Father’I mean, they had, at the end of the labour suite they had another room set aside that was quite nicely decorated and it had a proper bed in it and a cot and a television. And something I hadn’t realised, they actually invited me to stay that night and I stayed in the hospital that night with my baby and my wife, and that was very good. That was very important. I mean, they made a camera available to us.

Mother’They did his hand and footprints.

Father’Yeah, they took his hand and footprints onto a piece of card.

Mother’A lock of his hair.

Father’A lock of his hair. They did like a little keepsake book. And we were going through all this and the midwives were all very good and we realised, we – it suddenly hit us, with all the photographs and everything that wed done, and we looked at our watches and we realised it was quarter past one in the morning. We thought, you know, ‘Where on earth has the time gone?’ But we had that time in this sort of little, almost like a little hotel really, wasn’t it?

Mother’Yeah.

Father’I’ve stayed in worse hotel rooms.

Mother’Yeah. We carried our baby out the next day.

Father’Yeah.

Mother’And took him —

Father’Just as —

Mother’– home in the car.

Father’Yeah, just as everybody else who’d given birth on that labour ward had done. And that was good, it was very dignified. But people came to us. I mean, we made some outrageous requests, or what we thought were outrageous requests and they just turned up. You know, stuff happened. And that was absolutely fantastic. That, you know, they all knew what we were going through, and they knew that things were going to be very difficult for us, so they tried to make it as easy as they could.

Mother’And I’ve kept all the clothes that he wore. He had a lovely smell, that lovely newborn baby smell, which is still here with us. Then he was dressed separately to rest him. But I’ve got all his clothes, all the things that I made for him, because if hed have gone into the special care baby unit I didn’t want blankets and that that they’d provided. I wanted all my own stuff that I could bring home, which was important.

They’re your keepsakes. They’re your baby. Although I haven’t got my baby, I do have the clothes that he wore, and that’s the best thing I’ll ever get, so treasure them. Mine haven’t been washed. They’ve still got his scent on, and they’re not going anywhere, they’re at home with me.

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.

Father’Unfortunately there are no certainties in it because —

Mother’There was no certainties, you know. Nobody knew how long he would live, whether I would make full term, you know, at 20 weeks they said, ‘Oh, you know, if you make 24 weeks, you know, you’ll be classed as a stillborn baby. And I made 24 weeks and it was very much of a thing where every week I was counting, that that was another week further ahead.

Father’That’s right. Every day really that we got through, I mean, we would sort of go to bed of an evening and wed turn to each other and say, ‘That’s another, were another day closer.

Mother’It was, you know, it was very much, you know, because we didn’t know how long he would stay there for, and obviously the longer he stayed there the better chances hed have had.

Father’Yeah. And there are a lot of, I mean, there are children who survive two, three, four, five, six years with trisomy 13. The quality of life question is quite a big one. People, you know, weve had people come to us and say, ‘Oh, yes, but what quality of life is he going to have?’

Mother’Hed have had his own world.

Father’I think if that’s, you know, if that’s the life that you’ve got, then that is of quality, to us.

Mother’We would have done everything —

Father’Yeah.

Mother’ — to have made his life and stimulated him despite all his problems.

Father’The whole thing, really from – I mean, we spoke about this, we went over to the local specialist centre, where we were sort of, they performed the amniocentesis, and the whole thing about it has been giving him absolutely the best chance that we could.

It’s also for our sake. You know, we were given our diagnosis in September and the baby was due around Christmas time. Now with the two older boys as well, we sat and we thought and we talked about this, and it’s, ‘Well, you know, is it going to be fair on the boys? Is, are they always going to associate Christmas with losing their brother or having a very profoundly disabled brother? How are we going to cope over the next four months?’

And very, very early on we made a decision, or we formed the opinion that the decision we made wasn’t what was best for the next four months. It wasn’t what was best for the next four years. It wasn’t what was best for, to an extent, what was going to be best for our two older boys.

We knew that we were going to have to look ourselves in the eye in ten, twenty, thirty, forty years’ time and be able to say to each other, ‘We gave our son the absolute best chance that we could. And that’s really why I don’t think wed do anything differently. It’s been hard. It’s been – I knew at the start of this, I mean, I went off and read up and looked on the internet and all the various websites.

We knew very, very early on after diagnosis that there wasn’t going to be a happy ending here. What there could be was a slightly less bad ending. We had to try to salvage something from what was a very, very bad situation.

Mother’And we sat down and we talked, and we lay up in bed for hours trying to get our heads round the whole thing. And I think wed basically both come to the same conclusion, that we wanted to carry on. And I think that was the first time I’d slept then for like a couple of weeks. And we woke up in the morning, I felt as if a big weight had been lifted off my head. I felt it was all gone and…

Father’Just because I think we knew the direction we wanted to go in.

Mother’I felt very mixed up and very confused about what to do for the best, and once wed made up our minds, that was it. ‘I’ve made up my mind and I was going to carry on.

Father’Yeah.

Mother’Some of the decisions later I do feel that the decision we made at the time was very easy. I felt sometimes as if we never really made a decision, we just waited for nature to take its course.

Father’Decided wed let fate sort it out for us, abdicate the decision.

Mother’Where I think I would have always felt, ‘Oh, but what if? What if they were wrong?’ or ‘What sort of quality of life?’ or, you know, ‘He could have lived, he could have had this, he could have . . .. Yeah, and I would never, ever have known, and I needed to know. I don’t feel very, you know, heroic about carrying on. It was, I felt as if it was the right thing for us to do.

Father’Yeah.

Mother’It wasn’t about proving that we could do this.

Father’No.

Mother’It was about what was right for us.

Father’Yeah.

Mother’Not what was right for everybody else or what was simple or…

Father’I mean, anybody else who’s reading this or watching this in this position, who decides to opt for a termination, if that’s what’s right for them, then, you know, great. You know, you have to cope with these things —

Mother’Yeah, you’ve got to be able to live with yourself.

Father’– how you’re going to do it. I mean, it’s, really it’s, it’s quite vicious because you’ve got two stages of grieving. We had, we grieved for our baby when he was born and died so quickly, but also in September when we were diagnosed we had to grieve for the baby that we thought we were going to have.

We had three months of having to get used to the idea that he wasn’t going to see his first day at school, you know, I wasn’t going to take him to see football matches or motor races or whatever. And that’s, you have to allow yourself to grieve for that as well. It’s, and it is very, very difficult.

Mother’Another thing that was very good for me was, through the last few weeks of your pregnancy you usually get offered the relaxation classes and —

Father’Having to go to breathing exercises and —

Mother’– and I couldn’t face all that. Even though I’d had two children, I still, you know, it’s still quite an emotional time —

Father’Yeah.

Mother’– to have a baby and I’d still got to go through a whole labour.

Father’Yeah, we knew there was going to be a full labour, with all the breathing exercises and the when to push and the when not to push.

Mother’And they organised me to have some private massage–

Father’Yeah, massage and relaxation.

Mother’– relaxation at [local hospital].

Father’Again, just so we weren’t in a room with thirty other expectant couples watching videos about breastfeeding that really weren’t going to be relevant to us. The people at the local hospital and the fetal health unit were without exception absolutely fantastic.

Mother’The consultant was very good.

Father’Yeah. I mean, the consultant had a very difficult job to do because he had to make sure – and a couple of times he brought us down to earth – he had to make sure we weren’t in denial about the situation.

Mother’Because as far as I was concerned, my community midwife was coming out, most weeks she came out and she supported me.

Father’Finding a good strong heartbeat and —

Mother’She, yeah, she came out, listened to his heartbeat. It was good, it was strong. I was having regular scans, he was growing, he was getting bigger, hed got this – and I was thinking, you know, he hadn’t got one of the major problems with his brain, because he hadn’t got holoprosencephaly [brain malformation]. And I kept saying, ‘Well, if he hasn’t got holoprosencephaly, he can make this and he can go through this. Yes, he will have his problems but he can . . .. And unfortunately he didn’t.

Father’Of course, at the end he couldn’t. Because you don’t know what the problems are. But I mean, we spoke at length to the consultant about, as we were saying, decisions about whether to have a Caesarean section, what levels of intervention to have, because of the prognosis for the baby, and the effects on [wife].

And it’s, you know, he was saying ‘When are you due for a scan again?’ At that point we were being scanned every five days, really. And he said, ‘Well, you know, is there really any value in this? Is it helping?’ And I’ll be honest, by that point we weren’t looking upon it as being a scan to find more problems. We were just looking on it as quality time with our son. We could see our little boy up there on the screen, and we knew we were going to have a very limited chance to do that.

Mother’Embed