Father’One of the fortunate things to come out of the pre-screening and the diagnosis is, you know, everybody, they tried to make a birth plan. Hospitals are quite keen that everybody goes in now with a birth plan and we were, we knew we were going to have a very special birth and so we could tailor not only the birth plan, but we could also tailor the aftercare plan as well.

Because we knew that it was possible wed only have a few minutes with [son]. It was possible hed be stillborn. As it turns out we did only have a few minutes. What we really didn’t want, if that’s all the time that he had, we wanted him to retain some dignity. As it turns out, taking him from us, rushing him away, and putting him onto a ventilator would have made absolutely no difference at all. So during those few minutes that he had–

Mother’He stayed completely with us.

Father’Yeah, he was with us in the room all the time. They just gave him a little whiff of oxygen, a little bit of chest massage, and then it became obvious that, you know, his breathing was just dying away and his heartbeat was just fading away.

Mother’But he did not suffer.

Father’But, and then they passed him back to us, and from then on he was our baby. And he wasn’t poked, prodded, there was no invasive testing done on him.

Mother’No.

Father’He, all he ever knew was love and dignity, and that was very important to us.

I mean, you know, if theres one interesting thing that’s come out of this you think that the technology that they can pick these things up is just amazing, and I think we feel like very lucky that that’s been the case and weve been able, that they’ve picked it up so early at the sort of, you know, I suppose the tenth week of the pregnancy.

So, that has helped us. We got used to the idea that there was a problem. And I think you talk about antenatal screening, but a lot of parents don’t find things like this out until the baby is born and the baby goes blue or something after birth. So we were very lucky because, in the loosest form of the word, but we were lucky because we knew for a long time. We had a lot of time to get used to it.

You said you’re very grateful that you found out, so presumably next time, if theres a next time, would you make all the same screening decisions or is there anything you’d do differently?

I don’t think so. I think were probably now a special case because of what’s happened to us before, so well come into the next time, having, not having to look so much stuff up. I think, I don’t think wed have changed any of the decisions we made. You know, we came to those decisions with all the facts at our finger tips, and I don’t think we made a wrong decision, because weve got a wonderful son now out of it.

But we, I don’t know, I just don’t think we wouldve done. I think that knowledge to be able to make those decisions stood us in good stead and I just don’t think wed do anything differently. Maybe I’d encourage, you know, if there were another, a fetal scan, a cardio scan, that I would, I’d maybe ask them to expand a bit more.

You know, I wouldn’t feel as intimidated maybe as you do when you go up to a big hospital in London about asking questions. So you know, I would certainly go in there with a attitude “I’d like to know this, this and this,” and I think doctors respect that honesty.

If you’d found out at the twenty-week scan, what would you have thought then about termination?

I don’t really know. I suppose I would have thought long and hard about it, because I’d been through so much with [daughter] when I was pregnant. I was bleeding heavily and I used to have constant pains and different things, but she was still there as such, so that’s why I carried on with the pregnancy and I had her.

I don’t know how things would have been if wed have found out. I suppose in one way I would have carried on having her, but at least it would have given me more time to get used to the idea and been able to prepare myself. Whereas I only had one week to prepare myself, from finding out to having her. And as soon as I had her she was rushed away to Intensive Care on oxygen and different things, and I couldn’t see her for another two days after that, but I don’t know.

How do you feel about screening now, looking back?

I don’t trust it at all. Years ago they never used to screen pregnant ladies. I don’t trust it at all now. That’s like the only thing you’ve got, trust and safeguard you’ve got, while you’re pregnant. All pregnant mums worry anyway, but that’s, that’s like the bit of, that’s what puts your mind at rest until you’ve had your baby.

And I just think that pregnant ladies should be scanned more, they should be scanned more. And, you know, how sometimes they miss things that they’re supposed to be looking for, the major things of, like, of a heart or of a brain or something, and they miss it.

That’s interesting. So even though you don’t trust it, I mean, it kind of gave you false reassurance?

It gave me, yeah. I just, it gave me false reassurance, because I had a very bad, a very bad story to tell, really, due to screening. But I just don’t think anyway that pregnant ladies are screened enough. They have about three scans from when they find out that they’re pregnant to before they give birth, and a lot can happen in them months – the last time they’re scanned and from when they give birth a lot can happen. And I just think that pregnant women should be screened more. If they want to be screened more, I think it should be there for them to be screened more.

Would you yourself have screening again?

I would have screening again, but I’d want screening a lot more, if that’s possible. Because I had about ten scans altogether, which is very lucky, but that’s – I’ve lost hope in it for the moment, screening. I probably have done altogether, but that’s the only, that’s the only thing you’ve got, until you give birth. But I would have it.

But with a heavy heart?

But I would, I don’t think I’d trust it again. I’d have the screening done, but in the back of my mind it’s always going to be there now – ‘Is there something wrong?’ I’m always going to be worrying until I’ve actually given birth, until I can see for myself, because until then I just wouldn’t trust it. It’d just always be in the back of my mind, ‘What if?’ all the time. Which that should really be there to stop pregnant women worrying, but it wouldn’t stop me worrying, at all.

I mean, that’s one of the things that happened with my son. They said, oh, he had a pulmonary stenosis and a VSD [ventricular septal defect]. And when they actually, he was born and they did an echo on him once he was born, it was, the VSDs were far more severe than they actually picked up in the scan.

He had two very large ones that covered pretty much most of his heart. So yeah, I mean, they can’t always tell, but then in some cases they, they can tell, and they do, they do get it right. But I don’t think in our case, if they’d have told – maybe if they’d have said to us, well, it’s far more severe than it actually was – I mean, that’s the worry – then we may have made a different decision. That, I mean, obviously I’ve never thought of that. That is, that is the worry. But I think, I think it is good to be screened and to have the choice, and be able to make the decision.

I mean weve spoke about it quite a lot since weve had our son – what would we do if we found out we had, we were pregnant again and we had another heart baby. Because of everything our son has been through, would we be able to do it again? So we have spoken about it since then, but we never really did at the time.

And do you think you’ve come to a conclusion about what you would do another time?

Well, pretty much. We said that if – I mean, I said after my son was born that I’d never had another child anyway. But when I, now that I’m pregnant again and I did, we have said – well, I’ve said that if it was another heart baby, or had anything wrong, that I would want to terminate, and my husband has basically said he would support me whatever I wanted to do.

And what are the factors affecting your thinking?

Basically because, although my son has been through more than you would wish on anyone, but hes through it, hes out the other side, and we can now see the light at the end of the tunnel. Because hes been through all of that, it is mainly my son. I wouldn’t want him – he gets so distressed with going to the hospital for check-up appointments, and he does go regularly. And he absolutely hates it, and I would hate him to feel like that about a brother or a sister that hes – about his brother or sister, to see them go through that.

Not so much about how me and my husband feel about it, because – I mean, I’m not saying that the last four years haven’t been the most torturous of my life, but they’ve also been the best of my life. So – and it’s been hard, but you, you do it. People say, ‘Oh, well, how..? God, I don’t know how you’ve coped, you’re so strong. But you do it. I mean, and I’m sure that every single person that I know would, if they were in the same position, would do the same thing.

But I don’t think that I would want my son to go through any sort of – maybe it’s selfish. Maybe it is selfish to feel like that, because they are so resilient. But I would hate him to suffer, and I’d hate another child to suffer the way that I feel that he has.

That was one of the questions we asked ourselves’ ‘If we knew what we know now, would we have carried on with our son, with our first son?’ And although weve said, ‘Yes, we would have done, again, weve said we don’t know if we could do it again. It’s very difficult to look back, and see the problems hes gone through, but also to see the end product and think, for one minute, that you wouldn’t have wanted him. That’s the hardest thing. Although it’s, it’s been awful, it’s also been wondrous.