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Parents of children with congenital heart disease

Scans, tests & decisions during pregnancy

Congenital heart disease in a baby can sometimes be detected during pregnancy when the mother has an ultrasound scan (usually at the 20 week scan). Mothers were first told that something might be wrong with their baby's heart during their normal antenatal scan, but another more detailed scan was required to find out more about the congenital heart defect. Some mothers had several more detailed scans to try to identify the type of defect (see Interview 06). In many cases the exact nature of the heart defects remained uncertain until after the baby was born and could be investigated further.

Mothers who become aware while having a scan that the doctors suspect there is something wrong can be very distressed. One explains that the way the cardiologist told her about the results of the scan helped her.

 

Describes the positive way the cardiologist handled communicating the results of her scan during...

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I think that the one that stands out was the fetal cardiologist who made the diagnosis really in that she, she very quickly clearly knew exactly what the problem was and she stopped and she, you know, she stopped and she talked to me and I cried and, you know, she comforted me and we, we had that conversation and she said 'I need to, I have stopped now because I know that there's something really, you know, it is very serious and she, and she is likely to have an, need an operation and it is a significant heart problem. And I need to do a lot more, you know, the echo and to do a lot more but, I know that you're going to be worried because you're going to see me doing it. It's really important for me to talk to you at this stage before I do all that'. And that was so right, you know. And I've not seen that sort of thing before. I'd seen other situations where people have just gone on doing the investigation until the end before they've talked and parents have been terrified. So that, that was a really good way of doing it and, you know, she was very, very sensitive in the way that she handled it.

Around half of all children with Down's syndrome have congenital heart disease (NHS Choices 2018). Parents whose baby has been shown to have a congenital heart problem on a scan will be offered the option during pregnancy to have an amniocentesis to find out if their baby also has Down's Syndrome or any other chromosomal disorders. One mother chose to have this test so that she could be prepared for the outcome. Another who was carrying twins chose not to, because of the risk to the healthy baby.

 

Explains why they decided to have an amniocentesis and the positive benefits of it.

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I mean the decision for the amniocentesis we thought that it was important to know exactly what she, well we were facing and she was facing really. And we thought that it would be really, we didn't know what we, you know, what, what we'd do depending the outcome but certainly we, we felt it was really important to know because we thought, well I thought in particular, I would find the whole pregnancy really, really hard and just, I would be really emotional and upset the whole pregnancy not knowing and the labour in particular would be awful because I would just not know. And I know with me it, for how I am, I'm always better if I know the facts than if I just imagining the worst. And so although it meant a procedure that had a risk to it that other, other people might've said  it was unnecessary, you could have just waited until you had the baby, but I, we needed to know and, and I felt so much better knowing that we would have an answer really. But that wouldn't be right for everyone and I appreciate that. A lot of people would feel that, you know, they wouldn't, they would rather just, you know, just live with that anxiety whatever but that's not how, how I am really.

And actually one very positive benefit from that was I then knew the baby's sex and I knew she was a girl and that was really important because I was just fixing on this baby with a problem, the baby with a heart problem who was going to need treatment and didn't know how serious it was going to be. And to actually know that it was a girl, I wouldn't have minded knowing it was a boy either, but suddenly somehow to know that I, I knew, I could really, really bond with her and it just felt very different. It felt much more sort of human and much more real really.

After discovery of their baby's heart condition, parents were given an appointment with the cardiologist to discuss their options. Some decide to terminate the pregnancy when they receive a diagnosis, others opt for withholding treatment allowing their baby to die naturally after birth (see our site on Ending a pregnancy due to fetal abnormality for more experiences).

The parents we interviewed had all opted to proceed with the pregnancy, and chose to consent to surgery if it was needed.

 
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Explain that they chose to proceed with the pregnancy and opt for surgery because they would not...

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OK well I found out that I was pregnant in August 2001 and I had my scan, my first scan at 5 months pregnant and they detected twins. Three weeks later I went back for a more detailed scan and they did a scan of the heart and that's when they picked up that one of the twins had a heart defect. So they got me to, an appointment to a hospital nearby and I had to go there the next day and I was basically given three options. They wanted me to have an amniocentesis but obviously with it being twins there's 50% chance of risk and I didn't want to take that chance so we said 'No' to an amniocentesis and we were sent home for the weekend with options. One was to abort, one was to carry on and let the baby, let the poorly twin die and have no surgery or the third option was to go through with it all and have surgery and that's what we decided to do.

How did you make those decisions? They're very hard decisions to make.

They were, yes but I wouldn't have aborted anyway. It was, I would have, I wanted to give, give it the best chance I had. I would rather have gone through the pregnancy and had surgery. That's just the way I am and my husband, we both agreed on that.

Quality of life was a key factor in forming many parents' decisions. Their religious convictions made some unwilling to consider termination.

 

Explain that quality of life was an important factor in their decision to proceed with her...

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Age at interview: 7
Sex: Male
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And so really we were, we were just totally devastated and our first thought was that that would be the end of it, we'd have to have a termination, we wouldn't be able to carry on with the pregnancy. After that afternoon we went back to, for another scan and to see the paediatric cardiologist of the hospital who is a wonderful man. He explained to us as much as he could see, he did a scan and then he explained, as far as he could what he could see was wrong with the baby's heart and possibly other associated conditions with, problems that there could be with the heart which he couldn't see at that stage. But he gave us the whole scenario and also the worst-case scenario which as it turned out was the case for the baby. But he also explained that the surgical intervention they could do, what they would probably do at different stages throughout his life and he also explained to us the quality of life that our baby could expect to have. And that was very important to us because at that stage you are faced with the decision, 'Do you continue with the pregnancy or do you, do you terminate?'

And my husband and I both felt that if our baby had a good chance of having a reasonably good quality of life, a normal life then we really had no choice. We continued with the pregnancy. Which is what we did.
 

One mother said it was a very hard decision to make because having a termination would have involved giving birth to her baby. Another couple said it had been a difficult decision because they were being told that there was a chance that their baby might be able to have corrective surgery. One mother explains that she learnt the sex of her baby through her amniocentesis and then looked at her pregnancy differently (see Interview 12).

 

It was difficult during pregnancy for the doctors to give them a complete diagnosis of their baby...

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I think the biggest thing for us was that every time we went to the hospital we was told well this is what we think is wrong.  Which I know must be very, very difficult because at the end of the day their scanning your baby through your tummy and it's very hard. And they told us what they thought was wrong. But unfortunately for our daughter that she couldn't have corrective surgery, our surgeon, her heart it just had to be palliated. But they still said to us, "Well we think this is the problem but you know we may be slightly not quite right and when she's born we may be able to correct her heart depending on how certain things are". So when we was given the option of termination that was always in the back of our minds. Well how could we consider terminating a baby when the baby could have corrective heart surgery and everything could be fine so we found that really, really hard.

So when they said to us well come back in four weeks and we may be able to tell you more when the baby's bigger. And you can always still decide to go down the termination route. Which I think deep down we would never have gone down that route.... 

Another couple whose baby was diagnosed with a serious heart condition at 32 weeks said that they had felt offended, that when they had sought a second opinion on the best treatment options they were offered the option of termination. Another mother who was having twins explains how she made the decision to proceed with the pregnancy.

 

A mother of twins describes how she decided to continue with her pregnancy when she was told one...

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Age at interview: 3
Sex: Male
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Well, I think various things. With the complete termination; a big factor for the decision was the fact that I was quite heavily pregnant by then and it was going to be quite traumatic because I would've had to actually have given birth to the babies and I think the thought of that, was just too much, I really don't think I could of gone thorough with that. The selective termination, there was such a high well, I think, statistically it was about a 15- 20% risk of a miscarriage, and I felt that that was too high risk.  

And also the fact because I was having twins and there was a baby there that was perfectly healthy was a big factor as well.  And, I thought, well, yes, they're telling me that I have a child here that has a major problem, but I also have a child here that is perfectly healthy, nothing wrong with him at all.

And when I spoke to consultants and the specialist nurses and so on, and their feeling was there was no risk to the healthy child if I continued with the pregnancy and they didn't feel also that there was any risk to me if continued with the pregnancy.  

And my thought was really was that they've come this far and I feel that I ought to give them a chance. Ad it's up to them and I am a bit of a believer that sort of mother nature will take its course and I felt that if they weren't meant to be then I would've had a miscarriage. I'm not a religious person at all but I just do believe that, if something's not meant to be, then it won't happen. And I think, the fact that I had a healthy child there. The fact that I would've had to go through a pretty dreadful birth and I just felt, I ought to give them that chance. And if once they were born, if he didn't survive, then at least he'd been a chance to fight for life. And, I think that's what gave, made me decide that really, that, he deserved the chance, and really I suppose I just said, 'well it's up to you, boy. You try, you do what you think now.  

Looking back, whether that was, I mean obviously for me it was totally the right decision because he's doing so well. 


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Last reviewed July 2018.

Last updated July 2018.

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