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Their nuchal scan results gave them a risk of 1 in 21. They felt they needed certainty, so they had CVS (Chorionic Villus Sampling).
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When we saw the consultant immediately after the scan, he talked to us a little bit about it and said, you know, “That means that if you had 21 babies, one of them may have some sort of problem”. And he also said that, you know, people that he'd known that had had a risk of 1 in 2 had actually turned out to have perfectly healthy babies.
But still, obviously as a prospective parent you focus very much on the one. And it wasn't until I mentioned it to a friend or discussed it with a friend that he said to me, “Well actually that still means that you've got a 20 out of 21 chance of everything being fine.” But it's just human nature to focus on that negative, rather than to focus on the positive, I think. And that's obviously what we did until we had more information.
So you were offered CVS?
Yes.
Did you take up that offer?
I did. That was in a bigger hospital where they have the facility to do that. And we arrived for the CVS and that's when they said to us, “Would you like to have a fetal heart scan as well?” And I sort of thought, “Well, if it's on offer of course we should have it.” I didn't, don't think I ever expected anything to show up. But yes, we had the CVS there as well.
Because at this stage you were thinking, what you were being tested for was Down's?
Yes, some sort of chromosome problem. It didn't even enter my head that there might be a problem with the heart. |
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She expected CVS (Chorionic Villus Sampling) to hurt, but found it more like mild period pain. It was over very quickly.
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Yes, we were then taken to a side room and given a drink, you know, and said they'll come and get, call you for the CVS as soon as possible, but the doctor that was going to perform the CVS was just away at that time, he was in a meeting or something.
But I was the first person on his appointment list. So shortly after that - it'd be after about 20 minutes or so - we were then taken to the room where the CVS was going to be performed, and it was already full of doctors waiting. They were very good, you know, they explained what would happen.
But we were kept waiting for quite some time whilst they waited for this particular consultant to come and actually perform the procedure. Actually, I think one of the more junior doctors had expected that he would be performing it because he was sat there ready to do it and he was waiting for the more senior doctor to come and oversee it, but as it happened the more senior doctor came in followed by hordes of other doctors, because he's obviously very good at what he does and has a lot of people working with him, training with him.
So I think my husband counted that there were about 16 or 17 people in the room, at that point that, you know, he performed the procedure. And the other more junior doctor was kind of whisked out of the seat and he sat down and did it and it was all over within seconds. Absolutely amazing, I was put completely at ease, and it didn't hurt, and it was much better than I had expected.
Could you describe what they do, because for other people, contemplating a CVS, it would be helpful to know a bit more about that?
Well obviously the first thing to think is that there is a risk of miscarriage associated with it and there is some explanation given to you of that. Then the doctor basically said to me, “Hold my arm”, so I held his arm and he got out what appeared to be quite a large needle. And I have an absolute fear of needles and I was convinced I was going to pass out, although I was lying down, but he literally just put the needle into my stomach and pulled it out, and within, I mean, it literally was seconds. It didn't hurt at all. It felt like mild period pain, I guess, as the needle went in. And that was it, it was over in seconds.
They didn't have a scan to guide …?
He had a scan as well, so with one hand he was holding the scanner and with the other, and that was the hand I was, or the arm I was sat holding on to, and he said, “Just, you know, grip it tightly if you feel any pain”. And literally it was done in seconds, amazing, and I could see on the scan, I could actually see the anatomy of the baby for myself as well, while he was doing it. |
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She quickly realised in the heart scan that something was wrong with the baby's heart, and the silence was unnerving.
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And a doctor initially scanned me, and I think I knew quite soon that something was wrong because it was very quiet, and it went on for a very long time. 20 minutes later I was sort of still lying there thinking, you know, “What's going on?” And you don't like to interrupt them because clearly they're concentrating, they're looking in detail at something so amazingly tiny.
And eventually she stopped after about 20 minutes and said that she thought she could see something, and she said that she thought it was a heart condition called tetralogy, but she wasn't entirely sure because it was still very early. It was, I was still only 12 weeks pregnant. But what she'd like to do is have one of her colleagues scan me and she wouldn't mention to him what she thought she'd seen. She'd see if he came up with the same diagnosis.
The other problem was that the baby was lying with his arm across the chest, so they couldn't be sure that, you know, they were getting a clear picture. So they asked me to go off and walk around, jump up and down for a few minutes to try and get him to move. And then I went back in to be scanned by the male doctor, who again did something similar, sort of scanned for a while, got quite frustrated because the baby was lying in a bad position, but he said roughly the same thing.
And the other doctor, the female doctor who'd scanned me first of all, was in the room at the same time, and they had a discussion while I was there about what they thought it might be. But they both said, you know, that they couldn't be certain, that I would need to come back in probably two or three weeks time after the results of the chromosomes had been determined, and that the condition that they thought it was quite often was associated with something like Down's.
So there was a good chance that the CVS would cause a, you know, would highlight a problem. But they were very good and they drew diagrams of the heart and explained in some detail what this condition meant. And I think part of that was that we asked a lot of questions, but you know, they were certainly ready and willing to give the information that we wanted.
Would you have liked more during the actual scan rather than the silence?
I think so, yes. I mean, I think, you know, silence is just, it destroys you, because you're thinking, “My goodness, what are they finding? What are they seeing?” It would have helped for them to have just said, “I'm looking at the heart and I can see this is working OK, but I can see that there may be a problem in this area, but I'd like to continue scanning if you don't mind. I need to concentrate, if you don't mind if I'm just sort of scanning you in silence, and this is what I'm going to be looking for.”
And I think that would have - OK, it would have unnerved me, but I was unnerved anyway, and to sit there or to lie there for 20 minutes not knowing what they're finding, it's quite hard.
And when they were talking amongst themselves afterwards, was that distressing?
That was hard but, you know, it was very quiet, but obviously we could hear because we were in a small room and there were only 4 or 5 of us in there. And obviously they wanted to have that, and it's better that they had that discussion in front of us rather than leave the room because I would have just been beside myself and that would have actually been quite rude.
I couldn't really hear what they were saying, and I couldn't obviously understand because they were talking in medical terms, but it didn't go on for a long time. It was maybe only a couple of minutes of discussion and then they came, you know, straight back to us and said, “We do think we've both, you know, independently we've both come up with the same diagnosis.”
And that's when they started to explain what that might mean, and they were very helpful. The first doctor that scanned me even gave me her mobile number and said, “In the next couple of weeks if you want to talk to me just give me a call”, so they were certainly very open to helping and to communication. |
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She rang to check the CVS (Chorionic Villus Sampling) results, and the receptionist was rude. Next day they were told it was negative for chromosomal conditions.
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Well, we were told that the results would be available within about 3 working days. And I hadn't heard anything, and I was beside myself again with worry, waiting for the telephone to ring. I knew that they would be phoning me with the results and every time the phone rang I jumped. That was probably the worst bit of everything that I've sort of been through.
That was probably the worst period of all, because it did seem to go on for ever, and it went over a weekend. And because I hadn't heard anything I decided to call the hospital, and I phoned the number that I was given, or had been given, and whoever answered the phone just picked up the phone and said, “Hello”.
They didn't say who they were or what department it was. And when I actually explained why I was calling they were actually very rude and dismissive and said, “Well, you won't get the results for a CVS within 3 or 4 days, that's ridiculous. You'll have to wait at least a week”, which was clearly wrong because the next day the phoned with the results.
So there was clearly some lack of knowledge there on the part of the person that was answering the phone, who was actually the receptionist at the hospital, at that particular clinic.
Did you ever mention that to anyone?
I didn't, and actually every time we went to that particular clinic, the same person, who was obviously the receptionist, was actually very off-hand. And they do actively seek constructive criticism. There is something on the wall that says, you know, “Please write to the Director if you have any criticisms to make.” And I always planned to write, and I didn't actually ever get round to doing it, to be perfectly honest.
So it's my own fault for not following that up, but that was a big thing for us, because, you know, here we were turning up the first time, you know, for the CVS and actually feeling very nervous and very worried about what we might be facing, and the last thing you want to see is an unhappy face. I think that's maybe something they need to look at. And again, you know, we should have, we should have followed that up, but, once you've got the news that you need to know, you kind of forget about that bad experience.
So the next day they rang?
They phoned, yes, and they phoned quite late in the evening, actually. So, it was my husband's birthday and by that point we'd given up any sort of hope of hearing that day. We were literally getting ready to go out and the phone rang, and it was one of the midwives who rang with the results and told us that the chromosomes were fine.
And at that point I asked if they would tell me whether the baby was a girl or a boy, and they told me that, so that was nice to know as well. But that was absolutely overwhelming, because that at the end of the day made such a difference to us, to be told that really major decision-making process was going to be taken away from us and everything would be fine. |
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They thought through how they felt about different conditions and whether they would want to continue with the pregnancy. She felt she might not get another chance to have a baby.
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Well, ultimately I probably wanted to discuss it more than my husband did, and I think he's very much the kind of person “Let's make a decision, let's talk about it when we have all the information”, whereas I need to start making that decision early on, I need to have all bases covered.
So we had talked about it in detail, on my instigation I guess, and there were really two scenarios, I suppose, there were - well, three. There was, you know, the fact that the baby might be absolutely fine, in which case obviously we would progress; the fact that the baby might just have something wrong with his heart, in which case we'd pretty much made up our mind that we were going to go ahead, because heart surgery would - I don't think at that point we knew what it would involve - but we knew that it would be surmountable, and it seemed so far away, and we so desperately wanted a baby that it didn't really matter and - “it didn't really matter”, that sounds really dismissive - but, you know, it seemed like a problem we could overcome.
And because of my age and because of our 2 previous miscarriages, when we discussed it, I sort of said to my husband, “This could be our last chance to have a baby so I don't want to” - you know, a heart problem - yes, it's an awful thing but it's not the end of the world, and it can be overcome. So that was where we were with that. And then obviously the third and final scenario was that there was some chromosome problem as well, which was very common with this particular heart defect.
And again within that sort of remit there were various problems. It had been explained to us, you know, it might be that the baby had Down's, or it might be that they had a very serious chromosome problem, which was quite common again with this heart complaint, where the baby would either die before birth, but if it survived the birth itself it would be very badly handicapped and would probably die very soon after birth anyway.
So I think at that point we talked about that scenario and decided that actually we wouldn't be able to go through that, because it's not just us that's affected. It would be awful for us to go through that. You know, having to go through the nine months of pregnancy knowing your baby probably wouldn't survive would be very hard and very stressful, and actually to some degree in our minds pointless, which sounds selfish, but you've got to think about the other people you are putting through that as well. You know, young children in the family, sisters, brothers, parents, friends.
And that it isn't just about you as a couple - it is about so many more people and how they react towards you, and how they, how comfortable or how uncomfortable they feel in talking to you about it.
Did you find that you pretty much agreed on your responses to the different scenarios?
We did, except for the scenario that actually was the scenario that eventually, you know, came to be, and that was where the baby had a heart condition. And I wouldn't say, we didn't disagree, but I was absolutely adamant that I wanted to go ahead with the pregnancy, because I did strongly feel that I may not get another chance to have a baby.
My husband was a little bit more, he wasn't reluctant, but he was a little bit more concerned, he wanted to think it through in more detail, and he wanted to have more information from the doctors. And I think that's perfectly acceptable, you know. He wanted to be armed with all the facts. I just thought, “This is a chance to have a baby, I want a baby. The baby may be ill, but there's a good chance that, you know, it would lead a relatively normal life.”
I guess my husband was probably thinking, “What will we have to go through in terms of surgery? What would the baby have to go through?' So he was probably a little bit more, you know, thoughtful at that, at that particular point.
Did his views change when you actually got the definite diagnosis?
Yes, I mean I think by that point his views had changed anyway, because we'd talked about it and I'd said to him, you know, “Because of my age, I'm 35, there's a good chance, you know, and because of the miscarriages, there's a good chance we may not get another chance like this.” And I think once I'd sort of, or we'd discussed it in that vein, then he realised that, yes, it probably was a, you know, it was the right thing to do. |
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Joining local NCT antenatal classes was generally a positive experience, although occasionally the information did not apply to her.
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Did you go to any antenatal groups or did that not seem appropriate?
I did. Because we later on decided to have the baby at the larger hospital, there was no point in going to my local antenatal group, because the majority of that was sort of taken up with, you know, meeting people at the hospital, having a tour of the hospital and I'd already signed up for NCT antenatal classes, so we decided just to do the NCT classes.
And was it OK taking part in those, with this information that you had about your pregnancy, or did you find it difficult to relate to the other women?
It was absolutely fine. It was a small group of about 6 people and prior to signing up to the class, or when I was signing up to the class, I obviously told the people that the baby had a problem, that I wasn't going to be having the baby in the local hospital, and that the chances are I would have a caesarean, because actually at that point I thought that the baby would be born by caesarean because, just because I wasn't going to be near to where the hospital was, and for other reasons I thought they would, they would choose to go the caesarean route.
So the people in the class were already, or the people taking the class were already aware of the situation, and of course it came out in the class, because we'd be talking about things and it came out I think the first week. And I certainly didn't have a problem relating to other people.
They possibly were all very shocked because they were all having their first babies. I think they found it very hard, and they found us very calm - this is what they've sort of told us since - “You were very calm about it.” But I think they probably felt a little bit uncomfortable, because they probably were feeling extremely sorry for us, given the information that we had.
There were a couple of bits in the classes that were, I suppose, you know, a little - not upsetting, that's too a strong word - but I kind of felt a little bit, you know, “I'm not going to have that situation myself, so I don't really want to discuss it.” Things like maybe when we touched on breast-feeding, I knew my baby would be taken away straight away after birth, I knew there was a good chance of that, I wouldn't have that chance, you know, within the first hour to try to establish feeding, so when we were talking about that I kind of wanted to switch off from it, and ignore it. |
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After a difficult labour, during which the baby's heart stopped, staff eventually agreed to do a caesarean.
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And we had a couple of bad experiences in the middle. I mean, I wasn't coping very well with the pain, but that's, you know, a very subjective experience, because nobody knows the pain I was feeling, and I don't know the pain anybody else is feeling.
So really, nobody can say, “You're not coping.” But the midwife actually spoke to a doctor in front of me, and said, “She's not coping very well with the pain”, which made me feel I was a very bad person. And I'd tried everything. I'd had paracetamol, pethidine, baths, TENS machine, epidural, absolutely everything.
The epidural was fine, but nothing was happening. And after about, I think it was about 7 o'clock the next evening, so I'd been through the whole day in labour, about 7 o'clock they decided to start giving me I think it's Syntocinon [oxytocin], which speeds up the contractions. And it started fine, and then suddenly they decided to increase the dose because it wasn't, again it wasn't working.
You know, the baby was desperately trying to get out and I was still only 2 cms dilated. So they upped the drug, and my husband went off to phone my sister to tell her what was going on, so she could tell everybody. And the baby's heart suddenly stopped beating because he had a massive problem, obviously, with this drug that was I guess speeding up, trying to speed up my contractions, trying to speed up the dilation of the cervix, but the baby clearly reacted badly to this and his heart stopped. And all hell broke loose in the middle of the room, you know, there were people running around all over the place shouting for doctors.
My poor husband was standing at the lift in the hospital making a phone call, and the anaesthetist came and grabbed him and said, “We're going for an emergency caesarean”. So he came rushing into the room. And at this point it had all died down, because they'd stopped the Syntocinon, I'd sat, you know, they'd sat me up in bed, or no, laid me down, got me in the recovery position and the baby's heart had suddenly started to pick up again. Now obviously, the thing I was concerned about was the fact that the baby had a problem with his heart and it had stopped, so those two things combined were a little bit scary.
And I think at that point they'd decided to go for an emergency caesarean, but the baby's heart rate picked up, so they said, “No, we'll let you try for another 4 hours to see if you can get this baby out naturally”. I was actually very excited by the prospect of an emergency caesarean at this point. Anyway, I had an epidural so I'd had a little bit of sleep, but still I was incredibly tired, because it was now Saturday evening and I hadn't slept since Thursday night.
And I did ask several times if I could have a caesarean, you know, would they consider it? And I kept being told, “Well, we think we should try for another 4 hours. We don't give caesareans based on family history. It's much better for you to have this baby naturally, so let's keep going”. And at that point, I was quite happy to do so because the epidural was working quite well.
Then suddenly it stopped working and the pump on the epidural box failed, and an anaesthetist came up to try and fix it, and said it was working absolutely fine and he left. And I was still in absolute agony, and I kept saying to the midwife, “Can you please do something about this? I'm in absolute agony”, you know, my hips felt like someone was dislocating them.
You probably don't really want this on your tape, it's putting people off having babies. But eventually some, another anaesthetist, a more senior anaesthetist came up and said, “I'm not surprised you're in agony because this epidural pump is completely broken and it clearly hasn't been working for a few hours.” And she said “I'll fix it for you”, by which point I'd just had enough. It was now 3 o'clock on Sunday morning and I said, “I'm sorry, I cannot wait any more. I'm not prepared to try another 4 hours. I want you to give me a caesarean at this point”. And they did eventually come back, and the doctor sort of came in and examined me and said, “OK, we'll give you a caesarean”. |
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It was very traumatic to hand over their son for heart surgery, but now his heart problem is corrected he can have a normal life.
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He had the surgery in September, beginning of September.
Right. And what was it like, having all of that done?
Traumatic, beyond belief. I mean, you know, probably, I don't know if I'm denial, but probably if I look back it was not as bad as I though it would be. Although in some respects it was much, much worse than you could imagine. Because it's not the natural thing to do, to hand your baby over to somebody to, you know, open up their chest, and do something which ultimately would be lifesaving but actually at the time was life-threatening.
Because they said he, if they didn't actually operate he would live until probably 40, and lead a reasonably good life. So certainly for the next few years he would have been absolutely fine. He might have been small, slow to put on weight, but, you know, effectively, this surgery was, you know, extremely life threatening.
I mean, it is risky. And you almost, or we almost felt like we were putting him through something that maybe he didn't need to go through. Although, ultimately, he would have needed to have gone through it, and it's much better to do it when they're a baby.
But it was, you know, very harrowing. But still, you just need to look around you to realise there are people in much worse situations than yourself. And to them it was a very routine operation, and although the surgeon did come out of the operation and say, “The hole was very big”, really, you know, it was very straightforward for them, the surgery itself, and it was a success.
And they now feel that that's it, do they?
Yes, it is. He won't need any further surgery, touch wood. I mean, they're pretty certain that that's it. He's had his follow-up appointment. He's been given the all clear, so there's no reason why he would ever need anything else. He will need to have antibiotics if he has any surgery or any dental treatment, just to prevent endocarditis, I think it is, and he'll have to have check-ups for the rest of his life, but that's not a bad thing.
He should start to, he's small for his age, but he should start to pick up. There's nothing, there's certainly nothing in the anatomy of the heart that makes them think that he won't, you know, continue to grow and be the size that he should be ordinarily. |
