Sunday 15 December 2019

The Ghost of Valentine's Day Future

Dr Helen O'Neill is an Irish geneticist who finds herself at the centre of a personal and professional dilemma: when is the right time to have a baby? She spoke to us about reproduction, abortion rights and why freezing her eggs is the ultimate insurance policy.

Woman of science: Helen O’Neill comes from a family of five doctors. But she herself didn't go into medicine, she chose genetics. Photo: David Conachy.
Woman of science: Helen O’Neill comes from a family of five doctors. But she herself didn't go into medicine, she chose genetics. Photo: David Conachy.
Donal Lynch

Donal Lynch

Generally speaking there is blessedly little emotion attached to Doctor Helen O'Neill's work as a geneticist. The IVF embryos which come into the lab where she works are anonymous and are each given a numerical marker. Each sample is tested and analysed for potential birth defects or chromosomal abnormalities. Helen never has to deal with the front line of fertility work and the desperate couples who present themselves at clinics. The tearful frustration and the breaking of difficult news is all handled by someone else. Helen deals purely in science.

And yet even in this most clinical of settings there is one number that always makes her blood run cold: 1984.

That was the year Helen herself was born. And, with increasingly frequency, it is the age of the women whose embryos she tests. "I'm 31", she tells me. "I'm right in the middle of this storm personally and professionally. I know so well the risks in waiting to have a child and yet I am stubborn. I've done all this work in college, on my career. I love my things. I don't get excited by the thought of a baby drooling down my front."

Helen's dilemma is emblematic for a whole generation of women, but she has more going for her than most: she has an enviable career as a top geneticist in England, she's in a relationship, and Scarlett Johansson-esque good looks to boot. So it feels slightly jarring to hear her say she's "living a nightmare" regarding the conundrum of dwindling fertility. Three years ago, when she was 28, she looked into the prospect of getting her eggs frozen, but the cost was prohibitive. "I also wasn't ready for a child. I am the baby of the family myself! We are all in a bubble of denial. Thirties are the new twenties, but evolution has a long way to catch up with our lifestyle."

The problem for Helen is that, with her vast scientific knowledge, the ostrich coping technique is not an option.

"The facts are that 7pc of males are infertile and about 10pc of females", Helen explains. "After twelve months of trying to conceive (the old fashioned way), according to the World Health Organisation (WHO) guidelines you are considered infertile; I would advise people to take heed sooner than that. After the age of 26 you start to have noticeable differences in the general live birth rate. There's this myth that it's healthy to have a child in your teens but there are complications below the age of 20 also. Between 26 and 30 a woman has the least chance of a genetic abnormality. That's the ideal window."

The problem, of course is that, for most women, these years also coincide with a period of playing the romantic field and putting in the heavy lifting of trying to establish themselves in their careers. They are, to borrow Sheryl Sandberg's phrase, leaning in. For many women, a child comes a distant third as a priority. Then, as they progress through their 30s, they try to have children and are confronted with the reality of diminished fertility. In desperation and at incredible financial, physical and emotional cost, they turn to IVF. This may sound alarmist, but it is far from an unusual path through life, Helen assures me: one in six Irish children is now born through IVF.

Helen says that there is widespread ignorance about this figure because of the taboo around fertility and people not wishing to saddle their children with the label of 'test-tube baby.' "The other big thing that tricks everyone is celebrities; the women who have airbrushed faces and may as well have airbrushed ovaries", she tells me. "They are the photoshop of fertility. They are all having twins and act like it's a surprise, but there's no surprise when it's twins because they've put in two embryos in the hope that one will take. They're not honest about what they've gone through, that they've had four or five cycles and spent upwards of €25,000. The average spend in Ireland is €4,800 per cycle and most people need 2-3 cycles. This high cost means that it is a class issue as well. Poorer women will not be able to afford to wait."

It was controversial, a few years ago, when Facebook and Apple offered to pay for their female employees having their eggs frozen. Some, like Time magazine, called this move "the great equalizer", while others equated it with a type of corporate cynicism; enable women to work hard for as long as possible, without pesky maternity leave holding them back too early. "You had some people saying that it was tantamount to those companies saying, 'We'll get the most out of you now and then you can have babies when your work here is done.' But there are a lot of women, myself included, who would have loved to have been offered something like that when we were 25", Helen says. "The problem is that women only hear about freezing eggs when they're 35, single, and they've kind of got this notion that they should freeze their eggs, but it should really have been done long before then. The important age is not the age of the bearer of the child; it's the age that the eggs are frozen at. This message need to be got out there: I feel like, in some ways, I'm the ghost of Valentine's Day future."

The younger a woman freezes her eggs the more likely they are to be viable, but because vitrification (freezing the eggs) is a relatively new technique, evidence is in short supply as to how effective it really is. IVF clinics give varying success rates but since a large number of women have not retrieved their eggs, it will take some years for a more complete picture to emerge. Only around 12% of thawed eggs lead to a live birth. The egg-to-baby rate, i.e. the chance that one frozen egg from one fertile young woman will develop into a baby - is approximately 6.5%. But even this figure is based on donor eggs, which are necessarily much healthier than eggs from the general population.

Helen says that the size of the desired family needs to be taken into account as well. "If you want to have six children, you'd better start at 21, five children you'd better start at 22. It's literally like going along year-by-year. I'm at the point now where I think I'd be lucky to have one. I'm almost thinking it would be great to have twins, at least you'd get two for the price of one. The law has been changed; it used to be that you could implant as many embryos as you wanted but this led to scenarios where women had multiple births like octuplets. Multiple births are dangerous for both mothers and foetuses. Now only the most viable embryo is put back in."

Helen herself comes from a large family of six and she grew up in Cork. Her own career was prompted by her admiration of her father, Hugh, a now-retired consultant anaesthetist. "He was one of five doctors in the family", she explains. He is my hero. I didn't go into medicine, I chose genetics. I'm also an identical twin and even though we're genetically identical, we are very different. My twin sister is a corporate lawyer. I think, more than anything, that fuelled my interest in genetics."

Helen did her BSc in Molecular Genetics at University College Cork. She went on to do her MSc in Prenatal Genetics and Fetal Medicine at University College London with Professor Joyce Harper. She did her PhD at University College London in stem cell biology and developmental genetics in the laboratory of Professor Robin Lovell-Badge at the National Institute for Medical Research (now the Francis Crick Institute which last week was awarded the first global licence to do genetic editing on human embryos). There she researched the genes involved in sex determination. In her PhD, Helen worked on key genes involved in the formation of the ovary and discovered a key area within a female-specific gene, which, when mutated, causes premature ovarian failure and can cause ovarian cancer. Helen says the sex determination aspect of her Phd was also eye-opening: "Amazingly, one in 500 people will have some disorder of sexual development i.e. something wrong with their testes or ovaries. Chromosomal abnormalities are quite prevalent also. You could think you're a woman your whole life and then you go to have a child and something different emerges. In these circumstances, people may not know the gender when their baby is born because of ambiguous genitalia. For them it's so much easier to say it's a girl. People have no problem with many shades of grey but not when it comes to many shades of gender."

More recently, Helen has also been involved in the setting up of a new website called Global Women Connected. "It was formed by my boss (Prof. Harper) because there are a lot of women going through really fundamental things - basic women's health issues, such as declining fertility or menopause - and they really don't understand them. There is a lot of embarrassment around these issues. So through the website we're trying to fill some gaps in knowledge. Every day we populate it with new articles."

One of the health issues that is most specific to Ireland is the vexed question of abortion rights and Helen has strong views on the subject. She calls the lack of choice, "one of the biggest problems we have in Ireland" and deplores the current legal situation, which means that women must carry a foetus to term, even if it is known the foetus has little or no chance of life outside the womb. She also insists, however, that there is a middle ground between England and Ireland. "In England, you can have an abortion at 24 weeks. You have missed five periods at that point. You have a significant bump. You really ought to know at that point.

"I think that an abortion should be allowed up to a maximum 18 weeks, however, society should allow for open discussion so that women aren't left hiding something until it's too late."

Her opinions have been forged, not just by her professional expertise, but also by her life experience: "I've known people who've had abortions. They've all had to go to England. It was traumatic for all of them. We all hate the stress of travel. But imagine that combined with huge emotional distress, the money involved, the secrecy, the time off work. I know someone who had one done and she was kind of expecting to be given a minute afterward or for someone to offer her a cup of tea but she was just told "you're done" and she had to leave [the clinic]. There was no 'are you ok?' I also remember queueing for a flight home to Cork and the girl in front of me just started haemorrhaging blood. She called for a chair. I felt so much empathy for the desperation of her situation. She looked about 17 in her tracksuit. And she'd had an abortion that day and all she kept crying was 'don't tell anyone, don't tell anyone'. You wouldn't put a dog through that. But there are Irish women doing it all the time."

Helen says that there is "no solution" to the dilemma of how and when to have babies, only an "acknowledgement of choices", a realisation of how irrelevant all of the moving parts of a life are when measured against the relentless march of human biology and the slow deterioration of the reproductive system. "I see people freaking out because they haven't found someone to marry, but you can get married any time in your life", Helen says. "But you can't have a baby any time. By the time most women come up for air their time has run out. Going through IVF is not good for you. When you compare a woman going crazy once a month on her period, imagine stimulating her through IVF where she is pumped full of hormones. We need to think about all of these things." And her own solution? "Actually, funny you ask, I've just decided today: I'm freezing my eggs tomorrow", she smiles. "And I think other women who are my age, who hope to have children, should seriously consider doing the same. It's an insurance policy, and that's how we have to think about it."

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