She had a post mortem, and again we were given quite detailed medical information about what had been wrong. And that was quite an important process because, the post mortem confirmed all of the things that had been wrong, and enabled the medical people to be able to say, she wouldn’t have survived, with all of these issues she wouldn’t have survived.

And obviously, that made us feel relieved that wed made the right decision. It would have been terrible to hear in the post-mortem that she had a kidney infection but that would have been fine and there was nothing else wrong with her. I mean obviously we believed that all these things were wrong, but it was good to have it in writing that they’d discovered all these things.

One of the other things that, that I haven’t mentioned was when the post-mortem results came back, because, obviously, we gave permission for the post-mortem because I wanted… if, you know, if they can do research and, and either help find a cure or some kind of, you know, way of, other way of dealing with this hypoplastic left heart then that’s great.

It actually turned out that not only had she got the hypoplastic left heart and the problems with the, I think it was the arteries, there were also some cysts on the base of her skull that hadn’t been picked up. I suppose because they were so concentrating on the heart once they’d spotted that. And also, we found out she was carrying a chromosome disorder called balanced chromosomal translocation, which, apparently, is an inherited condition.

So then we were all sent for tests, and it turns out that I carry it. That is nothing to do with the heart condition. However, if you have a pregnancy and you’re a carrier, there are four scenarios – miscarriage, a child that’s born a carrier but is perfectly normal, like myself, a child that is born with no, does not carry, or a child that has such a severe, profound physical and mental problems, they very rarely survive to term. Those that survive to term will, probably only 1% will go, will survive the labour, and of that 1% only another 1% will make it to the first year. And it’s called Patau’s syndrome. So that was then thrown up that I was a carrier of this chromosome, so then it was where had I had it from?

So my parents were tested and my Mother: s a carrier. So all this has gone on for years with nobody knowing. My sister’s not a carrier, thank goodness, and my aunties not a carrier, and my brother’s not a carrier, so there was just me and my Mum. Now, we know for a fact that my maternal grandmother had many, many miscarriages, but she was already deceased by the time we found out so there was nothing she could do about it.

But they now think that it may be that it was inherited from my maternal grandmother. The complications around this, was the fact that when I get pregnant again, not only have I got the chance of a slight recurrence of a heart condition, we now have to look at the issues surrounding me being a carrier and the life of a child I’d be carrying would be a) would I miscarry or would I have a child with this very severe condition? So that then is a whole new ball game, a whole new ball game.

We had the post-mortem results, and although they weren’t 100 per cent definite, they said that my husband and I both have a recessive gene, that were very unlucky to have met up [laughs] because had we married other partners this would be irrelevant. But because 1 in 4 of our babies will inherit two dud genes – one from each of us – they will have, they will be unable to process some kind of enzyme which causes all these problems with development in the womb, and means that the majority of babies with this syndrome, which is lethal multiple pterygium syndrome, die somewhere in pregnancy, usually in the middle trimester.

So I was quite reassured by that, because the baby would have died very soon after wed had the termination anyway. So I hadn’t terminated a potential baby at all, it never had a chance. So in a way that was reassuring.

We knew that we had a… three-quarters chance of having a healthy baby each time, and so I thought, ‘Well, if we just keep having them, we will get there in the end. And terminate the ones that have this problem early, instead of going through all that long palaver, because if theres the slightest problem on the first scan well think, ‘This is it, finish here, start the next. And we can have as many babies as we want if we just keep going.

And again, this might be difficult for people to hear but you know, the bits of the baby going in different directions to look at all these different things that this Walker Warburg syndrome constitutes, because they couldn’t look at all in the hospital where this baby was being born, so bits were going to be sent to Holland and London and all sorts of things, so

But you know, again, I just kind of marshalled that like a military campaign, making sure, ‘Now let me read the forms, have you got’?’ You know, I can remember sort of saying, the midwife being – finding it all a bit difficult – because I was saying, ‘Now the eyes have got to go here, and the brain’s got to go here,’ you know, and saying, ‘They’ve got to get a muscle biopsy within an hour of the birth, do they know this?’

And, you know, so it kind of, strange as, at a level I was much more in the moment with this is a real baby, let me see it, let me name it, but on the other hand I was also being incredibly clinical about getting everything sorted with the post-mortem.

But my husband was the same, we again, throughout this whole two years what’s been helpful for us is that weve always seemed to have been in the same place at the same time, which I think helps. I think it would have been harder if we weren’t, I think, and we were strong at the same times and we broke down at the same times and, which some people might find that harder because you can’t be there for each other because you’re both blubbing at the same time or you’re both sort of marshalling the troops at the same time. But that’s just how it played out for us and it seemed to be okay.

Why did you kind of get [so] involved with the post-mortem? And why, I mean most parents don’t and it’s left to the hospital?

I know, I think because you know, I knew more about this than anybody else in the hospital, and nobody really knew about this condition and knew about all these different things. And I was just, my biggest worry was that wed lose a second baby and still not know why, because this whole diagnosis seemed to be back up in the air again. And my biggest concern was, was knowing that it was, what it was, it was all about the future. Was it 1 in 4 or was an inevitability; every pregnancy would have this? So I just needed to know and I just felt I couldn’t, that everybody else was incompetent around me really.

And there were various things, when I was waiting to go in the second time they cancelled me twice, once because there were no beds and twice because they hadn’t put my name in the book. And then, on the day, there weren’t any beds again because I hadn’t had my name in the book. And so I had a few concrete reasons to believe that the world was incompetent [laughs].

I don’t know, maybe it’s just me, I’m a bit bossy and a bit of an organiser, I just sort of, and maybe again, a bit of the inner me, perhaps that’s what I needed to do to cope with it, was to get practical.

I think it was something wed talked about before we even knew the result actually, or maybe in the intervening 2 hours before, when we had the result saying that the baby did have trisomy 18 and after that, 2 hours later we had the appointment with the consultant and I’m sure we discussed it then;

And my husband has a science background so, I mean, hes very much for it and, and I do too. I mean, I don’t have a science background but I kind of think in these rare conditions that the only way people are ever going to find out more about them is if, when they come along, they’ve got some material to, to research. No, it’s not a nice thought and theres been all this stuff in the press about the babies being used for post-mortems without their parents consent. But in our case we saw it as a positive. I mean, she was dead, nothing was going to change that so we saw it as an opportunity for something positive to come out of it research-wise;

So, I think, because I think we actually said at the at that meeting with the consultant before I began the termination, that wed like, if there was any research, valuable research, to be gained then we wouldn’t mind a post-mortem being done. I think, I’m pretty sure they must have checked that after the birth as well though, but I can’t remember;

And I mean, you know we gave permission for any of the tests that they wished to carry out. Because I’m sure you can, we were given the option, you don’t have to have a post mortem, and you can opt for less invasive post mortems, they can do, but we just said ‘Anything you can find out wed like to know.

And was it after that, you had the funeral service?

The, one of the distressing parts of it was the fact that it took so long for the funeral service because she had a post mortem, and she had to have the post mortem at the big hospital, and then obviously come back. And it seemed to take forever. I think it was probably about two and a half months between giving birth and the funeral.

They just, we just seemed to be in limbo for all that time. You couldn’t move on, put a full stop, knowing that you’ll have to go to your baby’s funeral, was just, we couldn’t put it behind us until after that event.

So we went back in and the consultant, he went through the report, which had been written by a pathologist. Basically everything was fine, and it was just the brain area that was the problem. It was saying there was hydrocephalus, the fluid on the brain, and it, the actual, it, it s-, actually said cause of death is that hydrocephalus as a result of Arnold Chiari malformation, which was the actual condition that the baby had at the end of the day.

I felt that I needed a copy of the report so that I myself could go through it in my own time. While I was actually there I did feel quite angry, because there was one comment at the end of it saying that some of the samples had not been kept for further research. Because wed stated that we wanted any tissue samples returning back to the body before cremation or burial, and that they couldn’t release the body until the tissue was returned. I’d never stated or been asked at any time, you know, was it a problem delaying the cremation?

I just felt the way it had been worded it was as though they hadn’t finished fact-finding, but nobody had given us the opportunity to delay anything. So whether or not anything else would have been discovered I don’t know, but, I think the worst had been discovered. But it was just the wording of the post-mortem report that had doubt in my mind as, was there anything else they could have found there would have been a problem with? It’s one of those things that just niggles at you.