In the business of hope: Does IVF offer couples false sense of security?
IT IS marketed as the simple solution to fertility problems. But for every happy story of conception using IVF there are horror stories.
“I REALLY felt in my core that a mother was what I was supposed to be,” 43-year-old Aileen* says. “I could not imagine that it wouldn’t happen.”
We’re sitting in her cosy suburban house. The kitchen is full of dried herbs and jars of homemade pickles. Bags of Aileen’s knitting are strewn on the couch alongside a handsome tabby cat named George. It’s a homely, inviting scene but no children live here.
After getting hitched to her partner Ryan* in 2004, the pair started trying to conceive.
“We then had a couple of years of just waiting to see what happened and nothing happened,” Aileen recalls.
That’s when the pair took a well-trodden path and turned to assisted reproductive technology (ART), a term that includes a whole raft of fertility treatments including in vitro fertilisation (IVF).
Things started out promisingly. Aileen got pregnant after her first intra-uterine insemination.
“It seemed astoundingly easy. Then of course we went to the first ultrasound,” she says.
That seven-week ultrasound showed their embryo had no heartbeat. Aileen’s gynaecologist decided they would “let it [the dead embryo] come away naturally”.
Without knowing quite what else to do, Aileen went back to work.
“I walked around the office for three weeks with a dead embryo inside me,” Aileen says. “It was like a bomb waiting to go off inside me.”
The miscarriage did eventually happen and Aileen ended up in hospital on a morphine drip. She describes it as a “fairly devastating first experience”.
Some weeks later Aileen was at work when she got a call from her fertility specialist who promptly told her: “By the way, you had a little boy and he had a chromosomal heart defect. That’s why you lost him.”
When Aileen later tried to explain to that fertility doctor in a face-to-face meeting how hard it had been to unexpectedly be told the sex of her dead baby while sitting at her desk in the middle of an ordinary work day, her specialist “looked at me quite blankly and said, ‘We don’t like to coddle our women so we tend to just rip the Band-Aid off’.”
While she understands medical staff dealing with ART clients “probably see very emotional women a lot”, she believes there’s still room for compassion.
“I’m sure they celebrate when someone falls pregnant, but they need to be better at managing the reality of their business, which is that people don’t fall pregnant and people go away very, very empty-handed,” she says.
In a recent opinion piece, British IVF pioneer Professor Robert Winston blasted the IVF industry stating that: “… more and more infertile couples are being exploited by an increasingly grasping industry that frequently ignores ethical standards.”
Speaking to news.com.au from London, Professor Winston elaborated on this view, stating that IVF is frequently being offered to patients when cheaper fertility treatments may be more effective.
“In any other field of medicine, the cardinal rule is that you make a diagnosis before you offer treatment,” he says.
“Here, we’re offering treatment before we make a diagnosis.”
While Professor Winston concedes there are “some very good practitioners there both in Australia and in Britain who are doing an excellent job” he also says “there’s an industry going on which is extraordinarily worrying”.
“I would like to see a very honest approach to how we cost the treatment,” he added.
Professor Michael Chapman is a senior fertility specialist at IVF Australia and president of the Fertility Society of Australia (FSA). He has worked in the industry for 35 years and has been involved in the training of one fifth of Australia’s 150 IVF doctors.
Professor Chapman agrees that some of his colleagues bypass cheaper infertility treatments in favour of IVF, stating that some doctors “haven’t got the expertise to actually decide that the lesser treatments would be appropriate for patients, nor advise patients that there are other alternatives”.
Patients may also pressure their doctor for IVF, Professor Chapman says, because it can work more quickly than other fertility methods.
Addressing the issue of cost, Professor Chapman says modern IVF is expensive because it involves “high degrees of technology”.
“They’re expensive to develop and research and … obviously in return for that investment, the private sector is looking to benefit from that,” he says.
Even though reproductive technologies are rapidly improving, Professor Chapman urges infertile couples to have realistic expectations of what ART can achieve.
“The fact is that IVF cannot completely overcome nature,” he says.
“What I continue to say and have said, is that IVF is by no means a panacea,” he says, “It is just [for] a group of patients who cannot get pregnant any other way.”
According to the most recent report from the FSA and University of NSW, of the 71,516 initiated ART cycles that took place in Australia and New Zealand in 2013, 18.2 per cent (12,997) resulted in a live delivery.
On the surface of it, this means 82 per cent of cycles in these two countries failed. However Professor Chapman cautions that we must interpret these statistics with care.
“For numerous reasons, 25 per cent of cycles don’t even get to the stage of creation of an embryo but we can’t predict that before we start,” he says.
Professor Chapman claims that, per cycle, “the live birthrates in the better clinics are in the order of 30 to 35 per cent” for women aged 38 and below.
But while the top fertility centres openly flaunt these high statistics, Professor Chapman admits that other clinics have significantly lower success rates that range between 10 and 14 per cent. Those figures may be related to factors other than the quality of the clinic, he says.
After two and a half years of unsuccessfully trying to conceive, Aileen and Ryan gave up on ART, believing the financial and emotional cost was just too great.
“Every time we lost a baby, every time we failed another round, we socially withdrew,” Aileen says.
“I lost a lot of friendships through that time. Every friend who had a baby, every friend that went through IVF and got a baby, when I wasn’t getting one.
“I’ve got a graveyard of friendships behind me, really.”
For two years after they gave up ART, Aileen went through grief counselling.
“I was in so much pain,” she says.
Katrina, 44, and her husband Nigel, 48, were also unsuccessful after trying IVF for three years.
Right before they planned to start trying to conceive back in 2003, Nigel was in a horrific accident. As he rode along on his pushbike, someone in a parked car opened the door without looking and threw him under the wheels of a nine-tonne truck.
“His pelvis got completely crushed,” Katrina explains. “He was lucky to survive.”
Nigel had to learn to walk again. He spent five and a half months in hospital and another 12 months rehabilitating.
Once he was well enough, the couple turned their attention back to conceiving. They quickly realised there was an issue and couldn’t help wondering if it was related to the accident.
Like Aileen and Ryan, the couple turned to IVF.
“I remember the doctor saying if we did this on our own, there’d be a 1 to 2 per cent chance that we would fall pregnant naturally. With IVF that increased to 16 per cent,” Katrina says.
“It wasn’t until several stages down the track that I actually started thinking, hang on a minute. Sixteen per cent [chance] is actually 84 per cent failure.”
Professor Winston believes the way information is presented to patients is a deliberate sales tactic on the part of the IVF industry.
“It’s obvious, isn’t it? If you’re selling something, you’re going to put the best possible position of why people should buy it, aren’t you?,” he says.
However, Professor Chapman defends the IVF industry’s ethics.
“Unfortunately, even if I say you’ve got a 5 per cent chance, which means a 95 per cent chance of failure, the patient latches onto the 5 per cent. They’ll say, ‘At least I’ve got some chance. At the moment I’ve got none’,” he says.
“When you fail, you do have a negative view about everything that’s gone before. [But if] you talk to women that have been successful, they’ll tell you the opposite.
“It’s hard to see how we can do more in what is an incredibly traumatic time.”
Katrina and Nigel went through five IVF cycles. Then something awful happened.
“I had an egg collection procedure, which they do via ultrasound, and apparently during that procedure, it was a difficult for them to extract the follicles.”
At the time, Katrina was unaware that anything unusual had occurred.
“Normally you go home and you just have a bit of an easy day. No one had said, ‘It was a difficult procedure today, please keep in touch with us’ or, ‘Take care’. No one had said anything, so I just left thinking that it was normal.”
It was not normal. Katrina started to get bad chest pain.
“I felt like I couldn’t breathe, and I felt like my insides were going to fall out. I didn’t know what was happening to me,” she says.
According to Katrina, when she finally managed to contact her doctor he told her to take a Panadol.
“They actually burst a blood vessel with the needle, so I had an internal bleed, which actually became an internal haemorrhage,” Katrina says. “It doesn’t happen very often but it happened to me.”
Katrina lost so much blood that she had two transfusions in hospital. Meanwhile, she took a call from the IVF clinic and was told: “Your embryo’s going well, and we’ll see you Monday morning for transfer.”
Despite serious misgivings, Katrina agreed to the procedure. She was worried it might be the only chance she and Nigel had to have that longed-for baby.
“That was actually the only time we got an egg fertilised to embryo stage,” she says wistfully.
She had three weeks off work in which she “had to lie flat and let all that blood naturally dissipate” all the while “holding tight the whole time, and hoping, and praying, and meditating, but kind of knowing that it wasn’t going to be a very happy little home in there for a little embryo to find a little nest”.
“I think I cried every day, and then I got my period,” Katrina recollects. She’s stoic but the pain of remembering is written on her face.
“Nige didn’t want me to do any more, because he said, ‘Look, this is life-threatening, and I don’t want you to go through that any more’,” she continues.
Even so, Katrina felt she had “unfinished business” and went back for one more round.
As she was injecting herself with the necessary hormones “in that last cycle, I’d just get thinking, ‘This is the last time I want to be doing this. This is the last time I want to be in this waiting room full of women who are avoiding each other, and no eye contact’.”
That round failed too and Katrina and Nigel gave up for good. They sold the beautiful house south of Sydney with a pool and a big backyard where they’d imagined children would play and moved into an inner city apartment.
Katrina has grieved her childlessness “very slowly and painfully”.
“I think there’ll always be a part of my heart that’s sad about it. Going to my niece’s graduation, or going to school assemblies, they’re all reminders that that’s part of a community or a life that I’m not part of,” she says.
Aileen’s six-year-old niece, Juliet*, was born the year that she gave up IVF. Aileen had miscarried not long earlier and initially “didn’t want to know” about this brand new baby. But Juliet somehow managed to steal her heart.
“I started to fall I love with Juliet,” she says with a smile. “She saved me.”
For the first time in years, Aileen knitted a baby outfit — for Juliet.
“It is a symbol for me of how I crossed over from living in a state of despair and devastation into a place of hope and moving forward,” Aileen says.
These days, Juliet thinks of Aileen and Ryan as “second parents”, and spends large swathes of time with them.
For her part, Katrina has built a successful business and works hard to focus on the positives in her life.
“I think because of Nige’s accident, I felt so grateful just to have him.
“There’s been times where I’ve felt that there’s been something missing, and having to make a conscious choice to focus more on abundance in my life as opposed to absence,” she says.
Looking back, Aileen says that like many others, they went into the IVF process with a “certain amount of innocence”.
“They’re buying your hope and they know that your hope is strong,” she says.
*Names have been changed
Ginger Gorman is an award-winning print and radio journalist, and a 2006 World Press Institute Fellow. Follow her on twitter: @GingerGorman
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