Ending a pregnancy for fetal abnormality

Deciding whether to have a post-mortem

Parents will usually be advised by a doctor about whether they should consider a post mortem for the baby. If parents decide to go ahead, the baby will be examined soon after his/her death (ideally within 72 hours), the baby's body is usually returned within 2 weeks. The aim of a post mortem is to try to pinpoint exactly what was wrong with the baby and find out the extent of his/her problems. In many cases a post mortem will confirm the baby's original diagnosis, but it can uncover other more serious problems.

If parents decide that they wish the baby to have a post mortem, the mother has to give signed consent. Understandably some women found it upsetting being expected to make yet another decision about the baby at such a difficult time, but others had no doubts at all about the procedure because they wanted to know if the baby had a condition that could recur in future pregnancies. One woman felt it was her 'responsibility' to have a post mortem to find out the truth about her baby's condition.

Results from her baby's post mortem showed the baby wouldn't have survived for long and so she...

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Age at interview: 38

Sex: Female

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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 we'd 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.

When the post mortem confirmed the baby's problems, most parents said they felt relieved - as one woman explained, 'you do sort of niggle, especially before the post mortem comes back, what if they were wrong?' Some parents whose babies were found to have more serious problems than first thought, felt the decision to end the pregnancy was justified.

She wanted her baby to have a post mortem to help find a cure for hypoplastic left heart syndrome.

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Age at interview: 33

Sex: Female

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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 auntie's 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.

Occasionally when parents had decided to end the pregnancy because they were advised by doctors that the baby was likely to have certain problems, the post mortem could reveal that the baby was not as badly affected as expected - when this happened parents could feel profound guilt.

She found it difficult to accept that the post mortem found no reason why her membranes had broken.

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Age at interview: 34

Sex: Female

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The post-mortem revealed nothing. It revealed, it revealed nothing negative. It revealed everything positive, which at that stage, it makes it even harder. It's very hard to again, it's easier to live with the decision if you can find at an outcome and a reason for it.

We were informed, before making the decision, that there was every likelihood that we'd never find a reason for the necessity to terminate the pregnancy. We were informed of that, and we were told several times that that may be the case and actually in our outcome it was the case. And that's the hardest, hardest solution to deal with, because you never know why, and you're always looking for an answer.

The outcome of the post-mortem was that [the baby] was absolutely fine. He had developed mentally, he was in the higher quartile of his development. He was big for his size, all of his other organs were absolutely perfectly developed. His lungs were developed to the correct gestation of when we discovered there was a problem. There was nothing physically wrong with [the baby] at all.

With regards to the placenta, again the placenta was absolutely fine. They didn't find anything wrong with the placenta either. So after the post-mortem everything, there's still no knowledge as to why it happened. They're still not even completely sure whether it was premature rupture of the membranes. They only think it was premature of the membranes because I sat up in bed one night.

The, the only reason I think that the, I mean the initial thought when you lose amniotic fluid is that it is premature rupture of the membranes, it was never confirmed with us that that was actually what had happened, even after the post-mortem, that was what had actually occurred. There was nothing, nothing in the post-mortem results to back that up, other than when they scanned me there was no fluid round the baby.

That's quite difficult isn't it?

It's very, very difficult afterwards to live with the decision you've made and you don't actually have a reason for what's happened. Very, very difficult.

Do you wish you hadn't had the post-mortem?

No, I'm, I think it was the right thing to do for everybody. I think we had, I think we made the decision to terminate the pregnancy and we've done that for reasons that I've already mentioned, and I think also, part of that, part of our responsibility was to have a post-mortem so that we didn't go into another pregnancy and have the same happen again. But again, that's not fair on the, on the newborn child. So we felt quite strongly, again, for that reason, that the post-mortem was necessary.

When parents knew they wanted to have another baby they were often keen to have a post mortem to find out whether the baby had inherited certain problems, and in some cases whether further tests were necessary. Sometimes post mortems had involved parts of the baby's body being sent to different hospitals for specialist tests, which could delay the final result.

Explains that the baby's post mortem pinpointed her 'dud genes' which made her feel the...

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Age at interview: 43

Sex: Female

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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 we're 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 we'd 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 there's the slightest problem on the first scan we'll think, 'This is it, finish here, start the next. And we can have as many babies as we want if we just keep going'.

Describes her baby's Fowler syndrome which was the result of both her and her husband having the...

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Describes her baby's Fowler syndrome which was the result of both her and her husband having the...

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Age at interview: 22

Sex: Female

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Okay, so I allowed a post mortem to be done, and once we got the results it diagnosed Fowler syndrome and it was basically, "What's that?" I'd never heard of anything like that. So what the consultant told me is the baby had abnormalities from head to toe. It was totally deformed. He had a lot of fluid in his brain. He had his - he had stiff limbs, he had a cyst on his heart. He had antroverted nostrils - because everybody's nostrils come down, but his nostrils were up. He had one of his legs was totally twisted, turned round, and when we saw his legs we could see the knee part at the back. It was just awful.

And basically he said, you know he tried to get more information from the books, from the internet, all you could get, my consultant, was one paragraph about the syndrome, and he was like he showed me the paragraph. He goes, "I was up all night on the internet, trying to find out about the Fowler syndrome", and he couldn't get anything, just that one paragraph. So they phoned up the genetics department at the hospital and that's where them people, they found out a bit more about it. They don't know much about it really, so they sent me for genetic counselling, and through that, through the genetic counselling, that's where they are going to try and find out, to see if there are any ways of diagnosing the Fowler syndrome. You know in the future; they can't do anything now. So it's just basically the Fowler syndrome, it's - well it says, from what information we had it's lethal in newborn babies, and I've been told none of the babies that have had Fowler syndrome have survived. No one has survived. It's to do with the brain - lots of fluid in the brain, and having stiff limbs.

It happens because of genes. Something happens in the genes. Now this was because me and my husband are from the same family, like my dad and his mum - my dad and my husband's mum are brother and sister.

Your husband's your first cousin?

Yeah, he's my cousin, that's it, that was the reason they gave me. At the beginning - because you are blood relatives, that's why this has happened.

Another thing I want to point out is, on the first scan I had when they first saw the baby I remember my doctor saying to me, "It's just, you've been unlucky", that was when they didn't know it was Fowler syndrome. He goes this could happen like in one in - I can't remember what figure they gave me - a thousand, or a million people. You've just been unlucky, and you know to find out now it's Fowler syndrome, and I've got in every pregnancy a one in four chance of it happening again, that' s shocked me, because I thought it was just that one, and that's it, but it's one in every four pregnancies, a chance I have of it recurring. Because in the chromosomes they've got the genes - in one - there's a pair of genes in there and one of them is a carrier of the Fowler syndrome.

So I'm a carrier of the Fowler syndrome, and my husband is, so it's come through my dad's and his mum's side. This has all come through the family, so when you have like one carrier - you have one gene that's normal and one that's a carrier, my husband's got one gene that's normal and he's a carrier, when it comes together - when both of the carriers, from both of the partners come together, that's when you have a baby like how we did, with Fowler syndrome. But you still can have normal babies, like I've had with my first one.

She approached her baby's post mortem in a very practical way because she wanted to be certain...

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Age at interview: 40

Sex: Female

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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 we've 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 we'd 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.

Not everyone wanted the baby to have a post mortem. Some women didn't like the idea of the baby being 'cut' or 'messed about' in any way after his/her death and wanted to retain the baby's dignity and keep the body intact.

Some parents willingly consented to a post mortem because they wanted to help medical research and hoped more could be done in future to help babies with similar problems.

She and her husband saw the baby's post mortem in a positive light as a contribution to medical...

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Age at interview: 36

Sex: Female

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I think it was something we'd 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, he's 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 there's 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 we'd 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.

When post mortems took so long that they stopped parents from burying or cremating the baby - one couple said it took 10 weeks before the baby's body was returned to their local hospital (this is unusual as the baby’s body is normally returned within 2 weeks) - they felt angry and upset though others seemed more prepared that a delay was the result of having a post mortem.

Some people wished that hospital staff had given them more information about the post mortem and talked to them about possible delays. One or two women would have liked staff to ask them for their thoughts about the post mortem rather than assuming they wanted the baby back as soon as possible. Though some parents resented any delay caused by the post mortem, one or two other parents said they wanted everything possible to be tested even if it meant delaying the funeral.

She gave permission for a full post mortem in 2002 but was distressed that it took so long to get...

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Age at interview: 38

Sex: Female

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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 we'd 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.

She appreciated having a copy of the baby's post mortem but found that the wording gave her some...

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Age at interview: 32

Sex: Female

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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 we'd 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.

Some parents felt extremely upset by the way they and their babies were treated around the time of the post mortem, though in most cases mistakes had happened well before 2003 when the Department of Health issued a new code of conduct about post mortems (see the resources page for link).

Last reviewed July 2017.
last updated June 2014.