Interview 07

Age at interview: 38

Brief Outline: Her 3rd pregnancy' 20-week scan detected anomalies - baby's kidneys and stomach couldn't be seen. Specialist scan revealed baby had multiple abnormalities; parents agreed to amniocentesis which confirmed baby's problems were not inherited. Pregnancy ended at 22 weeks by induction. She has since had another baby.

Background: Pregnancy ended in 2002. No of children 3 + [1]. Ages of other children at interview' 7, 3 and 9 months. Occupation' Mother - mother, formerly TEFL teacher, Father' IT consultant. Marital status' married. Ethnic background' White British.

She had no painkilling injection before the amnio and was told to expect 'mild discomfort' which she felt was rather misleading.

Well I had the amnio at the first appointment at the big hospital. And it was one of those things where they say, 'This is a slight discomfort' was how they described it [smiles]. I wouldn't describe it like that.

And they pushed the results through quickly so that they'd have them ready.

How would you describe the amnio, in your own words, could you tell me about that?

Well the amniocentesis its like having a red hot poker put into your stomach it is unbelievable, unbelievable, because the other thing you have to do is stay still, you have to stay completely still, and they obviously watch on a scanning machine while they're, to make sure they get it, the needle in to the right place.  

And as I say they describe it as 'mild discomfort' it's rather more than 'mild discomfort' in my books. 

I don't think the amniocentesis took more than a few minutes. But the, because of the lack of amniotic fluid he had already said, he might 'I might have to do this again, if I don't get a pocket straight away I'll have to go in again,' and I was, and this was while he was doing it, because it hurt so much, I was just praying that he was going to get some. And he did.
 

Describes her realisation at the 20-week scan that something was very wrong with her baby.

I came back probably about 17 weeks pregnant and had the anomaly scan at 20 weeks and like most people expected everything to be fine and to come away with a lovely picture but unfortunately that isn't what happened.

What happened then?

We went, I went in to the scanning room and they're quite bland facially anyway, whether everything's fine or not they just look at the screen to start off with and do measurements but I very quickly realised that the woman's demeanour wasn't, even for a bland face, was concerning.  

And before they gave me any of the results she asked a colleague to come and told me she wanted to check something, with a colleague, and by then I was getting very concerned because I'd never had that happen before. And they actually asked my husband to come in before they spoke to me. 

And the first few things they said it didn't sound as thing, as though things were terribly wrong. It was just a few little things like the kidneys were hard to find, and the stomach was hard to find, but that might be because it wasn't filled with fluid. It was probably all right but hadn't had any fluid in it at the moment.

And they took us out of the scanning room, into a more quiet room while they typed up the report. And even at that early stage it was beginning to sink in that there was something really not right.  

And as, and as soon as I saw the pictures of the scan, having had two normal pregnancies, even I could see that there was a marked contrast between this pregnancy and the pictures that I'd had previously. There was a very marked lack of amniotic fluid which made it difficult, not even for the scanners to see, that made the picture of the scan look very, very different. 
 

She says that the phrase 'the outlook is very poor' was repeated and describes how it helped her accept the baby's condition was extremely serious.

And the scanner brought the report out, and the one thing that sticks in my mind was at the bottom of the report, having listed all the problems he'd observed, his comment at the bottom was 'the outlook is very poor.' And immediately I knew that you're not going to write that on the report for a pregnant woman unless it was very, very serious, and I think that was the moment at which I realised that things weren't going to be alright. 

My husband is more of an optimist than me, and it took him a lot longer. But all the following week I kept coming back to that comment 'the outlook is very poor' realising that, as I say, you're not going to write that on the bottom of a report for a pregnant woman unless its very, very serious.

Okay. Is that comment that was written at the bottom of the report did you see that by chance or did he use those words?

The consultant used those words, and it was on the report that I was taking home with me so I was meant to read those words, and although they were very hard to read, looking back at how the situation progressed from then, as I say it was at that point when I read those words that it hit, really hit home, how serious the problems were and I think I needed to know. I think it was the right thing to hear. 

But all the lists of medical terms a lot of the words are ones you don't understand even if they explain that whatever it is means that the stomach is growing outside of the abdominal wall and isn't growing normally, it's still a medical term. You can't relate to it, but a sentence like 'the outlook is very poor' I could relate to it, it did what I'm sure it was meant to do which was make me realise how serious the problems with the pregnancy were. 
 

She used the internet to look up medical terminology but she found it didn't help her understand what was wrong with her baby.

Well we were given all the medical terminology on the report, so we went, rushed straight home and looked up as much as we could in medical books and on the internet. 

And in some ways that was quite helpful because it gave us something to focus on and gave us something to do -you feel you want to do something practical and positive to make something good out of the situation - but in other ways it was quite negative in that [pause] we couldn't find out what was wrong with the baby by looking things up on the internet, there was such a complicated array of problems it, and there wasn't a specific syndrome or, that everything fell in to. So we ended up befuddled in many ways, that is it a heart problem that's led to, or is it a genetic problem that, that's led to this.

We probably ended up more confused, in medical terms by all the information we found and, and it amazes, having looked up all the things that can go wrong in a pregnancy, I mean its amazing it all goes right ever, its just [pause] you know so many possible ways that a pregnancy can go wrong at the different stages and the different outcomes. 

But it kept, all that first week it kept coming back, I kept coming back to the comment at the end of the report that 'the outlook is very poor.'
 

She understood that the hospital doctor had to ask her questions but said that he could have handled the situation more sensitively.

And I then had the job as I say of convincing the consultant at the local hospital that I'd made an informed decision about terminating the pregnancy. And I don't know if they do this for everybody but he questioned and questioned and questioned whether I understood the diagnoses, the prognoses. 

And he kept saying things like you know, 'You do realise scanning machines aren't crystal balls they, people make mistakes looking into them.' And when you're in a situation like that you want to hang on to any grain of hope there is, and I thought now is he telling me everything's going to be alright and they've made a mistake? 

Having got to the point of having made that decision sort of any grain of hope you hold on to it and you think well maybe he's telling me that they've made a mistake, maybe everything will be all right and - so I sort of stayed with my feet on the ground, and tried to explain that I understood what I'd been told at the, at the big hospital and from what they'd said there wasn't any hope and that I wanted to terminate now because I thought it would be much more distressing losing a baby at full-term.

I'm pretty sure they gave me a tablet after that appointment to start softening the cervix, once I'd convinced him and signed the pieces of paper that was it. And I remember asking the midwife when I, when I left, 'Can I go and have a drink now?' [laughs]. Because obviously when you're pregnant you can't drink, and especially if there's something going wrong you just, so that was one of the first thing I wanted to do. I said, 'Can I go home and have a couple of glasses of wine or a beer or something?' 
 

She valued the care she received from everyone on her medical team and felt the midwives took a personal interest in her.

I can't think of any way that I'd describe it as a positive experience, but I have to say there are various aspects of the medical profession that made it bearable. I remember thinking at the time that they made an unbearable situation bearable. The specialists at the big hospital, the midwife team in the local hospital, the midwives who helped me go through the termination, because you actually have to go through labour and giving birth, its not an easy thing. And it's a very special person I'm sure who can do that with a baby that you know, who you hope is going to be born dead - because that's the other thing is that some babies at that stage try to breath and I was warned that that could happen, thankfully it didn't, but you know its, [pause].

Some of what you know, some of the interaction that I had with the medical profession, would in another circumstance have been very positive, and I've got nothing but praise for them, the way they dealt with the information that they had to give me. The way they had to deal with the distress that we were obviously in. It was all done very, very well. 

And in a lot of instances it was because I'm sure they've had the experience of people coming in, they did it all day every day, so they know how people are going to respond, they know how you're going to respond better than you do. 

And in other instances like the team of midwives at the local hospital, I got the feeling that they really cared about, you know they gave a bit of themselves to the process and they were there was a couple of them that specialised in following pregnancies that ended without a live baby. And they helped, and they visited me at home afterwards. They helped with what was going to happen with the funeral and kept me informed. And I felt as if I had a person who cared about what was happening, to deal with after I'd lost the baby which is quite helpful. 
 

Describes how she found it very difficult to leave the hospital.

Well I spent the night in hospital after having the termination. Actually I had quite a good, good rest, having been through all the, the trauma of the decision-making and giving birth and losing the baby all in. And when we got up in the morning I wanted to see her again, I wanted to say goodbye to her. So we, the nurses very kindly brought her in for us, and we had a cuddle and said goodbye. 

One of the in, enduring memories I have was leaving the hospital, it went against every ounce of instinct in my body to leave my baby in a fridge in a the hospital. I just so desperately, desperately wanted to take her home with me dead or alive, I just wanted to keep her warm and look after her and... its one of those sort of almost out-of-body experiences, walking away from the hospital to the car. I can remember every move, every movement, every muscle I was aware of all of the bits of my body, and it was like trying to walk with lead, pulling myself away from the hospital. 

I just wanted to run back and get her. It was a really intense experience leaving, having said goodbye, to actually do that, walking away. 
 

Results from her baby's post mortem showed the baby wouldn't have survived for long and so she felt she had been right to end the pregnancy.

She had a post mortem, and again we were given quite detailed medical information about what had been wrong. And that was quite an important process because, the post mortem confirmed all of the things that had been wrong, and enabled the medical people to be able to say, she wouldn't have survived, with all of these issues she wouldn't have survived. 

And obviously, that made us feel relieved that we'd made the right decision. It would have been terrible to hear in the post-mortem that she had a kidney infection but that would have been fine and there was nothing else wrong with her. I mean obviously we believed that all these things were wrong, but it was good to have it in writing that they'd discovered all these things. 

She gave permission for a full post mortem in 2002 but was distressed that it took so long to get the baby's body back ready from the specialist hospital.

And I mean, you know we gave permission for any of the tests that they wished to carry out. Because I'm sure you can, we were given the option, you don't have to have a post mortem, and you can opt for less invasive post mortems, they can do, but we just said 'Anything you can find out we'd like to know.'

And was it after that, you had the funeral service?

The, one of the distressing parts of it was the fact that it took so long for the funeral service because she had a post mortem, and she had to have the post mortem at the big hospital, and then obviously come back. And it seemed to take forever. I think it was probably about two and a half months between giving birth and the funeral. 

They just, we just seemed to be in limbo for all that time. You couldn't move on, put a full stop, knowing that you'll have to go to your baby's funeral, was just, we couldn't put it behind us until after that event.
 

She cried everyday for weeks before realising after several months that she was starting to think about other things.

Well I don't, its never going to leave because its something that will be with me for the rest of my life. But, weeks and months afterwards suddenly you realise, that you had woken up and the first thing you did wasn't burst in to tears and then later on you realise that you got to lunchtime and you haven't cried yet. 

But then you know months down the line you realise you've got through a whole day without crying. But, I think it helped me having my children. I, the only way I can imagine what I went through being worse was if I didn't already have healthy children.

And a sympathetic husband.

And a sympathetic husband though we had our moments - it's a very difficult thing in a relationship. The children, I had helped me keep, I still had to get up in the mornings. I still had to make breakfast, I still had to make lunch, I still had to go shopping. You have to carry on with all the normal things. I'm sure it would have been easy if I hadn't already had children, to just lie in bed crying all day and not do anything. 
 

At first she didn't want to talk about her baby or what happened to anyone else and felt that a support group meeting would only have upset her.

I've never been to any meetings. They gave me two telephone numbers of people who lived in the area who'd been through similar experiences, but I didn't ring them. 

I don't know, but I just don't find it much of a comfort that other people have been through it, I don't, it doesn't help me in any way that other people have had the same traumatic experience. 

I suppose it might be helpful to hear that they've carried on with their lives and got on with things in a day-to-day way, but especially soon afterwards, I was just, I wouldn't have been able to speak to anybody about it. I certainly wouldn't have been able to sit like I have now and had a conversation, I would have just sobbed uncontrollably.

Describes how difficult it was to decide whether to have another baby because she felt so worried about the same things happening again.

The decision to have another baby after losing one, was very, very difficult. And even when we were losing our baby we, I was already asking questions, 'Will this happen again? Is this going to be, you know can I have more children or will I be running the risk of,' so even before we'd had the termination already asking the questions. 

And pregnancy is a worrying time anyway, you worry all the way through 'is everything going to be alright'? After you've had an experience like that, its [laughs] even more worrying. And its probably the worst thing you can do is worry because the last thing you want is blood pressure but you can't help it. 

But they told me that if I was going to have more children they'd give me early scans to check that everything was all right before I got to the 20 weeks, its up to week 16 (see 'Information 'section) I think you can have a termination without having to go through labour, which is obviously distressing to go through labour and actually give birth - or rather more than having an operation. But they promised me that they would do early scans before I got to that point. 
 

Ask questions and be as positive as you can.

As worrying as it is and as scared as you are about what the outcome may be, and you fear asking a question because you might not like the answer or the answer may frighten you, ask away. Ask away because you learn so much from that and if those in Intensive Care, and I have no reason to believe any different, are the same as the ones that dealt with my Dad they will answer any question you have got. They will even come forward with information for you. I think it is important to ask. I think that would help, I really do. 

Is there anything else that was important to you or any one else in the family during that time and when your Dad was back home that I haven't asked you about? Anything you want to mention or any message you would like to give to someone in a similar situation? 

Just be positive. Be positive all the time. And I think if you are positive, I think that goes round the family and people that are visiting, and you can take that to the beside as well. And you can feed off that and encourage people, you know whether it is the person that is in Intensive Care, talk to them while they are spark out. My Dad, to this day he doesn't remember us saying anything to him. Just remembers moving that one time. But be positive, as hard as it is to be positive sometimes, and talk.