Sunday, 16 December 2012

Egg donors, recipients and a fertility doctor share their stories

The Guardian speaks to egg donors, recipients and a fertility doctor to find out what it is really like to experience the gift of egg donation. In the last few years, the backdrop to egg donation has changed a lot. Since 2005, sperm and egg donors remain anonymous to the intended parents, but the child can now find out non-identifying information about its donor at 16, and more detailed information, including name and address, when it reaches 18. Although the numbers of egg donors didn't collapse after this, as feared, fewer new donors registered and there has been a shortage as demand has increased – around 1,300 women every year in the UK are treated with donated eggs – with waiting lists of around a year at some clinics, which has resulted in many women and couples seeking treatment abroad. Earlier this year, the Human Fertilisation and Embryology Authority (HFEA) introduced a £750 compensation fee to women who donate their eggs – a recognition of the invasive and time-consuming process – which has resulted in shorter waiting times at many clinics. The recipient Sarah, 45 Gave birth to daughter Emma, who was conceived using eggs from an altruistic donor, in August 2010. Lives with husband Robert near London. A miscarriage at 38, though devastating, gave them hope, says Sarah, sitting across the dining table in her home with Robert, while their daughter, surrounded by toys, plays nearby. But after two years nothing had happened. "Every month you have to pick yourself up and say, 'it will be next month'," she says. Sarah went through two cycles of IVF, both unsuccessful, so her consultant raised the possibility of using eggs donated by another woman. "I talked to women online who had children using donor eggs and that gave me some confidence," she says, "but I still had blips. I would think, 'what happens if it feels completely wrong?'" They signed up for the waiting list at their clinic and four months later were matched with an egg donor. "We were given her eye and hair colour, height and blood group," says Sarah, "and given a couple of days to think about it. All I could think about was the fact that her hair was a bit lighter than mine. But when you only have a few things to go on, they become momentous." She phoned her mother, who tried to reassure her. "I put the phone down and I suddenly thought – [the donor] is someone who doesn't know me, might never know me, and yet she is prepared to go through all this to help a complete stranger. If I wanted a child to inherit a characteristic, would it be my hair colour, or would it be being that selfless and wonderful a person?" Sarah and her husband were given five eggs, and four embryos were created; two were implanted. They didn't work. She describes it as "a huge crash". Then the other two embryos were implanted. An early scan a few weeks later showed two heartbeats, but shortly afterwards one of the twins died. They didn't buy anything for the baby until Sarah was in her 25th week of pregnancy. And then came Emma. "I think of my donor every day," she says. "On Saturday, Emma was holding hands with her cousin at his fifth birthday party and delighting my parents with her newly-learned words. Our donor didn't just bring joy into our lives, but into the lives of everyone who means the most to us." I ask Robert if he was ever worried they would have different feelings about the child – the child would be genetically related to him, but not his wife. "I actually never thought of the baby as being anything other than ours," he says. "But I can understand that Sarah feels more of an affinity with our donor. I knew that our donor's egg was smaller than a pinprick and it would be Sarah who would help those cells grow into a baby." They will start to introduce Emma to the idea of how she was conceived in the next year or two (they show me a picture book they got from the Donor Conception Network, an organisation that supports families whose children were conceived using donor eggs or sperm). They believe Emma has several half-siblings (the donor had children of her own, and her eggs were shared with at least one other family). Are they prepared for how their lives might expand if Emma decides she would like to meet the woman who donated her eggs? Sarah nods. "It will be up to her – she might not be interested. But I would love to meet the woman one day and say thank you." The donor Shelley Lawson, 36 Full-time mother of two, lives in southern England with her husband. She donated 11 eggs in 2008. What makes a woman willingly undergo an invasive procedure, all for a complete stranger? Shelley Lawson seems to find the question strange. "It was no more profound than 'I can help'," she says. "I knew I was young enough to be able to donate eggs – I was 33 and you had to be under 35. Because we didn't have any problem conceiving, I thought it would be likely to be successful." According to HFEA records, Lawson was one of 554 non-patient egg donors that year (another 681 women who were already undergoing fertility treatment shared their eggs with other women who needed them in return for free or cheaper treatment). The most recent figures, for 2010, show numbers are similar, with 592 altruistic donors. The local hospital where she registered gave Lawson and her husband a lot of counselling. "They were obviously anxious we had thought through every possible ethical ramification about the issues of anonymity being lifted. They didn't put any pressure on us." After signing up, she was sent a daunting pack of needles and hormones and injected herself with the drugs every day for three weeks. Lawson was warned about possible side effects such as headaches, mood swings and nausea, but says she only experienced some bloating. Even after a short general anaesthetic, during which 11 of her eggs were retrieved, she only experienced a few abdominal cramps. "The hospital kept me informed. I remember the phone call that said: 'Good news, one of them is pregnant.' It was a huge relief. I did feel a responsibility. They will have tried everything else, done several rounds of IVF at great expense, waited for ages for these eggs. I felt desperate for it to work." Lawson knows that one child has been born using her eggs, but isn't aware of any others. Does she feel as if she has a son or daughter out there somewhere? She shakes her head. "I wouldn't use those words. If we were ever to meet them, I think we would feel they are part of the family, but I don't feel maternal towards them. That would probably be the biggest thing for anyone contemplating this to reconcile themselves with. But the benefits so outweigh any small anxieties. You would hope they have come from a very loving home because of the efforts their parents went through to have them." Lawson says she thinks about the child she knows was born every few months: "We were encouraged to write a letter to any future children, just outlining why we did it and a little bit about our family. We explained that we love being parents and we wanted to give another family the chance to be parents too. We explained about our children. We said we would love to hear from you if you would like it." She wrote a similar letter to her own children, which echoed the same things. "We will probably tell them when they are old enough that any children born from this will be approaching the age where they might find out, so it doesn't come out of the blue. They are too young now – I don't want them to misunderstand why we did it, or feel it was any reflection of how we feel about them." If she had been younger, she says, she would have donated again. "It's a little more involved than donating blood, but it's fundamentally the same thing: it's something my body doesn't need any more that other people can use." But doesn't the genetic component make it feel very different? No blood donor will turn up in the future, perhaps seeking a relationship. "But that's really positive," she says. "To be a part of someone else's life in any respect is a privilege." The doctor Gillian Lockwood Medical director of the Midlands fertility services. Dr Lockwood, who has worked in fertility medicine for more than 20 years, has the manner you would want in a doctor – warm, but direct. Since 1992, 192 babies have been born at this clinic using donor eggs. Donations for strangers were always uncommon, she says – eggs donated from female relatives were more usual, as was egg sharing. When the payment of £750 per cycle was announced last year, Lockwood says there was a flurry of interest from young women. "But when it was explained what was actually involved, the majority of would-be paid egg donors decide it's not for them. I've always been very concerned that we make it clear to donors, particularly if they haven't completed their own families or even started yet, that although modern IVF is very safe, it still does carry some risks." In the UK, the number of women treated using donor eggs has hovered around 1,300 every year since 2007. For the recipient women and couples, "it's still a very big jump for a couple to go from recognising they need fertility treatment, to being prepared to use donor gametes." Some people are very particular about the characteristics they want their child to have, "but normally by the time people have made that big emotional jump, they're not going to be picky about hair colour. If they are holding out for a tall blonde who is good at tennis, they're going to have to go to America, go through the catalogues and pay $20,000 an egg." Matching for people from ethnic minorities is more difficult, she says, "because gamete donation is not something that is practised in most of the ethnic minorities. That may be why people are increasingly going to India – because it can be kept secret, but also because they can get eggs of the appropriate ethnic match." Lockwood, who is ethics spokesperson for the British Fertility Society, thinks the legal framework surrounding egg donation still has some way to go. "Since they didn't make it legal for parents to tell their donor-conceived children, we know that the majority aren't told and won't find out." If the parents of a child need to find out medical information for their child, for instance, they can apply to the HFEA. "Although donor-conceived children, if they know, have rights to identifying information, it's not reciprocal. Many of the women I have spoken to about egg sharing have said, quite reasonably: 'What do I tell my own children?'" Lockwood says. "If I tell them I was an egg donor and their half brother or sister never wants to get in touch, that will leave a vacuum; if I don't tell them and suddenly 18 years down the line a stranger gets in touch, how destructive could that be?" The other big question, she says, is why women are in need of donor eggs in the first place. "It's because society isn't making it possible for women to have babies naturally at the time nature intended. Certainly a lot of the women I see simply didn't meet the right person at the right time, but it's still amazing, in spite of compulsory science in the national curriculum, how many women – and men – think that 35 is a good time to start trying." The recipient (2) Ruth, 37 Lives in the Midlands with her partner and nine-month-old son Jack, who was conceived at a clinic in Greece. Ruth sits in a room at the back of her house on a quiet estate, overlooking the garden, her son on her lap. They share similar colouring, and people have told Ruth how much her son looks like her. "I think it's something people tend to say, but it's nice that I get it as much as people who have a genetically-related child," she says. Ruth decided to try for children when she was in her early 30s. Being in a relationship with a woman, "I started thinking about how to go about it. I knew someone who always said he would be happy to help, but when nothing happened after a good few tries, I thought I should have some investigations." The NHS isn't very helpful if you're not in a 'proper' relationship, so I had to have them privately" [draft guidelines published in May means IVF may soon be available to same-sex couples on the NHS]. Tests found Ruth had been through an early menopause. An egg-share was suggested, but Ruth says she didn't like the idea that her baby could have full siblings living in the same area, probably born around the same time, as the egg-share would be done with someone at the same clinic. "I know the chance of siblings running into each other are very low, but I thought I would rather not have to worry about it," she says. "I could go abroad and limit the chance of there being any genetic relations nearby." Her partner is older than her, "so it was always going to be me who would try for a baby. We thought about swapping when it became clear we would need to have an egg donor, but my job is better for maternity leave and I was keener to experience pregnancy." They went to a clinic in Spain first – she says there were lots of British people there seeking treatment – but "it felt like a conveyor-belt and I didn't feel happy there". She then found a clinic she liked in Greece. Ruth was able to tell them what she hoped for in a donor. "I quite liked the idea of someone with a similar academic background – someone who went to university. I found out a fair bit about her, like physical characteristics, health and personality." She went through a similar process to choose a sperm donor. The anonymity was a concern, she says. "I gave it a lot of thought. Is it fair on a baby not to know its genetic parents? I would have preferred the system like here, where he could contact the genetic parents if he felt like it. There is the opportunity if the clinic is still in touch with the woman to try and find out more, but there's no guarantee. But then there's no guarantee now that people will be traceable in 18 years in the UK." Ruth has told few people about Jack's origin – only trusted friends, but not her family. "I didn't think my family, especially the older generation, would have coped very well," she says."I want to be open with him when he is old enough. The older generation maybe won't be around, or won't want to know so much and the younger generation, my siblings, probably won't have a problem. Does she worry they would treat Jack differently if they knew? "Possibly. He might not feel as much their own grandchild. Maybe I'm underestimating them, but I thought 'I'm not going to go through that.'" Did she worry the baby wouldn't feel like hers? "It would have been nice if it was genetically my own child, with some genetic link to my family, but I was always reasonably relaxed about genetics. I'm a believer in nurture. I feel so grateful [to the donor] but now I think about it very rarely. He feels like mine, and I always suspected he would." Article: 13th December 2012 www.m.guardian.co.uk

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