Antenatal Screening

Father' The hospital has a chaplain who is sort of multi-denominational, and he talked through with us the various options that we could have for our baby once she'd been delivered. 

And once she was born he did come back again and, you know, initially they'd taken her away but he came back with her in a basket and gave her a blessing. That was a very emotional time. And my wife looked at our baby. I didn't. I couldn't bring myself to do that. It was too upsetting.

Mother'  He has an image of, in his mind, of a little toddler with blue eyes and blonde hair that he likes to keep. And he was at peace with me wanting to see her, and I was at peace with him not wanting to. You know, we both handled it a different way. But I mean he was there, he just didn't - sitting on the bed with me. 

And we anointed her hand with oil, and so I took his finger and - because of course her hand was only as big as the tip of your index finger. And so, yeah, we had a blessing ceremony and a naming ceremony with her. So that, that was nice, wasn't it?

Father' Yeah.
 

Well, the ARC leaflet explained about, you know, what would happen, that they offer you to hold the baby, to see it. They'd take photos. But I couldn't bring myself to see it, because by then, as I said, I'd sort of cut myself off thinking it was a baby, really. 

That was the only way I could cope with it, and my husband didn't want to see him. So they took him away, took some photos in a little Moses basket and everything, and they did say, you know, 'He's downstairs, if you want to see him at anytime'. So yeah, the ARC leaflet explained exactly that. So it did happen how they said, and it depended, if I'd stay in or whatever overnight, depending how I was, but because it was six o'clock in the evening I stayed in till the next day.

Did you look at the photographs or keep them?

The next morning this midwife specialist came in. I'd been alright until then, and then I just, it had just hit me I think, what had happened, really. And I was just upset, just as she came in, you know. And she got the photos and she said, 'Well, it's up to you. It just looks like a little, a normal baby. It's just small'. So I had a look at them but my husband wouldn't look at them, and he's never seen them.

You kept them?

Yes. I look at them every so often.

Looking back, do you think you would have liked to look at the baby?

At the time I thought, 'No, I've done the right thing', you know, but yeah, I think, sometimes I do think, 'Yes, I wish I had seen him.'

Did, when the midwife specialist came to see you in the morning, was it still an option? Did she discuss that with you?

Yeah, I think so, she did. I mean, you know, they were very good like that, offering you, you know, if you wanted to. And I knew the option was there, but I suppose I was just scared and guilty, and everything else. And as I said, I'd tried to blank it out saying that it wasn't a baby, you know. 

I didn't name him, because I thought that would have been more, you know, that he would have been actually there. So I did blank it out, so that's probably another reason that I didn't really want to go and see him, at the time.

What would you say to other women who are thinking about that, from your experience, whether or not to see the baby?

I mean, I know it does, it goes with how you feel at the time obviously, you know. Everybody's different and everybody has different thoughts. But it probably would help a lot of people, I would think, if they did, you know, decide to see the baby. I think it might help you come to terms with it a bit more.  

I mean, I seemed to get over it quickly and everyone was amazed. I mean, I was off work for a few weeks but, you know, I went back and I carried on as normal and - but I think it's affected me afterwards a bit, really, even though I don't really talk about it much to people.
 

My partner chose not to see the baby, so he just went off and telephoned my Dad. And they took the baby away and then brought it back in like an egg-box. Oh, just peace, I think, to see that - oh, because when you look at scans you're not quite sure, it's not, you know - but when I saw the baby you could definitely tell that it wasn't well, that it was swollen around its neck, but had beautiful eyes and it was just lovely to see it. It was a final thing for me to do - well, one of the final things to do.

Did you know before the birth what sex it was going to be?

No.

And you know now?

I think so. I'm not 100% sure.

Right. What would you say to other women about whether or not to look at the baby or to have a photograph?

It's a very personal decision, very, very personal. I think it depends, at my stage of pregnancy it was very early, so you've got to be aware that it's not going to look like a baby. Well, it does look like a baby but it's very different. It's just a very personal choice but for me it was the right one to do. 

I'd carried that little baby inside me for nearly 4 months and that was my hopes and dreams in that child. And it was knowing, I saw for myself that it wasn't well, so that was positive, really. It wasn't something that I could think about in later days and think, 'Oh, you know, was it really? Were those results right?'  

It was reassuring yourself that it was true?

Mmm.

Has your partner ever regretted not seeing the baby?

Not that he's told me.

Has he seen the photograph?

No. We've got photographs and if he wants to, then he will look at the photos.
 

And then another midwife came in, I think she were assigned to us, I don't, I've forgot what time now she came to us. Not, she was a nice woman, she introduced herself really nicely, young. And then said, 'Have you brought some clothes for your baby?' and I were just absolutely shocked. I went, 'Pardon?' She went, 'Have you brought some, an outfit for your baby?' I went, 'No' and she went, 'Oh. No, it's all right'.  

And then I thought, 'Well why?' I says, 'Well could I have brought an outfit for my baby?' She went, 'Well, yes'. Well I says, 'I didn't think anything'd fit my baby' you know, thinking I were only 20 weeks, how big was this baby? She went - I said, 'I've got some outfits at home but I weren't expecting him till 40 weeks, you know. They won't fit him.' She says, 'Oh yeah, a newborn outfit will fit your baby'.

So I were right confused, and I were in a bit of a dazed state because I'd had some, I don't know, I'd had some painkillers. So I said to my husband, 'Oh, I feel awful now, we've not got an outfit for us baby'. He goes, 'Well, what can we do?' I says, 'Well go, will you just phone my mum and tell her?. She had our house keys. 'Will you tell her to go through the bags at home and bring the smallest outfit she could find?' which with my first pregnancy we just went out and bought all sorts, not thinking anything'd go wrong, so I had bought a few outfits. 

So she had the sort of daunting task of rooting through all the baby's things to find the small outfit, knowing it were going towards a baby that weren't going to live. So she brought it to the hospital at 6 o'clock at night. And so we were there waiting. And we'd bought the baby a teddy bear which I wanted to give him anyway.

Another midwife were assigned to us I think at about 8 o'clock at night, and came in and said, 'I don't know what all this is about you having an outfit for your baby'. She says, 'Your baby will be far too small for an outfit to fit it. I'm really sorry that you were told otherwise, but we can't even try to dress baby at 20 weeks'.  

So I just thought well, that were a bit strange, you know, causing all that sort of upset to me, and my husband and my mum, you know, strange. And then I thought, 'Did she know that I were 20 weeks? Did she think I were having a, my baby were going to die, but did she think I were 40 weeks and, you know, I would just, it'd be a stillborn baby, something like that?'  

And I just thought maybe she didn't know the full story, which it turns out that, I think she didn't, but it's not been admitted. But I can't imagine why any, a midwife would think that a 20-week-old baby would fit a newborn outfit.
 

But nothing else was said, you know, realising when I came home I didn't know things about blood loss, or I didn't know things about milk production, you know. I never expected that I would get milk and it was such a shock then when I did. 

You know, I wish someone would have said, 'You, you could get milk and if, we can take it away' which they can do with a tablet. So I were never told things like that. They said did I want my midwife, midwife to come and see me, which I said I did. She come and see me a couple of days later, but then I was sent home sort of clueless, really.

I mean, looking back over it, that's something that could have been done differently?

Yeah, when I wrote to the hospital they said that they had an information sheet for blood loss and contraception and milk production, but it was out of print at the time, so I didn't receive one. 

So I wish I would have known because it took, the couple of days from me being discharged from hospital and the midwife coming were a long time when I was losing blood, thinking, 'Is this blood loss normal?' and 'Will I get milk?' Well, I did get milk but, 'When will it stop? And will it stop naturally, or will I have to have some, will I have to take medication to take the milk away?' 

Which were quite upsetting really when I thought, 'Well, I've got milk and I haven't got a baby' you know. It was quite strange not knowing when it'd stop and things like that. And also sort of passing clots and things like that. 'Was that normal?' And, 'What, did I have an infection?' because I didn't feel well when I came home. I felt quite shaky, which I now know is normal after pethidine and, you know, pain relief and also a drug to deliver the afterbirth. 

You can get quite shaky and sick, feel sick afterwards. I was just thinking, 'Oh, you know, have I got an infection now?' So a midwife came to me two days later, which was a community midwife. 

I'd not seen her before, because my midwife were unavailable, so a community midwife came to see me and just said, she explained about milk and said that if it, you know, if it got too bad we could give you a tablet but mostly it goes away by itself, and that, you know, blood loss would last anything from 3 to 6 weeks, and what I was, you know, experiencing was normal.  

So I felt a little bit better that, you know, after she'd took my blood pressure and my temperature and things like that, so I thought, 'I'm not poorly, you know, I'm just, you know, normal.'
 

And what they would typically do was, because I was always far more emotional than my husband and I would always, there would always be something that had happened since our last session that would make me cry. And I found out that I was crying, most days there would be something that would make me cry, and whether it was a little one or a big cry just depended on what the particular situation was. 

And my husband had gone back to work, and was working like a complete idiot. I mean he was working sort of 18 hour days and throwing his heart and soul into that. And what they did during the sessions was spend time talking to me about what I was going through, because I wouldn't, you know, when my husband came home from work I wouldn't have said, 'Oh, I've had a horrendous day and such and such happened and I cried,' because I wouldn't want to trouble him with that information.  

Whereas this situation allowed me to talk about what had happened to me, because he had no idea what was happening to me, and in a situation where he wouldn't say, 'Oh, you're being silly,' or 'What on earth did you do that for?' or 'How embarrassing' or 'Can't you control yourself?' or 'I'm really sorry, how awful for you', or any of those kinds of things. It was very controlled.  

And so that whatever he said to me, they would then say, 'Well, you know, have you thought about maybe that she's feeling this or maybe that she's feeling that?' So it was a really good way of me communicating through the counsellor to my husband. And then, she would then pick up information that he'd said and come back to, 'You said such and such about how, you know, people at work aren't interested in talking to you and - tell me what that feels like, and talk me through that.'  

And again, she would then enable me to hear how he was grieving, because he wouldn't tell, he wouldn't tell me. And the main difference is that men try and be restorative, so they want to make their partner feel better, want to take their pain away, want to look after them, want to provide for them. So they go off to work and they deal with it, because they're blokes and they have to.  

And when I'm crying, he can't cry because he has to comfort me. And when he's crying, I get upset because he's crying and I cry, which is absolutely no use to him whatsoever. So this gave both of us an opportunity to express how we were getting on with our grieving and really understanding how different it was for us. And I also noticed that my husband would get very angry with me about ridiculous things, you know, like I hadn't put the plate in the dishwasher or whatever it was, and he would blow his top.  

But it wasn't about that. It was the fact that something had happened to him during the day that had made him think about our son and he couldn't deal with it at the time, so it had been in the back of his head all the way through the day, and then something in the evening would cause him to pop, and that was it. 

So I needed to understand that his anger wasn't the fact that, you know, that the plate not being in the dishwasher was a problem. It was actually the fact that he needed to sit down and talk about what was happening with our son. And also that he, whereas I wanted to tell everybody, quite happily and willingly tell people, complete strangers, friends, family, I just wanted to talk about him all the time. And it didn't matter how upset I got, I just, I wanted to tell people.  

Whereas he didn't want to tell anybody, and would keep it very, very close to his ches

And you talked about not realising the kind of impact it would have on you emotionally. And is that something you both feel, that it's...?

Father' Myself probably to a lesser extent in as much as - well, there are various elements, really. One is, although I took time off around the time of the termination - we were off for probably getting on for nearly three weeks at the time - I did go back to work. 

And work, you know, takes in, sucks in your day and occupies your mind and so on, and therefore as I say after the procedure had happened I was back into a, you know, a way of life, sort of thing, [wife]'s work is different in so far as she doesn't work all the time, and as a consequence she had more time to, to dwell.  

And it was also physically her body that had gone through the whole situation. So I think it is different for mothers as opposed to fathers. You know, we grieved together. We cried an awful lot during those weeks and months, but it was different for me. 

And I think I probably also had less doubt about the correctness of our decision. I felt that - perhaps selfishly, I don't know - that it wasn't right to bring somebody into the world with all of these problems. The Turner syndrome has a lot of problems with it in terms of growth hormones and so on. This baby, this child would have had to have injections all of its growing life.  

Every day you have to administer an injection. 

And people will say, 'Well, you know, diabetics have that' and so on. But it was, you know, something like that, and as they get to puberty they wouldn't grow at the same rate as a normal child and they'd get teased, there's behavioural problems. And then there are all the physical problems as, that, you know,  we've talked about in terms of heart problems, I think there's  kidney issues, problems with kidneys as well?

Mother' Horseshoe kidneys.

Father' Yeah, so you know, there were a lot of things there that made me think that it wasn't right to bring her into this world. But I miss her desperately and, you know, we still think about her a lot, you know. She's our first daughter.

Mother' Yeah.
 

I think it's opened my eyes to the fact that it isn't just me to think about, that it is just, that we are a partnership together, and how is it going to affect our lives? And I think instead of me just jumping in with both feet and saying, 'I'm not getting rid of it', I have to take into consideration my husband's feelings as well. 

As with [daughter's] decision, you know, I think still part of me wishes that I'd carried on to full term and I, you know, I'd always, 'What if?' There is always a, 'What if?', so if I did go full term with [daughter]. 

But then I know deep down that that wasn't the right decision to make, but then you always do question your decisions that you make afterwards. But I think it's, I think it's opened my eyes that it's not just my decision at the end of the day, it's not just going to affect me. 

It doesn't matter how much I feel I can cope with it, because I can cope with it, knowing that I've looked after children with disabilities, it's whether [husband] can cope with it. And if I went ahead and said, 'Yes, it's got Down syndrome. I'm keeping it', would it mean me losing my husband because of it? And would it be worth me putting, you know, my marriage through something like that, just for the sake of, you know?  

I know, it's a baby and it's still a living human, you know, it's a human being, but when it comes to something like that, a decision like that, when you find, you know, your husband is your soulmate and he's your best friend and you want to, you know, you've been through so much together, that would you put everything like that in jeopardy just for this little thing, that everything, you know, you may bring this baby up to be perfectly, you know, have a normal healthy happy life but - apart from its disability - but then there may not be a father in the picture, and is that the right thing for the baby? 

And I think it would, I think it's opened my eyes to that fact, that it isn't just my decision at the end of the day. It's his decision as well. And if, say - obviously this pregnancy we haven't got a defect that we know of - but with future pregnancies how is it going to affect this baby, you know, as a sibling? How difficult is it going to make it for this baby to grow up knowing that all the attention is going on the next one because they have got this problem?
 

Mother' I'm really open about it, because for one thing I'm at peace with my decision now. I felt a, a bit - I still feel guilt, because I'll never know if I did the right thing. You never know when you make decisions like this if it was the right thing. I know that my decision, our decision, was motivated through love for our child, and just wanting the best for our child and not wanting to see her suffer, and not being the cause of that. 

I felt we're given this information for a reason. And, you know, people say, 'Oh, you shouldn't play God'. And I think to myself, 'Well, actually God made all this testing.' So what am I supposed to do with this information? I think there's a reason why I found out this information and...

Father' But it's not something that we, you know, we don't openly say. You know, people ask us quite a lot at the moment, you know, 'Is this your first child?'. And we, we say, 'No' --

Mother' You say, 'Yes' and I say 'Sort of. It's the first one we've made it this far with'.

Father' Yeah. But you don't then, you don't just blurt out, 'Oh, no, we terminated, you know, a life last year', because a) it makes us feel uncomfortable, and it makes the person asking the question even, feel even more uncomfortable. And because abortion, termination, call it what you want, is still a taboo subject, it's not something that is readily talked about, in spite of the numbers and so on.  

And the distinction between termination for abnormalities and social terminations and all the other issues around abortion, it's not something that you just come out with, really. And so although we've opened up to, you know, obviously our family and close friends and so on, it's not something that, unless someone else has gone through it, that you, you easily talk about.  

It's probably easy to talk about to people who've had miscarriage and stillborn babies because often, you know, their babies have come out like that because of birth defects and so on. It's just that they didn't have to take the decision, they didn't have to make the decision.

Mother' The decision was made for them.

Father' Yeah.

Mother' Yeah.

Father' Whereas, you know, as I say, you know, the clich' - we were playing God, sort of thing.

Mother' Yeah, we made the decision. That's the hardest part. And you know, I think, 'Oh, if I would have only miscarried during those days when my body was trying to do it'. But I'm pretty honest with people, because I've made this decision, I'm going to live with this decision, and I know that people are going to judge me. And people that judge me, I think, 'You're so lucky not to have walked in my shoes and that you're able to judge me. I'm so glad that you can do that, that you have the naivety, because I don't have it any more.'  

And when people say to me, 'Oh, I'm pregnant', I say, 'Oh, well, did you have your 12 week scan?' and 'How did everything come out?'  And pregnancy is, it's not fun. It's not about, 'Is it a boy or a girl?' now. It's, I say, 'Well, does it have 46 chromosomes?' And, so that's a bit, kind of no fun.