Rarer complications

A few women experienced very unusual complications in pregnancy, sometimes with a risk of stillbirth.

Obstetric cholestatsis

One rare complication in later pregnancy is obstetric cholestasis, a problem with the mother’s liver. The only obvious symptom may be that the woman’s skin feels uncomfortably itchy, which makes it difficult to diagnose. One mother was told she had an allergic reaction and it took a while before anyone realised it was obstetric cholestasis. When the condition was diagnosed, she was offered an induction of labour within a few days. With hindsight she felt she could have asked for more tests earlier, and suggested there should be more information in pregnancy books about the condition.

She had terrible itching which was treated as an allergy at first, until a doctor diagnosed…

Age at interview 20

Gender Female

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Cholestasis is a rare disease with your liver which you can sometimes get with pregnancy. But, as the doctors and that said, your liver, you need your liver when you’re pregnant because it fights all the badness in you, your bloodstream and things like that. But also while it’s stopped working it’s fighting against the baby, so your child stops growing at that time. And I was about 34 weeks pregnant when I first noticed I had like this little tiny rash on my stomach which is the start of either pre-eclampsia or cholestasis.

I had this like little rash on my stomach and when I went to the hospital about it because it was really itching, it was keeping me up at night – although it was only tiny it was keeping me up at night – they turned round and they said it was like an allergic reaction to my soap powder. So they give me Piriton tablets and cream and told me to come back if the rash went worse. So a week after when I was about 35 weeks pregnant it had gone up my chest and down my legs and things like that. And they said I’d had an allergic reaction to my skin stretching, which I’d never heard of, give me more tablets, more cream. Went back again when I was about 36 weeks pregnant and they, they said I was allergic to the cream that they’d give me. So they give me another set of cream and asked me to come back in two weeks. So they left it for a week and I went back when I was 38 weeks pregnant and I said to them, ‘This is the fourth time I’ve been in now, I want something done about it. I’m getting baths at three, four oclock in the morning because the itching’s that bad. I’m getting freezing cold baths to stop the itching. I’m making myself bleed, because I’m clawing myself that much that I’ve had to put like bandages on to stop the bleeding because I’m clawing my skin that much because it’s really bad. I want something done.

So like they kept me in overnight and took bloods. And then on the Wednesday morning the doctor come to see me, and I asked the doctor what was going on and he like told me it was cholestasis and explained what it all was and things like that. And I says, ‘Well, why didn’t you notice this when you took bloods when I was 34 weeks pregnant?’ ‘I’m sorry’ they said, ‘But we lost your blood results, your blood results got mixed up with someone elses so we didn’t realise that you had it at all till now. So I says, ‘Well, I’ve gone now for nearly four, four or five weeks with this cholestasis. I need to know every, every detail about it. So like one of the midwives sat down and explained everything, that it’s about your liver and things like that, and stuff like that.

But they said, ‘The baby’s stopped growing. And I went, ‘What do you mean, the baby’s stopped growing?’ She went, ‘Well, once you start getting this cholestasis it means’ she said, ‘in some cases the child stops growing. She went, ‘In other cases, in other cases’ she said, ‘the baby just carries on as normal. She went, ‘But in rare cases the baby stops growing. She said, ‘And when you went down for your scan this morning’ she went, ‘the baby wasn’t engaged or nothing ready. She went, ‘The baby’s lying across you and it only looks like a small baby. So I said, ‘Well, what’s going to happen?’ She went ‘The baby’s going to need, might need special care when it comes out in case like it, it’s underweight and things like this.

So I said, ‘Okay. That was on the Wednesday. The Friday they let me come home for a few hours so I can get some bits together and things, because they were starting me off on the Saturday.

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Another woman with the condition was diagnosed very quickly, but was shocked to be sent home on the bus with information that said she could be at risk of stillbirth. She rang the hospital when she got home and was reassured, but had to wait over a bank holiday weekend for another appointment. After that she was checked every day and booked for an induction at 38 weeks, but went into labour spontaneously two days before the induction.

When she developed terrible itching the midwife sent her to hospital to check for obstetric…

Age at interview 43

Gender Male

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So was the twenty week scan the last scan that you had?

Mother’No. Then what happened was, everything was, everything had been fine with the pregnancy, completely fine. And then when I was about thirty seven weeks pregnant I woke up one night, and I had terrible it-, I was terribly itchy, from head to foot I was itchy. And it was a nightmare, really itchy. And it was a really, it was the start of the really, really hot summer, so it was an incredibly hot night. So I just assumed that, I had been a bit itchy on my tummy while I was pregnant and had been for tests once for obstetric cholestasis, because they do that as a routine. If you go to the GP here with itching they, as routine, send you for testing. So I’d been tested for it and there was nothing, they didn’t find anything. It was just basically pregnancy itching. And so, but it hadn’t been anywhere near as bad as this. So as it happened I was seeing the midwife, the midwife was coming to visit me the next day.

Father’And everybody was saying, ‘Oh, you know, it’s the hot weather.

Mother’And everyone was saying, ‘Oh, you’re always itchy, it’s really hot, you know. And the midwife was pretty much saying “Well, it’s really hot, you know. It’s not at all surprising that you’re itchy, but I would like you to go and be tested again for obstetric cholestasis. So I troiled up back to the hospital thinking, ‘Oh, this is a complete waste of time but the midwife said do it, so I’d better do it. And they tested me and I went away. And they then phoned me up that afternoon and said, “Well I’m sorry, wed like you to come back in again. We need to do more tests, but were suspicious that there might be a problem. And so I went back into the hospital and they gave me a scan, and they did monitoring of the baby’s heart beat. And basically it turned out that yeah, I’d got obstetric cholestasis, which is a liver condition.

And the reason why I was itchy was because of the bile acids in my body that weren’t being processed. So they said, “Well, yes, it is cholestasis. And weve got some information about it. Heres some medicine for, you know, heres a prescription for the medicine.”

But by this time it was 5 to 5 and the pharmacy closed, in the hospital, closed at 5. So I rushed off with the piece of information that they’d given me about cholestasis and my prescription for medication from the pharmacy, and got the medication, and then walked to get the bus home, and started reading the information, which basically told me that with cholestasis there was a risk that the baby could be stillborn. So I was standing at the bus stop with a piece of information off the Internet about obstetric cholestasis that told me I might have a stillborn baby. So I was completely in pieces.

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She rang the delivery suite about obstetric cholestasis. The midwife reassured her, but she had…

Age at interview 43

Gender Male

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So this was information the hospital clinic had given you?

Mother’It was off the Internet, information from the British Liver Foundation about obstetric cholestasis.

But they’d printed it off?

Mother’But they’d printed it off for me from the hospital. So by the time I got home…

Father’Well, no, you were, the worst thing was you were phoning me from a bus stop.

Mother’I rang you at work from the bus stop completely in pieces, and…

Father’And the bus of course was really late [laughs].

Mother’And the bus was really late. It was just one of these awful traumatic kind of ghastly things. So I eventually got home, and by then I was completely in, I was really distraught. And everywhere was closed by then. I couldn’t phone the GP, I couldn’t phone the hospital. But in my maternity book from the hospital I had the number for the maternity suite, and of course I was thirty seven weeks pregnant by then so, which is why I’d got the delivery, the delivery suites number. And I rang the delivery suite. And they were just brilliant. She was really, the nurse or midwife that I spoke to was just really calming, really upset for me that, about what had happened ,and incredibly helpful. And she asked me to read the results out that I’d been given from the bile acid tests and said, “Well, look, that sounds absolutely…

Father’Didn’t she phone the doctor first?

Mother’No, no, she said that first of all. She said, “Oh I’m, that doesn’t sound, that’s really not that much. Yes, it is a little bit but it’s really not that much, it’s still quite low. I honestly don’t think, I honestly think you’ll find – if you’re worried, you know, if you feel the baby, you don’t seem to be feeling the baby moving, then you’re welcome to come straight in, just come straight in. But I’m going to, give me your number, I’ll speak to the doctor and check and see what they say, you know. I’ve got all your records here.” And so basically they went off, spoke to the doctor and then they phoned me back at home and said, “Look, it’s really all right, don’t worry about it. It’ll be, you know, it sounds absolutely fine. It’s quite low, you know. Were here immediately if you start being worried or if you just want reassurance, come in and well monitor.” And so she was really – and the other thing, oh, that was the other thing, wasn’t it? It was a bank holiday.

Father’Mm.

Mother’So it was the day before the Easter bank holiday, wasn’t it? Was it Easter?

Father’Yeah.

Mother’The long bank holiday. So like nothing, no one was around, and I had the whole weekend before they’d then made an appointment for me to go back to the clinic where I’d been tested for the cholestasis the following Tuesday, but after a whole, which was the worst bank holiday in our lives, wasn’t it? [both laugh].

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She went into hospital every day so they could monitor the obstetric cholestasis. She would…

Age at interview 43

Gender Male

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Mother’So then when I went, so then I had to go in for tests every day

Father’No, they said you had to, didn’t they make you an appointment for the induction?

Mother’No, no, no, I did – up until – no, no, no, that was at, from the Monday to the Thursday I had to go back every day for tests. They monitored the baby for movements, and his heart and movements. And they didn’t do scans every time, they just monitored his heart and movement, and took blood samples every time. And then on the Thursday which was basically a week after they’d discovered the cholestasis, they decided that they would induce him on the Saturday, but as it happened I went into labour on the Thursday, so I had him two weeks early. But I’d known then that he would be induced because they said that, they, it was that awful, they were saying they would rather wait for a – that was, you’re right, that was the worst thing was that they said, “Oh, well, well wait till thirty eight weeks and then well induce him at thirty eighty weeks,” and it was like, ‘Why another week? What difference is a week going to make? Hes fine now, let me just have him, and hes fine.” But he was obviously then ready a week later and so out he came.

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(For more information see The British Liver Trust and NHS).

Vasa praevia

Another, very rare condition is vasa praevia, in which one or more blood vessels from the placenta or umbilical cord lies across the entrance to the birth canal (the cervix), beneath the baby. Often the condition is not detected until labour begins, when the blood vessel may rupture. This can prove fatal to the baby, as a mother who had the condition explained.

Vasa praevia is a very rare condition in which a blood vessel from the placenta or umbilical cord…

Age at interview 39

Gender Female

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Had you ever heard of vasa praevia before then?

No. Before my daughter was born I knew nothing about vasa praevia. I’d never heard of it. I don’t think anybody in my family, or anybody I spoke to at that time had heard of it. Everybody’s aware of placenta praevia, and other complications. I think they’re quite well publicised, but before she was born, no I didn’t know anything about it.

When the consultant came to say he thought that might be what had happened, did he explain what it was?

He did, the consultant did give a, a brief kind of description of what he thought had happened, about vasa praevia. He explained what that meant – that the vessels from the placenta are lying across the opening to the womb, and when they had broken the waters they had severed this, this main vessel, which had then meant that the baby had been haemorrhaging. But then again they wouldn’t be able to confirm again until the pathology result came back, because that would show them exactly the aberrant vessel, where it was, and if that was the case wed be able to see it. And as it turned out it was a velamentous insertion of the cord, and you could clearly see it through the placenta, so. But that took – we had to wait on that confirmation coming back.

Can you explain what vasa praevia is?

[laughs]

Just in a very ordinary way.

Vasa praevia is a rare complication of pregnancy, that happens about one in every two and a half thousand pregnancies. Within it the vessels from the – either the umbilical cord or from the placenta, lie across the opening to the womb, and obviously when labour starts these vessels can be pinched off, causing oxygen starvation for the baby, and could lead to brain damage, or they can rupture if theres no intervention – if they haven’t been detected, these vessels can rupture, and once they rupture the babies effectively bleed to death, if theres, if it hasn’t been detected before.

So otherwise healthy babies would die during delivery?

Yes. These babies are perfectly normal. These pregnancies are perfectly normal, healthy babies, and then, if it hasn’t been detected with scans beforehand, the, these babies’ lives are at risk. These, 96% of the babies who are not detected are lost. They do – they die.

Why was this never detected before you went to deliver?

It – the vasa praevia wasn’t detected because it’s not the standard of care within the UK to scan routinely for vasa praevia. There are very few places within the UK where they actually do scan for vasa praevia, and at the moment it’s not – it’s not routinely done. There are women, categories of women who are more at risk of developing the condition, but they still don’t even scan these women.

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She had been booked for an induction. The condition was discovered when staff broke her waters and suddenly there was a lot of blood. She had an emergency caesarean, which was frightening, but it all happened so quickly there was no time to ask questions. The baby needed resuscitation immediately after birth and there were concerns for a long time that she might have brain damage. (She is now five and developing normally). See also ‘When something is wrong with the baby’.

Her waters were broken during an induction, and suddenly there was a lot of blood. Staff…

Age at interview 39

Gender Female

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Once – things started to go wrong when the waters were broken. As they did that they found that there was a large amount of blood, which they thought to be fetal blood, and the midwife got a consultant to check, and they then decided to get me quickly into theatre, for an emergency section. But at that point they still didn’t know why the baby was bleeding. They had suspicions that it could be vasa praevia, but they – until they did, until the placenta was sent to the path lab afterwards, they wouldn’t be able to confirm it for sure, that it was vasa praevia.

So when, when they said to you, “Look, weve got to go to theatre”, what was your, what kind of state were you in at that point?

I think when you have, when you’re told that you have to go to theatre, and you know theres something wrong, you can, you – you sense theres something wrong anyway, by the, by the faces of the people, the medical staff who are round about you, who are obviously trying to keep you calm and reassure you, and, but it’s still very frightening, because again you’ve lost control, and you don’t know what’s going to happen to this much longed-for baby. So it is very frightening, and you’ve got all these questions that you want to ask, but there isn’t really time to ask anything. It’s just got to – you’ve got to get in and they can get that baby out as quickly as possible, get them delivered as quickly as possible. So very frightened, very frightened, and very concerned about what the outcome for the baby would be. But again you’ve just got to put your trust in thenmpeople that do this day in and day out, that’s why they’re there so.

Did they explain to you what they thought might be going on?

Not at that point, no. They didn’t – at that, at the moment that the vessels ruptured and I had to get to theatre, for the emergency section, they didn’t have time to explain things. All they were able to tell you was that there was severe bleeding, a lot of bleeding, and the baby had to be delivered quickly. And they were going to get you to theatre, and you would be sedated, you’d be under a general anaesthetic and have surgery, but that was it. It was very quick. It was within five or six minutes, and that was you [laughs]. You didn’t know anything about it, and the surgery went ahead, so until I came round, no, I didn’t know anything else, anyway. So I didn’t get a chance to ask any questions at that point.

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The baby needed resuscitation immediately after birth and there were concerns she might have…

Age at interview 39

Gender Female

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She wasn’t breathing. They said that they normally stop trying to actively resuscitate babies after about five minutes so I suppose you could say it’s a lucky set of circumstances that my, my daughter’s here, that they kept working on her. They had also been aware of a case three weeks before my daughter was born, and thought that this was possibly another case. The staff had had training again, and were up to, to date with it, and this obviously triggered an alarm, and they kept going with my daughter. So six minutes, yeah, that’s why they, they thought that she would be brain damaged.

How did you feel when, when they told you that that was a possibility?

It’s, it’s very shocking to think that this was a perfectly healthy baby, and a perfectly normal pregnancy, and that theres going to be something – there could be something wrong with your baby, and that theres a possibility of something like cerebral palsy developing and everything. My husband and I both knew that whatever happened we would still love her, because she was the most wanted baby, so we would still love her whatever happened, but it still, that still doesn’t make it any less devastating news, to think that there could be problems ahead for her, and more battles for her, so it’s, it’s very hard.

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Because vasa praevia is very rare, this mother was very concerned that other women and health professionals should be better informed about it. She devotes considerable time to raising awareness. The International Vasa Praevia Foundation and UK Vasa Praevia awareness websites can provide more information.

Other conditions in pregnancy

Various conditions or complications can affect women in pregnancy. Although most of these are quite unusual, they can have serious consequences for the mother or...