Parents of children with congenital heart disease

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.

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.
 

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.... 
 

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.