Liz ' Interview 12

Age at interview: 46
Age at diagnosis: 29
Brief Outline: Liz is a midwife who had her son through ICSI 10 years ago, six years after starting to try for a family.
Background: Liz is a midwife. She is divorced and has one son. Ethnic background' White British.

More about me...

After getting married, Liz and her husband started trying for a family, but after eighteen months they went to see their GP, as nothing was happening. Their treatment was on the NHS and initially they were referred for IUI at their local hospital. They had six goes at IUI, all of which failed. They were then referred to a fertility centre and Liz was told she was too overweight for treatment and that she needed to lose 3 stone before they would treat her. They went back to their GP and managed to get referred to another clinic. Liz had a private outpatient appointment and although doctors said the chances were reduced with her weight, they agreed to treat her. Liz first had to have an operation to remove some cysts from her ovaries before they could start treatment. They started with IVF, provided by the NHS. The first treatment cycle did not progress. The second cycle produced two eggs, but neither of them fertilised. Doctors then suggested that they try ICSI, again funded by the NHS, but at a different centre as ICSI was not provided by the centre that was willing to treat her. It was a battle to get the funding. Their first cycle of ICSI was a success and Liz had her son, 10 years old at the time of the interview. Her marriage broke down when her son was three and she is divorced. She had to have further surgery to remove ovarian cysts. The second operation resulted in a hysterectomy and so she was unable to consider any more children. 


Liz was refused treatment in one clinic because she was overweight. She and her husband had to...

Did anyone mention your weight to you before?
The initial referring consultant said, he didn’t say to me that, he just said to me, “As you are a bit over weight it is a little bit less likely that any treatment we will do, will be successful. But it wouldn’t stop you having any treatment.” You see. And it did. 
So and I knew I must have been, I have been overweight all my life, so I knew that it wasn’t anything, it wasn't a new story, I knew that if they asked me to lose weight. I knew it was going to be a long time before I would be able to, you know, I had lost weight once before and it took over a year to do that. So therefore, again it was all about delays and all about can’t start it. And I think the fact that I couldn’t. If they had said to me, “We are not going to let you do it now, but we will let you do it in two months.” That would have been all right. But what they said was, “No. We won’t accept you.” And at that point I thought that was the only route to get to it. 
So I thought that was the only route but it wasn’t the only route but at the time the door was just being slammed in my face and that was terrible. Because I then thought I had a year to lose weight, you know, and all this time was creeping on. I am getting on for 30 odd and you do feel that clock is really ticking. We are back to numbers again but that is true, the clock felt that it was really ticking. 
And so you then went to see another clinic?
And had IVF? Open cycle with them. Which resulted in…
Which resulted, one was it was sort of two really because one was a no starter because of no eggs. And the second one that didn’t fertilise. So that was sort of like two goes, but one was a non starter and the second one was… and then because it was a fairly local clinic, I thought, at that point, when it failed, I thought I wasn’t getting the right treatment. So you are looking elsewhere then. For the best treatment. You want the best, you want the best, you know. And then it was the process by which we could get the best because we didn’t have any money. So they would, you know, they paid bet sort of thing, you know. That is why we went to the third place really.
Did it feel like a real struggle?
Absolutely. Agony. It was awful. He was ringing at work all the time. He was ringing daily and this was like, this was a bit of a vendetta mission-type thing, you know. It was the fact that we were entitled to it, we were entitled to another go of IVF definitely because the first one of the two, at the local clinic didn’t count. So we had that agreed. And we were thinking of strategies all the time. You know, thinking what can we say to them. And what we actually said in the end was, what he said to them was, “Look if,” you know, at the point they were thinking of funding more than two and all this. “Is it not in your interest to give us the more expensive treatment in a good place and we won’t come back to you for another IVF. Because if we have another IVF it is probably going to fail.” That is where we were at. They were thinking of all these ideas trying to… but he was, it was a, we go like power from nowhere in our minds. We were just on it all the time. Because we felt like it was a right. And it was a right that we should be allowed to have the opportunity to try and be parents, you know. It really was. You felt a bit political about it. And I am not really political at all really either. But you did feel that that was an inherent human right, to be allowed to do what is the right treatment for you. Because they said to us, “There is every likelihood of these place where the two failed. Your likelihood is ICSI is your best bet. We don’t do it.” You know, so where do we get it done and they agreed that probably we needed more specialist treatment then they were able to give. So therefore everything pointed to this place, but to get to it was agony because it was not really within the catchment area, it wasn’t within their defined tertiary referral. There was all that about it, and then they had to have a special board to talk about us. And that in itself, you didn’t need it, we didn’t need it. All we wanted them to say was, yes that is fine. But we had to give evidence, we didn’t go and give it, we had to write a letter to say why we wanted it, and why we thought ICSI was the best and ever such hard work, ever such hard work. 

So it was agony of months and months and months of agony. Trying to get, and again the months of waiting were waiting and time was ticking again. 

When her ICSI cycle failed, Liz felt as though she was hit by a “domino of grief”.

Because of the ups and downs I think. The ups and downs of it all. Because one minute you are absolutely, you have the hope of it is the best place, there is, you know, and then the down of it is not happening, it is either not going to happen, you have failed, you now the emotional ups and downs are terrible. But the fact is that you feel that because there are other people around you are letting everybody down. It is not just yourself, you are letting everybody else down. And the other thing that I found very difficult was that when you felt that you had let them down and they were saying you haven’t let them down, you still feel like you had, but also you are trying to cope with their grief as well. It was like a domino of grief, everywhere. I did say domino grief, yes it was. And it was everybody else around me, felt sorry for you and wanted to help and support you, but you wanted to do the same for them. In a funny way, as well, so it was the whole ups and downs. Yes definitely the ups and downs of it all, emotional trauma. 
Grief is a funny word to use isn’t it? For…? 
I think it is right though. I tell you what I did feel like, when they there is two things I felt like. The second time when the egg didn’t fertilise and we couldn’t obviously, and then when the fourth embryo wasn’t suitable for treatment I felt like our babies had died. And that again is absolutely, totally irrational, but I mean they weren’t babies at all, they were nothing. I mean they weren’t anything were they? But I did feel like it in those labs were my little babies that had died. And the same with the two that didn’t make it. You know, the same again, I had visions of them just sort of like slipping out and trying to hold on and things. Weird dreams and things like that, you know, of trying to sort of come to terms with it. And that is why as soon as you get pregnant, got pregnant I felt like even though it was a ball of cells that, you know [son], I didn’t know it as [son] then, but it was my little baby, you know, and I think it becomes exacerbated, the feelings, I think, I am not sure if that is true or not. Because I haven’t really talked about it to someone who has just got pregnant on their own. But the feelings for the ones that did and didn’t make it, I think are amplified. But there is a feeling of grief, about, it being something has died and that sort of thing. I felt like when me Dad died that sort of thing. It is the same feeling definitely. Although nothing has actually died, there has never really anything been there. Do you know what I mean?

Liz, herself a midwife, described how while some will view an IVF pregnancy as normal, she felt...

But people do put you in the same category as a normal pregnant woman, and the people that pooh pooh the precious baby thing, because they think once you are pregnant, well you are the same as everyone else. Well you might look the same as everybody else, but actually you are not. Because of the nature by which you got pregnant. And there is a difference, I think.
And there is a difference because, is it because it took so long to get pregnant, or because you felt somehow there was more than likely to be something wrong with him, because…?
No it’s because you took so long, it took so long to get pregnant that is it. I don’t think it is more likely to be, I think it is the fact that if there is a bad outcome, you had a miscarriage, an early miscarriage or whatever you had, you can’t just say well leave it three months and start again, there is a whole raft of what you have got to go to get to it. Get to that point even. So it is the starting again thing, I think. Plus the fact that as soon as you get pregnant and that is the same for many pregnant women, particularly those who have had a miscarriage, even though it is a ball of a few cells, you see it as a baby. And then when you have been infertile you feel there is the baby that you thought you would never have, and then you don’t want anything to jeopardise you losing it. So it was, yes, it was definitely. It was all around the experience you have, had been through, but also the one that you didn’t want to go through again and that is what I felt any way.

Liz, a midwife, was so anxious during her pregnancy that she would regularly listen to the baby’s...

Do you feel, I mean you have obviously seen a lot of women in your professional life, did you feel that you were more anxious than most women?
Absolutely. Definitely. Every day when I went to work, I used to listen to the heartbeat. “She is at it again. There is again, listening to the baby’s heart beat again.” Oh the usual… it was a routine thing with me, because of the worry and professionally that is totally illogical to do that, because I knew that if I was feeling, him or her at the time, I don’t know, move then it was okay. But that wasn’t enough. Not enough reassurance, and so there were, and I did find this with other women who had gone for infertility treatment and because of that that made me more understanding of them. And previously I might have said, “Oh you know, don’t worry. You are all right.” But then I felt it. I felt it the same for me. And because of that, there was, and even down to worrying of there was anything wrong with him, my best friend was at the delivery and the first thing she said to me, “He hasn’t got it, he hasn’t anything wrong with him.” Because she knew that that was the thing I was worried about. Not that, you know, I don’t know, not that she went, “Oh isn’t it lovely.” It wasn’t that, she knew and that, she is a sort of like a really, really good friend, you know best friend. And she knew that that was my thing that I was worried. So that was the first, as soon as she could she reassured me that all looked well. So yes, I think it was more amplified, than I had seen in many women. Probably comparison of that would be women who have had a previous still birth or many, many miscarriages. And I have to say it is probably the same sort of anxiety that is felt. 

With the help of a book, Liz talked to her son from early on about how he was conceived. He was...

And [son] said to me, “They are asking at school about if I have got any brothers and sisters.” And I told him, from the very beginning, I have got a book, a book about it, about infertility, and how you explain infertility to children and that was very good. And he has always known that he is special. And we went to buy a bed for him actually, and I said… he had been a good boy, and I said to him, “Tell the lady why you are a good boy.” You know, “Tell her that you have been a good boy today.” He said, “I am a test tube baby.” And that was really sweet.
And he is quite, a very sensitive sort of boy. You know, at school, they are asking about children and brothers and sisters particularly and they had to go round and say what they had got. And [son] said, “I haven’t got any brothers and sisters.” He said, “There were three of us,” (because there were three embryos). He said, “There were three of us, but the other two didn’t make it.” It always gets me you see.
So, anyway, he would have liked, I would have liked and he would have liked more children, but you know we get on lovely together and we have got, he and I are just a lovely little family together and he is lovely and I wouldn’t be without him. So I think that is my story [laughs].

Liz felt that infertility was isolation like a “terminal illness” might be, you are on your own.


But all the people were feeling for us was sort of like sadness. And kept saying you would be a lovely Mum, you would be a lovely Mum and a lovely Dad and all this, you know. And that actually didn’t help very much. It just makes you feel worse actually, but what they are trying to be is kind and say, you know, it is definitely, I am sure it is going to happen. Always sure it is going to happen. Go on holiday and all the things, they try and give you advice about. It didn’t help at all. Not really. Not at all. It just made you feel worse, but the people are trying to help you and show their concern and all that, and it doesn’t actually help, because the thing about it, as you mentioned before, it is very isolating. And infertility is extremely isolating. I am sure the same as if it was as a terminal illness or whatever, you know, it is you, on your own. That is your situation, and whatever people say or do around you, it doesn’t make any difference actually. It helps but to you in that situation it is not going to make any difference. So I do think it is similar to that.


Liz felt hungry for information all the time.


But actually information, you do you want information all the time. You want more information. As much information as you can possible get and as you rightly said there wasn’t much, I wasn’t near a computer much, you know and access to a computer. So those newsletters actually that came from the originating fertility unit were very good, very good, very informative and then they had access to support and counselling if you wanted that. I didn’t actually take that up to be honest, because I felt I got of support from my family and friends, but you do and afterwards the same with newsletters and things, were very good. I just liked that. I liked that aspect of it. 


Liz called for health professionals to realise that while some won’t want to be nurtured and...


Advice to professionals? Without invading somebody’s space make sure that you understand that it isn’t just a physical process. That it really, really is emotional process. And some people won’t want to be nurtured, looking after, treated as the patient and all their emotional needs catered for, but many people do. So it is trying to get a balance of not invading the privacy, but also of making sure that they do feel looked after at a really, really difficult time. Particularly when things fails and give them time to come back to you, however many times they need to. To talk it through. And it is not just offering a counsellor I am saying, it might just be that, it might be they want to sort of talk to the people that have been dealing with them at the time. So it might be the nurses or the doctors, who can say to them, I can give you an hour of my time. And that might be valuable even then talking generally to a counsellor. Often it is specifics alongside the emotions that they want to talk about.

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