Finding a path through infertility

Cliff and Anne had been going out for only two months when he discovered through medical investigations at the age of 30 that he was probably infertile.

“That was a difficult time,” he says. He felt he had to let his girlfriend know right away but their relationship continued and they were married in 2006.

After learning he was definitely infertile, as a result of being born with undescended testes which was not picked up in childhood, they knew they would have to use donor sperm to have children.

“We tried with two IUI [intrauterine insemination] procedures first and then we were told the only option was IVF [in vitro fertilisation].” After several cycles of IVF in the Sims clinic in Dublin, they were advised in February 2012 to go for “double donor” conception – using donated eggs as well as sperm.

The fact that any resulting child would not have a genetic link to either of them did not put them off, although he acknowledges this choice is not for everybody.

“All we wanted was to have a baby and we had been through so much and so many failed attempts, it just seemed the natural way to go. You would go to any lengths.”

The series of failed IVF attempts had eaten into their time, with each one taking three to six months to get over before gearing up for another.

It is hard to convey, he says, how “gruelling” the whole thing is. It is very tough to go into work each day as if nothing is happening, while dealing with the injections, medication and doctor’s appointments, and keeping it all secret.

The couple went to Spain towards the end of last year for double-donor treatment, from which they got five good embryos. Two were transferred but Anne had a miscarriage after six weeks.

“We had three embryos left and we went back in July of this year to have another two embryos transferred – one didn’t survive the thawing. The good news is that it has actually worked,” says Cliff, who sounds as if he still doesn’t quite dare believe it.

But as Anne (40) is just 10 weeks pregnant with twins as we speak, it is still a very anxious time. He had none of the elation he had anticipated after the positive pregnancy test.

“You think your life is going to be completely different and you’ll be jumping around. But it hasn’t got any easier,” he explains. “It still feels like we’re in the two-week wait [the period between embryo transfer and the pregnancy test].” He hopes that after 12 weeks, they will be able to relax a bit more.

It has cost them roughly €45,000 to get to this point. “They say it is like a rollercoaster you can’t get off – it is very difficult to know when to stop.”

Although they couldn’t really afford the second visit to Spain, “there was no way we couldn’t go when we still had embryos left”.

Growing phenomenon
"Fertility tourism" is a growing phenomenon, with Irish couples travelling to clinics in various countries such as Spain, the Czech Republic and the Ukraine.

"There are loads of people going abroad," agrees the director of Sims clinic in Dublin, Dr David Walsh.

“It used to be primarily for donor eggs, now it’s for economic reasons. When they can get treatment for half the cost outside the euro zone – in the Czech Republic in particular – why wouldn’t they?

“At least they have the choice and it puts the onus on providers in the high-cost euro zone, including Ireland, to see how we can bring costs down,” he says.

Couples can expect to pay up to €5,000 for one IVF cycle here, while the same amount of money could cover two cycles abroad.

The only problem about going abroad is the continuity of care, he points out. “Personally I think doctors, and indeed politicians, have a duty of care to citizens to provide as much as we can provide within these boundaries, within reason, that should be our orientation and intent.”

There is still no legal framework to deal with issues arising from infertility treatments. The National Infertility Support and Information Group (NISIG), which will host a conference in Limerick on September 14th, has long been calling for action on the report of the Commission on Assisted Human Reproduction that was published in 2005.

It has been gathering dust, while reproductive medicine has forged ahead.

"It was a very good and detailed report," says NISIG's clinical ambassador, senior clinical embryologist Mr Declan Keane. "It just needs to be updated and put into practice."

However, the lack of legislation does not mean reproductive medicine is not regulated here. Clinics must have licences from the Irish Medicines Board (IMB) for each of the services they offer.

But in the absence of a specialised regulatory body, like the Human Fertilisation Embryology Authority (HFEA) in the UK, there is no source of independent information for people seeking infertility treatment in this State.

The HFEA website carries a guide to all the UK fertility clinics, listing the procedures carried out and the success rates, which is something NISIG co-founder, Helen Browne, would like to see here.

Greater transparency
While both Keane and Walsh agree there is a need for greater transparency, they point out there are downsides of collated statistics.

For a start, the figures are inevitably going to be about two years out of date – a significant time lapse in such a rapidly developing area of medicine – and clinics would also be inclined to “cherry pick” patients to keep their success rates up.

NISIG, a voluntary group, does its best to support, inform and empower people. Keane and Browne sat on the World Assisted Conception Task Force, which was devising a patient charter that all fertility clinics would be asked to adhere to.

Unfortunately, that initiative ran out of steam but NISIG would like to see a “patient pathway” here to guide people through the maze of services on offer.

The internet is a much-used resource in researching clinics, both here and abroad, but people travelling independently for procedures outside the State are “getting into a quagmire”, says Keane.

“You don’t know what you’re getting into and who is going to take responsibility for medical duty of care if you have problems as a result?” It’s not fair to go into the public medical system here with those problems because they don’t know what’s going on, he points out.

As director of ReproMed, that has clinics in Dublin and Kilkenny and which works with “sister clinics” abroad, Keane says: “I would nearly describe myself as a travel agent for IVF treatment abroad.” He tracks developments and performances in clinics both here and abroad and lays out the choices for patients who attend ReproMed for consultations and diagnostic tests.

"The main one we are using is in the Czech Republic," he says. "The legislation is good, even a bit tighter than the IMB; the services are excellent; the technology is very advanced and the cost is cheaper than in Ireland."

No financial assistance
Unlike the UK, where people are entitled to one free round of IVF – and in Belgium they can have up to six rounds – the State does not provide any financial assistance for infertility treatments; nor is it covered by health insurers.

But the capping of medication costs at €144 a month under the Drugs Payment Scheme is a significant saving and expenses can be off-set against tax.

Cliff says it was lonely for him and Anne having to make the trips to Spain and they told very few people what they were doing.

“It was emotional going out and if it could have been done in Ireland, it would have been better – but the clinic we went to was absolutely amazing.”

He has found it very hard seeing all Anne has had to go through and knowing it was due to his infertility. “It is so, so stressful on a relationship.”

As patient-support manager at the Hari clinic in the Rotunda Hospital, Dublin, Joan Hamilton sees how stressed couples can be; they have lost control of an important aspect of their life.

“What should have happened in the comfort of your own home is now happening in a clinic,” she says.

Hari does not do donor conception but she sees people who have been unsuccessful in treatment and who are considering moving on to that option.

It is an “enormous jump, which really needs to be discussed”, she says. “It is a huge change from thinking ‘genetically this is mine’ to ‘am I able to cope with this?’

“Science, technology and medicine are moving on so quickly,” she adds, “the human part of these treatments can be overlooked. I feel in Hari we look after the human part of it – and value that.”

While NISIG is a great source of support, says Cliff, making friends through it can be a double-edged sword because it is very painful if they become pregnant and you don’t.

He and Anne are lucky, he adds, that they both still have the Catholic faith they grew up with, which has helped them through difficult times. Yet they are perfectly aware that their church doesn’t approve of what they have done. “We had to go with our own gut feeling on it,” he adds. “It was our only option in this life to have a child.”

Names have been changed.

The National Infertility Support and Information Group hosts a conference in Thomond Park, Limerick, on Saturday, September 14th. See nisig.ie for more information.

swayman@irishtimes.com

When Siobhán Boucher and her husband, Bill, had their first child, Rachael, seven years ago, fertility issues didn't cross their mind.

It was only when they decided more than two years later that it would be good if their daughter had a brother or sister, that the problems started.

Siobhán became pregnant but it was ectopic – the embryo implanted outside the uterus – and she had to have her right fallopian tube removed.

“After that I was concerned that I wouldn’t get pregnant as easily. But I conceived again and had another miscarriage at eight weeks.”

When the couple went for medical investigations, it transpired there were fertility issues on both sides and they were shocked when advised that their best chance of having another child was through egg donation.

With one child already, it was a situation they had never envisaged.

Secondary infertility – the inability to have a second child – is talked about even less than general infertility, Siobhán believes. While there is more awareness now of the need for sensitivity when talking to childless couples, once you have one, you are "fair game" for inquiries about when you're going to produce another.

It is not as if as you can even try to avoid the company of mothers and babies, as other women desperate to conceive sometimes do, because you are in the thick of it with your own child, she points out. And fellow infertility sufferers who are longing for their first baby are not going to be overly sympathetic either.

“I think you will find people who have no children are not particularly supportive even though all the same stuff applies in terms of grief and miscarriages and your want for another child.”

A tough year followed, recalls Siobhán, as she had to go back and deal with the grief of the miscarriages before thinking about what way to move forward.

She found great support through organisations such as NISIG and the Miscarriage Association of Ireland as she tried to come to terms with the dilemma facing them.

“We decided we would give IVF a go but with my own eggs and not a donor cycle,” she explains, although it wasn’t really recommended as the clinic reckoned the chances were slim. But the couple needed to do it for themselves – “to know that we had done everything in our power”. It wasn’t a success.

"We had already decided we would do only one cycle because it is the kind of thing you can get sucked into, cycle after cycle," says Siobhán, who is a fertility coach (siobhanboucher.com) and runs a support group near her home in Castleknock, Dublin

“I am very sympathetic to people who go through IVF and have unsuccessful treatment because, in my eyes, that is actually like a miscarriage – it is just a matter of timing. They get even less support again. It is very, very tough.”

Siobhán (39) and her husband "took stock" and now "we're in a good place – we decided not to go ahead with a donor", she explains.

They felt, after having their own child, that conceiving a second with somebody else’s genetic material “didn’t fit. It didn’t work for us.” She thinks they would have considered it more if they hadn’t already had Rachael.

"We are happy with our lot and we are not chasing this dream any more. I think our chances [of conceiving] are as good naturally as they are through IVF – probably equally as remote – and there is no point in putting ourselves through that."

It is a relief to no longer be cycle counting and worrying about doctor’s appointments.

Although, she adds: “We haven’t actually given up hope that there won’t be a little surprise.”