Embryos in storage: why is it so hard to donate them?

Desperate to conceive, Clara Pirani never considered what she’d do with her leftover embryos — or how tough the choice would be.

Picture: Getty Images

Every six months I receive an email asking what I’d like to do with my unborn children. I stare at the dreaded subject line, ­fighting the urge to hit the delete button and delay this unenviable decision yet again. Most of the time I manage to forget this dilemma exists. Busy with day-to-day life, I ignore the enormity of this impossible choice and its lifelong consequences. And then the damn email. It’s always the same. Politely, with great sensitivity, it reminds me that we have four embryos, frozen, in storage. My ­husband and I have three options: let them ­“succumb”, donate them to research or donate them to someone else. I’m usually a decisive ­person, sometimes impulsive. But the responsi­bility of this choice has me stuck on pause.

If our embryos are implanted into another woman’s womb and develop into babies, they will be our biological children. But I won’t be there to protect them, to kiss their soft skin, hold their little hands, comfort them and watch them transform all too quickly into teenagers. I will never feel their warm cheeks against my skin as they fall asleep on my chest. They won’t race out of the school gate, hurling themselves into my arms, almost knocking me over before presenting me with a glorious work of art to stick on our kitchen wall. There will be no homemade “I love Mummy” cards and breakfast in bed on Mother’s Day, no reading them books for hours, no athletics carnivals, no dance recitals. In fact, I may never meet them.

It might sound incredibly naive, but I didn’t see this coming. Like thousands of other fertility-challenged people entering into the tumultuous world of IVF, my focus was entirely on the struggle to fall pregnant through the far less enjoyable method of daily injections, blood tests and various regular invasive procedures. We were so desperate to have children it never occurred to us that we might end up with more embryos than we could use.

Almost eight years ago we sat in the fertility specialist’s office, trying to remain stoic as she showed us a graph that harshly illustrated the reality of our situation. Due to several issues, including our ages, we had about a six per cent chance of falling pregnant and carrying a baby to full term. We were incredibly lucky. After surgery to remove a benign but very large growth from my uterus, followed by three IVF cycles, two miscarriages and a fraught pregnancy, our healthy baby girl entered the world. During the next year I would often sneak into her room at night and sit in silent awe, watching her sleep, still utterly stunned and tearfully grateful that we had defied the odds and this astonishing creature was ours. We felt so blessed by our good fortune that we chose not to try for another child, deciding it was too risky.

My husband was ready to donate our embryos years ago but for almost six years I vacillated. In the end it was a process of elimination and good old-fashioned guilt that formed my decision.

As a former health editor I’d spent years covering the phenomenal benefits of medical research but when it came time to decide, I just couldn’t donate our embryos to science. While I’m not at all religious, I also couldn’t allow them to succumb, the potential for life evaporating as they defrosted to nothingness. What I kept coming back to was this fact: we had a rare, life-changing gift to give.

One in six Australian couples experiences infertility and most will never become parents. Researchers from the National Perinatal Epide­miology and Statistics Unit at the University of NSW in July released perhaps the most detailed findings into IVF success rates. The study followed more than 56,000 women who completed eight cycles of IVF in Australia and New Zealand from 2009 until 2014, or until the birth of their first child as a result of fertility treatment. Thirty per cent of women aged 35 to 39 years had a baby after one cycle. For women aged 40-44, success rates for live births increased from 10 per cent after one cycle to roughly 40 per cent by the ­seventh cycle. Only 1.4 per cent of women older than 45 successfully give birth after one cycle, increasing to 3.9 per cent after five cycles. However, 30 per cent of all women stop treatment after the first cycle due to the physical and emotional stress of IVF and the out-of-pocket costs, which can range from $2000 to $4000 per cycle.

I vividly remember the shock I felt when I first entered the large, crowded waiting room at the IVF clinic. I couldn’t believe the number of young, healthy-looking women there. I’m left with a strange version of survivor guilt, puzzled as to why my husband and I were lucky when the IVF journey for so many others results in heartbreak. And as the parent of an only child, I will always carry the guilt that our daughter will never have a sibling. How could I deny my daughter the chance of having a biological brother or sister, who she might one day meet? How could I deny someone else the opportunity to experience the unparalleled joy of becoming a parent?

After years of procrastination, I finally tell my husbandI’m ready to donate our embryos. But this decision leaves us with an impossible question to answer. Who do we choose to parent these ­children? All our friends have either completed their families or they don’t want to be parents.

So, as is the case with almost all important life decisions these days, I start with Google. I soon ­realise there are few options for anyone wanting to donate their embryos and that it is not encouraged. While most assisted reproductive technology (ART) clinics will store embryos (which will have been frozen up to five days after fertilisation) for a fee, very few offer to help match donors with recipients. One fertility specialist tells me most clinics find the process too problematic and too expensive to provide. And as the embryos have already been created, women receiving a donated embryo may only require minimal ­hormone treatment so there’s a limited financial return for the clinic.

Among the dozens of fertility clinics in Sydney, I find only two that offer a matching service. One will only accept donated embryos that were ­created by a woman under the age of 35 years and the other will take embryos from women up to age 40. We decide to find a recipient on our own.

Our search leads us to the Embryo Donation Network, the only public forum in Australia ­created specifically for potential embryo donors and recipients. It was established by Sydney woman Marieke McPhail in 2012 after she spent years being turned away by IVF clinics that did not ­facilitate embryo donations. One specialist told her the process was “unethical”. McPhail set up the network to ease the path for others after she and her husband had a daughter from a donated embryo. The network’s website hosts a free ­classifieds section where donors and potential recipients can contact one another.

We post our ad, outlining our circumstances and a bit about us both, and we invite any couples who are open to having some form of ongoing contact if a baby results from the donation — even if it’s just an annual email — to contact us. Within days we’re inundated with emails from people with poignant stories of infertility: older couples, some in their 50s; cancer survivors; lots of single women; people who have endured years of IVF and countless miscarriages; parents whose children have tragically died. Their grief is ­palpable. It’s impossible to remain unmoved by their heart-rending pleas to receive our embryos. I feel like I’m playing God and it’s not a role I relish. And yet, we find ourselves being monstrously picky. While we believe that it’s better to have one wonderful ­parent than two absent parents, we decide against donating to ­single women. What would happen to the child if the single ­parent became unemployed or sick, or worse?

We also decide against couples who don’t live in NSW. Embryo donation is legal in all states and ­territories as long as donors are not paid, but there is no federal legislation covering assisted reproduction technology. In 2010, the NSW Ministry of Health established a central register requiring ART clinics to provide identifying information about donors and donor-conceived children. Most states and territories have some form of register but most are voluntary and several contain only non-identifying information about children born from donated embryos. A donor-conceived child is legally the child of the birth mother from the moment the embryo is implanted. Even if the recipients initially agree to keep us updated on the child’s progress, they can cut off contact at any time. We have no legal authority. NSW’s mandatory register provides a safety net — a reassurance that we will be notified if a baby is born from our donated embryos, and once the child turns 18, we can contact them if they consent. He or she can access our names, address, medical history and our child’s gender and year of birth, and information about our ethnicity and physical characteristics.

With the anguish we felt after every miscarriage clear in our memories, we decide to donate to someone in their late 30s or early 40s — those in most desperate need who have tried for years to have children and who are rapidly running out of time to adopt, a process that can easily take five years. We also decide against donating to anyone who, like us, has been fortunate enough to already have a child, preferring to help someone who, without a donated embryo, will never become a parent.

Narrowing our choice to childless couples over the age of 35 in NSW leaves us with only a handful of potential recipients. I read their emails with a ­sickening sense of unease. How do we choose? How do we predict whether they’ll be loving, decent parents? There’s nothing scientific about this choice. I feel cruel, brutally crushing the hopes of these lovely people because they don’t meet our neatly drawn list of criteria. Some are dismissed, essentially, because they don’t sound anything like us. This instinct is entirely illogical yet over­whelmingly primal. If we can’t raise our children, we want them to be raised by someone like us, with similar values, beliefs and experiences.

Despite the growing number of Australians experiencing infertility, finding someone to accept our embryos is far more difficult than we had anticipated. While egg and sperm donation is widely accepted, embryo donation is rarely discussed. It’s been 23 years since the first baby was born in ­Australia from embryo donation yet an excess of embryos remains the often unspoken consequence of IVF. In 2014, only 68 babies were born from embryo donation from 387 donor/recipient IVF cycles, despite some estimates that there are about 100,000 embryos stored in ­clinics across Australia. There are no national ­figures, but in 2016 there were 46,000 frozen embryos stored in Victoria alone. Many will be used by the people who created them but a ­substantial ­number will be discarded.

There are 100,000 human embryos stored in IVF clinics in Australia. Pic: Getty Images

For three months I wade through the emails and constantly check the Embryo Donation ­Network’s website. Finally I see an ad posted by a couple from NSW’s Central Coast. They seem warm, funny and intelligent. I excitedly call my husband and he agrees that we should contact them. I begin to draft an email but suddenly I don’t know what to say. There are simply no words to adequately describe the emotions involved with asking a stranger to raise your biological child. How do I extract the reassurance I need that they will be good parents? I cobble together a chirpy little email, sounding far more upbeat than I feel. With heart pounding, I hit send. And wait.

Six hours later, I’m on the bus when I see the reply. She sounds stunned and excited. She says that if it were only up to her she’d meet us as soon as possible, but her husband is still coming to terms with the whole concept of embryo donation. I’m a little taken aback — I had assumed that anyone posting an ad to find a donor would already be comfortable with the idea. But perhaps the decision to raise someone else’s biological child is harder to accept when there’s a chance that it might actually happen. I tell her that it’s OK, I understand. She has an appointment with a fertility specialist in two weeks to make sure that physically she’s OK to proceed and she asks would we mind waiting until then. I tell her that’s fine. So we wait.

Two weeks later, a reply. She’s sorry but she has some ongoing medical issues and it’s probably best that they don’t accept our embryos. I don’t press her to explain. I feel sorry for them and disappointed for us. We’re back to square one.

Another two months pass and then I see an ad posted by a Sydney couple who have been trying for years to have a child. After two miscarriages they tried to fall pregnant using donor eggs but due to the shortage of eggs in Australia they went for treatment at a clinic in South Africa. Using donor eggs and the husband’s sperm, they created several embryos but sadly they didn’t become pregnant. Despite the heartbreak they’re determined to keep trying. They’re in their early 40s so this is their only option. The woman has used their full names so I quickly scan social media to get a better sense of who they are. Again, they seem like lovely people who have retained a sense of humour and optimism throughout their many attempts to become parents. I draft another “we think you might like our embryos” email and hit send.

Less than two hours later, she replies. They’re thrilled and very keen, yet she admits they still have one embryo in storage in South Africa and they’re heading back in four weeks to try again so they’ll know in six weeks if it’s worked. If it doesn’t, they’d like to meet with us and would we mind waiting? Again, I’m frustrated by the delay but I tell her no, of course we don’t mind. I understand this is their last chance to have a child who will at least be the biological offspring of one of them.

Seven weeks later I send her an email and ­gently ask how it went. It’s fantastic news. They’re pregnant. We’re very happy for them, but we’re back at square one, again. I decide to try something new and place an ad in a local publication called ­Sydney’s Child, which has an egg/embryo classifieds section. This is beginning to feel surreal. What’s next? Gumtree, eBay? We only get responses from two single women who live interstate.

We decide to use an IVF clinic to find a ­recipient. Our embryos are stored at Genea ­(formerly called Sydney IVF), where we underwent IVF. However, it does not offer an embryo donation service. If we find a recipient we’ll have to transfer our embryos from Genea to another clinic that will perform the procedure.

IVF Australia has clinics throughout Sydney and the ACT. It performs donor embryo transfers and maintains a list of potential donors and recipients that we’re allowed to access once we’ve gone through their screening process. Donors must be over 21 years old. Their embryos must have been stored for less than 10 years and they must not have been formed by donated eggs or sperm. Donors undergo blood tests to screen against ­serious infection or genetic conditions. They must undergo two counselling sessions and have no ­history of mental illness. The recipients go through a similar process and if a donor and recipient agree to proceed, there’s a one-month cooling off period.

Like all forms of IVF, success rates vary enormously depending on age. We know there’s a ­reasonable chance one of our embryos will result in a child. At IVF Australia, 65 per cent of women who receive a donated embryo will experience a live birth if the embryo was donated by a couple who had a child or children from that IVF cycle.

I track down our medical records from Genea and send them to IVF Australia. In the meantime we attend our first counselling session. How will we feel if the child looks like one of us, or like our daughter? How will we feel if the recipients change their mind and cut off contact? We’ve discussed these scenarios many times and we tell the counsellor we feel as ready to proceed as we possibly can be. After an appointment with a doctor, another counselling ­session and a series of blood tests, we fill out forms providing information about ourselves and a ­message to our prospective children — one of the hardest things I’ve ever had to write.

We’re finally able to access IVF Australia’s list of potential recipients. It’s mostly single women or couples with one child, but we see a couple that could be a match. They didn’t meet until their late 30s and now in their early 40s they’ve had several miscarriages. They live in Sydney and sound very much in love, articulate, friendly and desperate to become ­parents. I send her an email. Three days later, we receive a reply. She says they are interested and they’ll get back to us.

Almost four weeks pass and we still haven’t heard back. This time, understanding eludes me. I’m angry. If they don’t feel we’re a suitable match, that’s completely reasonable. But to not even respond is staggering. I feel powerless and defeated.

A week later, we’re surprised to get a response. They’re incredibly touched by our offer but ­unfortunately their information on the database is out of date and now they feel they’re too old to accept our embryos. We’re amazed and saddened to learn that they’ve been on the recipient database for two and half years, desperately waiting for an offer that, in the end, came too late.

We decide to go back to the Embryo Donation Network. Marieke McPhail is very supportive and suggests we repost our ad. This time we ask for NSW-based couples who don’t already have a child. We get no response.

So here we are. Our four little embryos remain frozen, as are our hopes of giving someone a child, and time is fast running out. We have less than three years to find a recipient before the clinic’s 10-year limit on the storage of frozen donor embryos expires. There are moments when the absurdity of our situation hits home and I wonder how we stumbled into this insufferable limbo. Even if we find a recipient, all this hand-wringing may amount to nothing. The embryos may not survive — a devastating ­outcome for the recipients and also for us. And then there’s my daughter, her cheeky, smiling face reduced to tears when she recently asked, “Mummy, why don’t I have a brother or a sister?” I know with ferocious certainty that there is nothing I would not do to grant her this wish. But if a child is born from one of our embryos, how will we explain this to her? How do we tell her that she has a little brother or sister but no, she can’t see them until they’re much older?

After endless hours spent weighing up these impossible choices, I am left with no clear answer and no comfort. I don’t know if we’ll find a recipient, I don’t know if they will have a baby, I don’t know how I’ll truly react if the process ­succeeds or fails, I don’t know whether this will be good for my daughter or deeply distressing. I have no terms of reference to predict how I will feel if I see another woman holding the baby. I imagine that I will feel — in equal measure — heartbroken and ecstatically happy. It’s a blind leap of faith.

I try to remain optimistic and use this inter­minable waiting to prepare for something that may never eventuate. Every day I remind myself to stop thinking of these embryos as “my” ­children or “our” children. I try to stop thinking of these strangers as “recipients” and instead begin calling them “parents”. I picture the miraculous moment when they are handed their newborn for the first time. I imagine their tears of joy and ­disbelief that they finally have a child. And it makes me smile. Even if I never know this child, I will always know that I have given him or her life. I will always know that, for us, this was the right thing to do. And perhaps that’s enough.