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Naomi ' Interview 28

Age at interview: 35
Age at diagnosis: 30
Brief Outline: Naomi and her husband conceived twins using donor eggs and donor sperm. They travelled to Spain for treatment.
Background: Naomi is a project manager, married to Martin (Interview 29). Ethnic background' White British.

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After trying to conceive for a year, Naomi and her husband went to the doctors and started to have tests. Although they were originally told that her husband’s sperm was OK, they later found out that he had a low sperm count and that they would need ICSI treatment to conceive. Naomi’s blood tests originally did not show any hormone problems on her side. They had two cycles that did not work and on the third cycle they decided to leave the embryos to develop to blastocyst stage before transfer. But the embryos arrested before transfer and the transfer was cancelled. This result suggested there was a problem with their embryo quality and doctors told Naomi and Martin they should really try with donor eggs. This was a huge blow for them both. They took some time off treatment and started to investigate adoption. After eighteen months they had not made much progress with the adoption procedure, and found they felt strong enough to reconsider fertility treatment. Naomi and Martin decided they would try with donor eggs and donor sperm and travelled to Spain for treatment. The first cycle was stopped as the donor was producing too many eggs, but the first full cycle of treatment was successful and Naomi was expecting twins at the time of the interview. 

 

Gradually, over a year of trying, Naomi and her husband realised that they had fertility problems.

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It wasn’t so much a shock, it was gradual. It happened, you know, every month my period would turn up. I would be, two days before it was due I would be feeling the dragging pains in my stomach and it was like, okay it hasn’t happened this month, and then there would be the two days of thinking, well they do say that pregnancy symptoms are very similar to period pains, so maybe it has happened. And then the period would arrive and I’d be in tears, and [husband] would be upset, and it would be, right back to it next month. And it kind of takes a bit of the romance out of it to be honest. So it wasn’t that it was a real surprise.
 
I think when we finally found out, we had been trying for over a year by then so it wasn’t a shock. I think in some ways it was a relief to find out that there was something. I mean it must be so, so hard, for people that fall into the unexplained category. Where you know, we have got friends who are she’s fine, and he’s fine, and there was absolutely no reason, why they can’t have children, but yet they have to have IVF to conceive both of their children.
 
 

Naomi and Martin had multiple factors contributing to their fertility problems. Martin knew that...

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What didn’t help us, was the misdiagnosis that my husband had, where he was told by his doctor, very respectable. So we then had the discussion about how he would have felt had it not been very respectable and you know, he would have felt really, really guilty about things and, and it turned out that it was a problem. So, I then, he’d opened up to me, may be in ways that he wouldn’t have wanted to. I think it is actually beneficial that he did, but it was quite difficult for him I think. 
 
And then also what didn’t help was the fact that I had had some irregular, some slightly high hormone readings earlier on, but they were just brushed under the carpet, you know, they’d found our diagnosis. They pigeon holed us being right infertility, that’s your problem, male factor infertility you need ICSI. Whereas I still feel very strongly that they should have done further investigations into me, because there’s hormone level called FSH, which my reading was high, and that is a sign that you potential, you are going to have a low quality or a low quantity of eggs. But they can overcome it to a degree in terms of quantity with the drugs that they give you during the cycle. So they kind of masked it for us. But actually I still think, the fact that I had that four years ago, and I’m no potentially going into an early menopause, they’re tied. But it does seem to happen that a lot of people I know have been given one particular diagnosis, and then all investigations have stopped. They then haven’t uncovered further problems.
 
So that was… it was difficult to deal with the diagnosis at the time. It was also quite difficult to deal with the sort of anger and upset after going through the trauma of three failed cycles, to think well actually was it really worth it, should we have done that. Or should they have done some more investigations early on and found out there was more of a problem.
 
And did you ever talk to the doctors about that?
 
They said that a lot of people with my level of FSH do go on to conceive perfectly well with IVF, which that’s may be the case, but there are other tests that can be done along side of FSH which I have also had done which have indicated that probably it wasn’t going to work for me. But they just say it’s a case by case basis and you know, no one really wants to talk about it.
 

 

 

Naomi chose her clinic on the basis of their success rates, professionalism and personal touch

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We had three local ones. One did very, very small number of treatments every year. Their success percentage wasn’t too bad. But it was just sort of they only did egg collections on a Tuesday or a Wednesday and it was, you know, we didn’t feel that we could really rely on them I suppose. One was a London clinic that was, we just felt it was a bit production line when we went there. 
 
And then the one that we ended up going to, it was just so friendly. It was, seemed very professional but still hadn’t lost the personal touch. The nurses were lovely. And the doctors were really nice. And it was very local to us as well, you know, it was only about half hour, forty minute drive or something like that. 
 
So we made the decision on the clinic in the July and then we started up our cycle in October 2004.
 
 

Naomi conceived twins with donor eggs and sperm, but while incredibly grateful to medical science...

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Yes, I really resented it. Really resented the fact that we couldn’t just go to bed and get pregnant like every other couple can. The fact that, our children, well, the fact that now our children are actually genetically not going to be linked to us. In the miracles of modern science it means we can now have children it is amazing and we will be forever grateful to the people who donated their eggs as well. But it does anger me that we were never able to just go to bed, and have sex and have a child. You know, it’s not a right, that is completely the wrong word to use but it is what people see as a natural progression, and for that to be interrupted is really hard to deal with.

 

Naomi said that she never imagined that not having a child would take such a toll on many areas of her life.

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It must have taken a huge toll on you both.
 
It did. It was enormous. I think we were very lucky in that we’re both very open people. So we were able, all the way through, apart from as I say during the adoption we had some difficult times, but really all the way through we were able to talk about it. There wasn’t ever a time when I felt, oh I need to talk. I can’t speak to my husband about but I’ll go and talk to somebody else. But it’s so draining. As I say it impacts on every area of your life. It impacts on your friendships. It impacts on your family relationships. It impacts hugely on your work life, because the number of times in the last sort of six years, that I’ve said, no I won’t go for that job, because hopefully I’ll be on maternity leave in six months time or whatever. And hugely ironically, the only time that I actually did say, yes, I am going to go for it, I am going to do this thing, I am going do this opportunity I then got pregnant ten months later [laughs]. So it does really impact on the sort of decisions that you make. I joined my company because they are, one of the, well its great job, but one of the reasons was because they are such a supportive company for when people have families. Now I joined them in 2002. And it is now 2008. You know, I wasn’t expecting to wait this long.
 
So it does take a toll in a lot of areas that people just wouldn’t even think about, you know, no one would dream that not being able to have a child would make you cry when you go round Sainsbury’s. But it does.
 
 

Naomi was surprised how long it took her to recover from a failed cycle. She never expected...

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Then obviously it’s the huge stress about how many embryos there, are fertilised over night, are they going to survive the two days to transfer? Or the five days to blastocyst as in our last case. And of the two week wait is just hell, it is like you know, the two week wait, when you are just trying naturally. But times by a thousand, the investment financial, emotional is just huge. And you analyse absolutely everything. Everything that could possibly be… a pregnancy symptom or a period symptom gets analysed. You just obsess about it constantly. And then obviously when it doesn’t work it’s just devastating. It really is. 
 
And it takes a long time to recover from a failed cycle actually. What people don’t realise unless they have been through it, its grief. You are grieving for the babies that, you know, I suppose in its basic term we produce embryos, we produced what had the potential to become our children and on our first cycle we may even have named those embryos. We even had a little picture of them stuck to the fridge. We thought about them as our real, as our real children, and when they don’t make it, there is a real grief that you feel and you have to acknowledge that and give yourself the time to grieve for them before you are going to be anywhere near capable of moving on to do it again. 
 
So it’s incredibly emotional. But it’s always described as a rollercoaster. And it’s so true because it is just highs and lows constantly. Sadly quite often a lot more lows than highs. 
 
Did you know that when you went in?
 
We had been told it. Whether we’d listened or not is probably different. You always, everybody always says, oh it is a complete emotional roller coaster, but you don’t expect it to be as bad as it is, you don’t expect it to be as painful, emotionally painful. Certainly I didn’t, I never ever expected a failed cycle to hurt in the way that the failed cycle hurt. It was awful. Absolutely devastating. 
 
 

Naomi and Martin had started to consider adoption. A break from treatment gave them the breathing...

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So we were still fighting that, but at the same time, we also thought well hang on a minute, it is a year and half ago now, treatment doesn’t seem to be, the pain of treatment wasn’t so fresh in our minds I suppose, and so a lot of people when I had been going for diagnosis tests about my early menopause, a lot of doctors had said to me, “Do you realise you have still got a really good chance, with egg donor, if you wanted to go that route.” And we had said no, but it was, well why did we say no. And we figured that we had really said no, because at the time we couldn’t face doing any more treatment. Now we had gone down the adoption route and actually could very much come to terms with the fact that we were going to have children that weren’t genetically related to us. Actually the idea of donor treatment didn’t seem so scary.
 
So we looked into doing it in this country and overseas and we eventually plumped for going overseas, because the waiting list were a lot shorter and the success rates are a lot, lot higher as well. And yes we went over to [city] for an initial visit. 
 
There is several clinics out there. We sort of went out to meet one particular one that we had had personal recommendations from and really, really liked it. Very impressed with the facilities out there. The staff. The people. It was all really, really good. So we went out. 
 
We went out there, that was August. We then got matched very quickly with an egg donor. Unfortunately that first cycle, our donor actually responded too well, and they had to cancel the cycle because she was producing too many eggs and it would have been dangerous to her. That was in November. 
 
But we ended up going out there again in January this year, and we had a cycle and had two text book embryos put back in and I am now expecting twins. 
 
 
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Naomi had come to terms with using donor eggs and sperm. She felt that the twins she was...

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Because when we had done the adoption, when we looked into doing adoption, we were, as I said, come totally to the terms of the fact that we were going to have children who weren’t genetically related to us. But those were children who weren’t genetically related to either of us. Whereas when we decided to go to donor treatment, initially we were going for treatment with my husband’s sperm but donor eggs. And I really, really struggled to get my head round the fact that we’d have a child that was related to my husband and not to me.
 
As it turned out we ended up doing the donor sperm and donor eggs. So it is very similar to very early stage adoption I suppose. 
 
Yes.
 
But I did find it very, very difficult thinking that I would look at our child and see him and see his family and see all of his genetic heritage, but I would never see my Mum and Dad or my brother reflected in that child. And it was really really hard and it took a long time for me to get my head round it. And we went and saw a counsellor about it, and sort of gave me a bit of a license to air my feelings about it, I suppose, which really helped. 
 
It was, it was very difficult and it seemed like a really irrational thing to get upset about when we had already got our head around adoption, but it actually was, I think probably one of the hardest times that I had, that it was going to be to all intents and purposes, [husband]’s child and not mine. Yes, I would carry the baby and I would give birth to the baby, but actually genetically it would never be mine, it would be his.
 
And have your feelings changed about that now that you are actually pregnant. Does that change things.
 
My feelings changed I think after we went for counselling we then took quite a while to talk about it and by the time we went over to Spain for our initial appointment, I was actually very happy with that idea. So to the extent that we then found out we needed donor sperm, I was actually really disappointed about it, because I was thinking oh it would so nice to have a child that is 50% husbands and 50% the egg donor’s.
 
Then as it happens, when we got. On the day, we felt very detached from the whole process all the way through. So we were going through all the phone calls from the clinic, talking about the number of, well the scans, and how things were going, and me taking drugs, the donor taking drugs then finding out while we were out in [city] how many embryos we had got. How many eggs were produced and how many embryos we have, and we both felt, really, really detached from it.
 
Then we went into the clinic on the day of embryo transfer and we got a photo of our embryo that day of two perfect eight cell embryos and from the moment we saw that picture I don’t think we’d feel any different if they were genetically ours, to the fact that they are not makes no odds. They are our children and I can’t wait.
 
I think in some ways, it is actually very easy to forget that they are donor, and I find myself going for ages without thinking about the fact they are donor and thinking actually we have got this that we have to deal with because we will be very open with the children. I believe it is best to be open with children. And they will always know that they have been donor conceived, because it’s nothing to be ashamed of. And we can’t, neither of us can bear the thought of going through life with a secret between us and the children, that if it came out at the wrong time, in the wrong way, would have the potential to totally, totally wreck our relationship.
 
So we almost have to sort of reel ourselves back in and think, don’t forget, you have got this, that you have to deal with, you have to figure out how you are going to deal with it, because they just feel so much like ours. And they are ours. At the end of the day. They wouldn’t have been, they wouldn’t have even been created were it not for us going for the treatment, and they are growing in me, and you know, [husband] has been there every step of the way, so, its, no, I don’t feel differently about them now.
 

Naomi describes how they were very impressed with the professionalism and facilities at the...

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The [city] experience was fantastic. We went out there for an initial visit and we tied it in with a summer (break) which was great. We had five days in [city], went to the clinic for a couple of hours. We went for two or three trips to the clinic in the end. But we had never been to [city] before. Lovely city. Fantastic city. City break and a beach. It was just great. 
 
But the clinic was amazing. It was, the moment we decided that we’d sign up, or the moment that we enquired about treatment there we were assigned coordinator who spoke completely fluent English, was very efficient about getting back to us about things. No communication issues at all. Probably easier communication than we had with our clinic in the UK actually.
 
The doctor that we met, she spoke fluent, she was fluent in English, but had she not been our coordinator would have been able to interpret anyway. But the clinical facilities there are amazing, absolutely amazing. They are just, it was just for embryo transfer. I mean I have no idea about egg collections because obviously they weren’t my eggs. I didn’t do egg collection. But just for embryo transfer it was, you know, my husband was in full scrubs. You get your own room for you know, waiting in, and you wheeled back there afterwards for recovery. And it was just so, it seemed so far advanced in relation to what most clinics are like over here. I mean the clinic we went to is a very good clinic. But it is not a patch on how they did things over there. 
 
And you do have to wonder if the way that they do things over there contributes to the fact that actually have very, very good success rates.
 
 

Naomi described how difficult she felt it was for her husband to watch her go through all the...

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It’s not very dignified is it? I think it is very difficult, and specially I think when it’s a male factor problem, it is difficult to watch what your partner has to go through. As I say with us we were wrong in thinking this. When actually, you know, potentially there was nothing wrong with me. As we found afterwards there was something wrong with me, but it must have been difficult for him to see, you know, that I had to go through all these drugs, and all these injections, and all these traumas. So, yes, I think that is quite difficult. 
 
And then there’s the feeling that, you know, their part in it [laughs]. Off in the loos with a magazine it is not exactly glamorous is it? 
 
And I think with a donor its probably even more so. Because when we first had, when we were over in [city] and we went out there expecting just to be donor eggs and then we were told at our first consultation there were potentially some problems with the partners sperm that they really recommended we either had donor eggs and used my husband’s sperm, but had a lot of further testing, which was very expensive, wasn’t guaranteed to work, or that we went for donor sperm, we were very quick to make the decision to go for donor sperm, because we had already been down the adoption route, but I remember him standing there and saying to me, he just couldn’t believe how superfluous he was going to the whole baby making process, because he didn’t even get to go off with a magazine and a pot, you know, someone else did that bit.
 
 

Naomi was pregnant with twins conceived with donor eggs and donor sperm at the time of her...

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Yes, it’s weird, because on one hand I feel very different. And we have been going to NCT classes which have been fantastic. We have a brilliant group of people the NCT and there is another IVF pregnancy there actually interestingly. 
 
But you do look around the room and think God these people have had it easy. And you occasionally you find yourself resenting them for it a little bit. But what I find quite strange is, there is a bit of me that just loves being normal again, loves the fact that I can go along to these things and I am just pregnant, you know, I am not poor [name] who’s infertile and wow now miraculously she’s pregnant. And I love that sometimes.
 
But then on the flip side of that, there are times that other people don’t see this pregnancy as special as I see it. May be if I want to speak to somebody at the hospital or whatever and then I get really, really uptight about it. And so people can’t really win. They treat you normal all the time, and that’s not right, they treat you special all the time, and that’s not right either. But it does feel, I imagine, it feels very different to how a pregnancy would after normal conception. You know, it has taken us over five years to achieve this pregnancy. So it isn’t the same as somebody who gets pregnant in their first month of trying. I am not in any way saying that a miscarriage would be easier after normal conception, because fortunately I don’t know. But the thought of everything you have to go through to get pregnant again, just the logistics of it, and the emotions of it, I think it does make you a lot more aware of how precious what you are carrying is.
 
 

Naomi and her husband discussed that their lives together would be really happy, even if they...

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We had thought about it a lot. I don’t think I ever really accepted that it wouldn’t happen. I am not saying that was me being incredibly determined. I think that was me being very blinkered, and me just refusing to believe that it might not work. I think my husband was probably more geared up to it not working, but I think how ungeared up I was probably scared the hell out of him. And it was quite strange that it was the night before our embryo transfer in [city] and we were out for dinner and I actually said to him, “No if this doesn’t work we can still be really happy together as a couple.” I think that was the first time that I had ever actually accepted that it might not work, but that actually we would still be right together. Up until then, I think I had just thought naively, just thought it will work, it will work, it will work. I am just going to keep going until it works. And I imagine that probably scared him a bit, about what, there’s no guarantees, what if it doesn’t work?

 

Naomi said she felt hurt by some friends. She felt particularly hurt when a friend of hers, who...

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In a few different ways. I think it’s firstly not being able to talk about it. Which is their problem, and not my problem, I can see that now. It’s that they aren’t comfortable dealing with other people’s problems. But when it’s something that is so painful to me and they just don’t want to talk about it, because it is a bit awkward and they don’t really want to ask about how’s your latest cycle gone and we had one couple who were fantastic through our first cycle of IVF. They were absolutely brilliant. And when they found out they were pregnant with their first child, they came round, and made sure we were together and they told us, “We realise this is going quite hard for you to hear, but we are having a baby, we have just found out, we are really happy, and we wanted you to know really early on.” [Laughs]. When they moved onto the second child, we were just starting the adoption process, so I think their view was that we had packed up all our infertile feelings and put them in a box and weren’t worried about them anymore, because she ascertained that I was doing eighty, seventy, I was going fast down the M4 at the time she started to tell me she was pregnant on the phone. On my own in the car, doing eighty and she decided that’s a really good appropriate time to tell me she was expecting another baby. And then to add to it, that, “Oh it happened too soon, we’re really not that happy about it.” When she knows everything I had been through.
 
And other friends did the opposite, in that they won’t tell you they are pregnant because they think it’s going to upset you and then you find out from somebody else, or you know that they are pregnant, but they just haven’t told you. So it’s, yes, a lot of things like that. But it’s really just the not being willing to talking about it.
 
Yes, my best friend, from when I was seven I have known her, she doesn’t want children, she is not a family person. So she has no way of understanding any of the feelings that I have been through, but I can always talk to her about it, you know, she always listens to me, she always says the right thing. Whereas some people who should, maybe, be able to have be able to have more of an appreciation for it, just get it wrong time and time again. 
 
 

Naomi found the Internet very useful in researching clinics, especially when they were...

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So in terms of the internet you used it sort of to find information and also just as a sort of way of finding people to talk to about it, is that right?
 
Yes, absolutely. It was finding information, firstly about the condition. About the various different things that were wrong with us. Then researching clinics, so especially, it was especially helpful when we came to make our decision to go overseas, because how on earth would you find out, if you didn’t have the internet, how on earth would you get unbiased views about clinics in Spain for example, or in the Ukraine or wherever you choose to go. Whereas there are communities on line now, with so many people who are able to give you unbiased, very practical advice about it. And also the support when you are doing it as well. So I think also the internet probably helped me because of the sort of forums and chat room type things that I got involved in. It did mean that I probably wasn’t obsessing about quite as much to my husband as I would have been, had I not had those outlets as well.
 
 

Naomi said that perhaps friends and family need to realise that they can’t win. But to try and...

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Find out what you can about the condition. Don’t ever, say, “Oh I know it’ll work for you.” Because my doctor didn’t know that it would work for me. Nobody knows that it would work for me. How can somebody else know that it’ll work. It’s something people to say to make themselves feel better and it actually makes the person they are talking to feel worse.
 
Yes, find out about the condition, try to understand the devastation it can cause. 
 
And also this is a really hard one but I suppose try to understand that actually you can’t really win. There are times when your friend will want to talk about and there are times when your friend will not want to talk about it. I think the best thing anyone ever did, ever said to us, was after our second, was it our second cycle, I think it was, I had a voice mail message from a friend of mine who said, “I just don’t know what to say. But if you want to talk about it I’m here.” And just acknowledging that you are not an expert on what they are going through, you don’t understand, so don’t say you do understand. Just be there for them, if they need it. If all else fails you know, a hug and a glass of wine normally works quite well.
 
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