Interview 03

Age at interview: 39

Brief Outline: Apparently normal pregnancy, after problems with endometriosis. Vasa praevia discovered during labour. Baby needed resuscitation and intensive care, but recovered well with no long-term problems as originally feared.

Background: Children' 1, aged 5 at time of interview. Occupations' Mother- special needs teacher, Father- engineering co-ordinator. Marital status' married. Ethnic background' White British.

She expected to have problems conceiving because of endometriosis (problems with the lining of...

I had been trying to become pregnant, but hadn't actively been trying to conceive. I had hoped to become pregnant, but because of my history of complications - oh, pre-, because of my history of gynaecological complications over the years, since I was thirteen, I've had severe, chronic endometriosis, I was told that I probably wouldn't be able to become pregnant anyway. So therefore it wasn't - if I became pregnant, that was, that's great, and it would be wonderful, but if I didn't, then we would look at other options.

Right, so was it a surprise when you found that you were pregnant?

It was a fantastic surprise. It was one of the best surprises I think you can possibly have. It was very nice to find I was pregnant, yes, and very unexpected. Good news.

Okay, so how long had you been sort of trying or hoping to become pregnant, before you actually did?

I had probably been trying to become pregnant for about a year, before I became pregnant. After my last surgery for the endometriosis I was told I had a six month window of opportunity, where I could probably, I could possibly become pregnant, so I think we kind of took that as a good sign.

Can you just explain that to me, what was different in that six months?

I'd had laser surgery, and they had to remove a great amount of cysts, of the chocolate cysts, as they call them with endometriosis, and therefore that meant that it should have been easier to conceive, because they cause problems with trying to conceive.

And they would eventually come back?

Yes. Uh-huh, they do, they just, eventually it does come back, so over the years I've had several amounts of treatment to keep the condition under control and to remove, both by drug therapy and surgery, to remove these chocolate cysts. Obviously that leaves scarring behind, if you're having laser surgery then that leaves scarring behind, which again can affect your fertility.

After severe nosebleeds at 18 weeks, she had to stay off work and avoid strenuous activity for...

At first my pregnancy was very straightforward. I was very healthy, and apart from the usual things that everybody has - morning sickness and everything - I was, I was very well. I went to my work and continued to work, and then at eighteen weeks I had a massive nosebleed, and I was in hospital for ten days, with both sides of my nose packed, which was a most unpleasant experience. And then after that I was told to, to rest, effectively, and I was signed off work, which I found very frustrating, because having worked all my days I find that incredibly frustrating. And you want to be doing things for the baby as well and doing things, getting prepared, and, and that's very frustrating when you've got to limit yourself. But obviously I didn't want to be back in hospital with that again, so - do what you're told.

What has nosebleed got to do with pregnancy?

The nosebleeds they thought were a result of just simply the hormonal changes, and that I had a really particularly bad reaction. They could find no other reason - there was no blood pressure change or anything, and just they think that hormonal changes and the volume of blood in your body means that if there's pressure points, then these build up, and you, you get nosebleeds. And I just unfortunately had a really bad one that just wouldn't, wouldn't stop. And I, I lost quite a lot of blood, so had to get to hospital, so.

Okay, so you spent ten days in hospital dealing with the nosebleed. It sounds an awfully long time?

It was. It was [laughs]. It just, the nosebleeds kept happening, over and over again. Every time they packed it and every time you moved, then the nosebleeds would start again, so you were effectively just completely immobilised in your bed when that happened, so they could have a chance to heal, and the blood vessels had a chance to heal before I got home. So'

Okay, so you were signed off work?

Yes I was.

And then you had to rest a lot?

I was signed off work for the rest of my pregnancy after that eighteen weeks, that was me signed off work. And then I had to - I had to take quite a lot of rest, no heavy lifting and things like that. I could still do things around the house, and, but no heavy lifting, and obviously no decorating with nurseries and things like that. No doing these sorts of things, but, because later on they did come back, but not as bad, and they weren't as severe after that.

The internet helped her find out more information about her condition (vasa praevia) and decide...

Once, once everything was kind of clear in your head, I was able to go and find out about the condition itself, and that gives you knowledge and things, gives you a bit more - makes you stronger. Once you know what you're, what you're dealing with, and what's happened, and I think that makes you - that lets you be a bit stronger, as well, once you can know what's happened, and what you're dealing with. I think that's helpful.

Where did you get information about the condition?

The internet [laughs]. The internet is a wonderful source of information for everything. I initially sourced information in different [cough], excuse me. I used the internet to source information initially because the - I checked medical books and different other sources, and I couldn't find anything. I'd spoken to different people as well, and couldn't find any information, so my first port of call was the internet, and then after that I was able, once I'd got some information and things were a bit more settled, I was able to go back to the consultant with information and then ask questions. Because obviously at the time you're so involved with what's happening that you don't ask questions. There's lots of things that you want to know - what happened - why did it happen? What - there's things that I didn't remember at all because you've had surgery, and there's big gaps that I - at the time that I don't - that I didn't remember. And you want those gaps filled. And family can do so much but there's bits that you need to, to find out, and looking at her [daughter's] medical notes, and my notes, you can piece together different things, but it's still a lot of medical jargon and things, that you want to ask questions about.

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

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 we'd 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 there's no intervention - if they haven't been detected, these vessels can rupture, and once they rupture the babies effectively bleed to death, if there's, 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.

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

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, we've 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 there's something wrong, you can, you - you sense there's 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.

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

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 there's going to be something - there could be something wrong with your baby, and that there's 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.