royal Commission had also helped bolster people's willingness to join the military. Defence has long struggled to recruit and retain personnel, in part due to accusations about the culture within the ADF. So, the government has also trumpeted a decline in the rate of people leaving the ADF, down from 11.2 per cent in 2021/22 to 7.9 per cent — the lowest rate in a decade. Figures released last year showed the ADF had a shortfall of around 4,400 workers. It remains unclear to what extent that has been reduced in the past year's intake. But officials have insisted the government was on track to reach its target of 69,000 permanent workers by the early 2030s. "We're also conscious that we have more work to do in this area as well," Mr Keogh said. A year ago, the government announced foreign nationals would be able to serve in the ADF in a bid to boost recruitment. Initially starting with New Zealanders, Australian permanent residents from the UK, US and Canada (members of the so-called Five Eyes intelligence sharing network) are now eligible to apply to join the ADF. But so far, only three New Zealanders have enlisted. Figures from the government show a further 70 people are in a pre-enlistment phase, and are expected to officially join in the coming months. As of July 13, there were 520 active applications from Five Eyes citizens, of which 400 were from New Zealand. The United Kingdom had the second most applicants, followed by the United States and Canada.
