Because, when [daughter] had her procedure done when she was six months old to actually get rid of what was left of the exomphalos*, the muscle closure wasn’st very good quality. It was very thin muscle he said, so what happened and what he forecast happening was that, as she grew, she kind of grew a little hernia. So when she cries or shouts or whatever, she gets a bit of a bulge and it’s not a dangerous hernia in the sense that anything could get twisted, but its there. And he so, basically, there’s always been like this ongoing discussion on whether that needs to be fixed or not because the hope was that it would stay the same size as it was when she was a baby.

And then it would almost be, you know, nothing to worry about. But actually, it’s grown with her so the issue could be potentially, if she had children, that, you know, that could cause problems because she’sll basically have a weakness in her in her tummy. So she actually loves it and calls it Christopher, which is a bit of an issue because she’sll go, I don’st want to get rid of Christopher. And I think, Oh, I know you love Christopher. I think I might have overdone that I love my tummy business because I wrote a little book for her and stuff and, you know, we used to kiss her tummy goodnight and that kind of thing and I think we may have overdone it [laughs]. I need to start going, Christopher is bad! But so we, we only saw, I mean we saw him last year and then we are going again when she’s about thirteen, fourteen, so that’s another four years.

And how has she coped with all of these, because I mean presumably she has no memory of the exomphalos but she will have memories of all these periods of hospital? I mean how has your daughter coped with it all?

She actually quite likes it. I think she likes it because it makes her feel special [laughs]. And I think it is just she’s quite extrovert and I think it’s very lucky that it was her that got exomphalos and not my older daughter because she’s very quiet, very introverted and I actually think she would have found the attention and having the focus on her really quite traumatic.

While my little one just loves it and it’s kind of what she’s used to. Because she’s always had health problems, that’s what her life is like and she actually is a very healthy, happy kid, who has these problems and, you know, it’s like, you know, she doesn’st have a belly button. But she just says, Well, loads of people have got belly buttons, you know. They don’st, they’sre nothing useful. But she says, Oh, you know, it just makes me a bit different from other people. And I think that’s quite good [laughs]. So she she’sll say, Oh I think, you know, other kids think I’m a bit of a celebrity.

Has she come in, has she had a rough time at all with that? I mean has she had any bullying or bullies at school?

No. She’s had the odd person, I mean I think because, before she went to school, she didn’st, she did go to play group a bit. But she didn’st go to nursery and she didn’st, you know, all of that stuff that my younger daughter did, you know, I never used to take her to toddler groups or anything because she used to just get ill.

Yeah.

So when she was that age, when kids I suppose don’st have any sensitivity at all and just go, [whoa] you know, she wasn’st really seeing other kids that much, who she didn’st know. And then at school, you know, she gets changed and things and people have asked her about it and she always just says, you know, I was really poorly when I was a baby. And she’s had a thing where people have refused to believe her. But she said an interesting thing to me. She said, I use it to assess people’s personalities. So she said, If I show people my tummy and, or I tell people about my tummy, and they just refuse to believe me or they say I’m being silly or lying whatever, I just think that they’sre not very clever people and I don’st really want much to do with them. And I was like, Well, that, [daughter], to be fair, most people do have belly buttons so I don’st think you should use it as a kind of, you know, like you’sre in, you’sre out thing. Maybe you could talk to them about it and kind of explain it a little bit more. But no, she’s had, she’s not that I’sve been made aware of it anyway, she hasn’st had any problems with it and, as I say, she thinks it’s quite a good thing.

* Exomphalos
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

And how have you coped as a family with her and her exomphalos and?

[Phew] It was very disruptive at one point, you know. We’sre quite, we’sre both quite sociable people and we just couldn’st plan anything for years, you know, because we, you know, we would try and say, Oh right, we’sre going to come and see this particular set of friends this Easter’s or whatever, and a lot of our very good friends actually don’st live where we are. We used to live in London and, you know, so, when we’sd been up in we’sd been up north for about four years when this all happened, and that was difficult because, you know, you were kind of cut off a bit from the people you would have really liked to talk to. And I think my husband, in particular, you know, he, typical man, he hasn’st got as many friends as me, and not me, as a woman might have, and I think the friend who he probably would have really liked to have had local then was not there, so that was difficult.

But yeah, I think it was the, the period, I think the period when it was we kind of knew things were going to be really bad, that was okay because it was kind of like right and I’sd find myself, if I know what the situation is going to be like or could be like, I can kind of cope with it okay because it’s like well, that’s going to be awful and the baby might die and all that. But it’s kind of, your brain can somehow get, get itself round that. But I think when you just don’st know and you can’st ever plan, you know, it could be a friend’s birthday or your parent’s wedding anniversary or something and you just can’st say, Yeah, we’sll be there.

So I think, I in particular, got, got quite isolated and people’s lives goes on and yours doesn’st. You’sre just stuck, you know. You’sre, you’sre just kind of, you know, work-wise, everything and I, you know, I never wanted to be a housewife. That was never how I perceived myself. I’sve always worked, even, you know, working from home or whatever and I just couldn’st do that during that period.

You’sve touched on this a little bit, but how did the experience impact on your working life?

Massively. Massively. I was working as, I was marketing manager for an art centre and I actually gave that job up just before I got pregnant because of the impact it was going to, about to have on my elder child because they wouldn’st let me collect her from school. And I just didn’st think that she could cope with going to after school clubs and stuff just because of how she was at the time. Looking at her now, it seems unbelievable but, you know, that was true at the time and but I was working freelance and my plan was never to be, you know, a stay at home mum or anything like that. It just wasn’st not, not what I am and but there was a point at which I just couldn’st do a job and I thought, gosh, am I ever going to work again because I just couldn’st realistically. But I mean I used to, I remember, at some point, saying to my husband, before he started working in [country abroad], Right, we would have to do everything right. If I get a job, you would have to be the main contact for any problems with the school because I would just get sacked from any job, you know, because I haven’st got, you know, I haven’st built up that goodwill. So if I go and get a job, you need to be that, the main contact. But, of course, that’s not possible in [country abroad] and him being hundreds of miles away [laughs]. And yeah, I think it, yeah, it was just that thing of not being able to be in a job working with teams necessarily because how can you do that if you can’st be relied on.

So I actually did, that was when I did transcription because it was the only thing I could think of that was kind of, I could accept it. If I knew my daughter was well, I could say, Yes, I can do the work. And I knew that if she then had to go into hospital, and this was, I started doing that after the period where she was, I mean it was once they’sd got things under control and we knew what was happening. So I did that for about a year I think. You know, just doing qualitative research stuff just because I just wanted to get some money in and, and it made me feel better that I was doing something.

Yes.

And I’m a fantastic transcriber [laughs] I don’st do it anymore but I’m fantastic. But yes, so yeah so it, yeah, it has had a big impact and kind of continues to really because well, I suppose between my husband’s situation with work and my daughter’s tendency to get ill, she had her first ever hundred per cent attendance for school last term. So.

And she’s how old now?

She’s now eight. So that’s been quite a long period and then, so yeah, no, it has, it has had a massive impact. But it’s also allowed me to, you know, I’sve done three different qualifications. I’m now taking an MA, you know. I kind of think, you know, and I went into work that I probably wouldn’st have looked at before. So, in a way, it’s given me a weird kind of freedom to explore things [laughs]. But yeah, I mean I think it will it’sll continue to impact on me financially because you see I don’st, I haven’st had a pension for years, things like that. So and also I kind of miss teamwork really. I’m not a natural working from home, not in a job that doesn’st have an awful lot of contact with people other than e-mail, that’s not really my natural my natural environment. But it was, it’s something that’s developed because it’s the only thing I could do.

Yeah, I think we just cope with things very differently and so I think it began when I was pregnant and I remember, I mean, you know, I was sixteen weeks when, when the diagnosis came in. So, you know, not long after I could feel the baby kicking and stuff. And, you know, when we had my first daughter, you know, my husband would, you know, give me a cuddle in bed at night. I would lie on my side and he would, you know, rub my bump and feel the baby kicking and stuff. And then, he had been doing that, although I suppose the baby probably wasn’st kicking at this stage and then as soon as we got the diagnosis, he stopped doing it. And I did call him on it and said, you know, that’s out of order because you can choose to withdraw from the baby, but I can’st [laughs].

And then I think because then I was pregnant, you know, and I was feeling that I needed to look in to funerals and things like that and he just, he just could not go there at all, and he’s much more, he’s, he’s quite an optimist. He’s got quite a sunny outlook on life and [laughs] I haven’st really, I’m quite a, I wouldn’st say I’m a pessimist.

But I do, I’m quite a realist I think and so that was just my way of coping, and I think it is difficult for men. But, you know, it’s, he could leave the situation and go to work and I couldn’st, you know. Because you’sre carrying the baby or you’sre, you know, you’sre the main carer and sorry, I feel a bit disloyal saying this stuff. But I think and, you know, when there was a big deal about him going home the night she was born and, which, you know, could have meant her being on her own, when she died, which just to me is I’m horrified thinking about it. And then he actually went back to work very quickly, when while she was still in intensive care, and she was only in intensive care for ten days. So he didn’st even take kind of proper paternity, and I think he’s very much a, he never wants to let anybody down.

So my take on it was that, I think what happened is he was so busy trying to make sure that our elder daughter was okay and that work were okay, that he kind of forgot about me a bit, and about our younger daughter. And I think he was holding himself back from our younger daughter a bit when she was, because I think that’s he difference – When you’sve been carrying a baby, even if the baby dies when it’s a few hours old, you’sve still loved that baby and given it all those vibes, if you’sve bonded. I mean, I know some mums just prevent themselves from doing that but I think that’s probably quite hard to do when it’s kicking and moving about inside you. So I think I already kind of had a relationship with the baby and I don’st think, and I think he held off from that.

She was in, well, she was actually, she did really well on the day she was born. So, you know, we’sd basically been told that we don’st know, you know, what’s going to happen when she emerges, you know. It will, We’sll assess her and then she will go to intensive care. But she wasn’st ventilated and I actually breastfed her the day she was born, which was amazing. And then it all got a bit difficult after that but, basically, what happened was I obviously, couldn’st stay the night with her but I was in a private room in, on maternity which was brilliant because, you know, the thought of being next to other mums with babies; feeding babies and crying babies [ugh]. And that’s something I hear from mums all the time, the thought of that is just terrifying. But they put me in a room one my own, it was, I didn’st pay for a private room. They just found me a little corner which was brilliant and. I just, I remember I just, there were, you know, my husband, I went down to see her with my husband and gave her a cuddle and breastfed her and, you know, it was all seemed to be going really well. And then and, you know, I felt well, she’s with, you know, these nurses’s.

And I was just left in the hospital and I think I, I must I think I went down there quite late. But, you know, my husband had taken me down and then I just couldn’st sleep at all and I remember ring-, getting them to ring at three am or something like that and saying, you know, Is she okay? And they said, Oh yes, she’s fine. And then, basically, my husband came in the next day, not that early, and took me down and she was on ventilation and she’sd nearly died during the night. Because the surgeon had decided to try and push everything back in and she went into respiratory distress and nearly died. So that was a bit of a shock [laughs].

I think we had a few months that were that were kind of seemed liked kind of normal family life I mean, you know. It was like, wow, that was a really full on experience. But you know, that’s over now and, and kind of, you know, get on with it. And then the next spring, so it was kind of the spring after she’sd been born, she just started getting incredibly ill and we had suddenly massive dashes to the hospital with respiratory distress, and you know, having to call ambulances and just awful.

And I think, in a way, that was worse than the original thing because it wasn’st anticipated and while, you know, I found when I was on the surgical ward mixing with other mums that the ones that were in the worst state, emotionally, were the ones that hadn’st had a clue before the baby was born there was a problem.

And then, you know, they were expecting to take home a bouncing baby and then they were told, Oh the baby has heart problems. Or, you know, really tough. Well, I think I was a bit better because I was knew what was coming or I, you know, kind of knew what was coming and, you know, had anticipated the worst so anything above that was great. So, but yeah, so with the respiratory problems it was a real massive shock and also we didn’st know whether there was any solution to them. Well, with the exomphalos* we had always been told, you know, as long as the baby can tolerate it, we can fix this and, hopefully, he or she will go on and have quite a happy, healthy life.
But with the respiratory problems it was just like, well, what’s causing this, what the hell is going on? You know, it just didn’st, it came from nowhere, so that happened several times, well, a few times and, you know, she was in hospital a week here, a week there, you know, had pneumonia, just really poorly. And so that period was really worrying.

And presumably you were into a whole different set of doctors.

Yeah.

And specialists.

Yeah.

At that point.

It was respiratory team.

Okay.

And, eventually, after this had gone on for a while, they said, Look, we want to have a look down her lungs and see what, what, what the problem is. And so that happened when she was, I think she was eighteen months, might have been a bit older. And we’sd, you know, we’sd had endless problems with, you know, a cold would end her up, you know, somebody would sneeze in the street and she would be in hospital two days later. I used to absolutely curse anybody who got ill, who came anywhere near her. So yeah, they took her in and had a look down her lungs and, basically, she had something called tracheobronchomalacia. So her lungs had grown thin and long because of, and her trachea had grown floppy, they think because she didn’st have the same support in her trunk below her diaphragm. So it kind of made sense for, you know, things had just [laughs] dragged down. But it meant that, when she got infections, or when hay fever impacted on her, which we discovered later was a problem, she’s also asthmatic, which we discovered later, it just meant those tubes were not coping at all with that.

Which, and it was great once we actually knew that because, basically, the team immediately put a programme in place. So it was like we didn’st, we no longer had to go, we didn’st have to do the calls to the ambulance people going, you know, going through the whole thing. We had immediate access to the emergency respiratory wards at the hospital with that. We didn’st have the ring a GP. We didn’st have to ring anybody.

*Exomphalos
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

So we were offered, on the spot, a CVS and I’sve always had a complete a real terror of having a, a, a CVS or an amnio done. But because I think we were just told that, you know we were told you can have it, basically, now or come back and have it, you know, in a week. And I just said, No. I just said, I want it now. Because I knew that if I went away, I wouldn’st come back for it. And again, that’s something else, you know, I end up just getting more and more wound up by it. But it was, I think, how it was done for us, is just extremely considerate and kind. So had the CVS done, which was fine. It wasn’st particularly unpleasant or anything. It was fine and then waited, and where we are and certainly when this happened, which was eight years ago, you normally get the results back extremely quickly because it’s a bit of, we have somewhere that’s a real centre of excellence with the results. But, unfortunately, these spanned Christmas so that was, basically, the worst Christmas I’sve ever, ever had and, hopefully, will ever have [laughs]. Because we spent the whole of Christmas worrying about what was wrong with the baby if, if anything. Well, we knew something was wrong but we didn’st know whether Edward’s syndrome* was a problem.

So we then got the results back. I think it took five or six days, normally it would have taken two. But I know now that in other parts of the country that’s, what we experienced is just the norm if not longer. So that was a really worrying period and it came back negative which was amazing. And it was weird because I think having had that week where we just thought there’s a possibility that this baby just has no chance of life whatsoever, that once we got the results back, then it was like, oh, no Edward’s syndrome’s. It kind of make the exomphalos* pale into insignificance a little bit because we thought, you know, we spoke to the doctors, who basically gave about fifty-fifty chance of the baby being okay and we just felt, you know, we were offered the, the, the possibility of a termination. But we felt that there was a chance of the baby having a good healthy life and we felt that was something that he or she deserved, basically.

*Edwards’s Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

*Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

At what point did they start to discuss with you the birth plan and what was going to happen to the baby when she was born?

[Laughs] there was quite a lot of debate about it because my consultant was actually quite keen for me to have a vaginal delivery and because of my experience with my previous daughter, I wasn’st so keen. And I think a lot of mums that I’sve been in touch with, it, it feels, it feels quite scary. And also, you know, because I was so into Googling and going on the internet I think when I looked at the research that stuff was being based on, I could see what a small sample sometimes things were based on [laughs]. So I’sd be arguing the toss slightly and that, don’st get me wrong, I have enormous respect for consultants. I really do, but I think because this particular condition and because of the nature of my daughter was, they called it a giant exomphalos*. I mean it was really very big. So I think there’s that thing of things not being, you know, you can have something that for a smaller exomphalos is fine and you can get your head round. But for a larger exomphalos, could be really concerning as a as a mum.

And in the end, the liver was on the outside, not the outside, but on the inner edge, that’s not the way, right way to say it. The liver was in a very exposed position on my daughter’s exomphalos.

And the decision was that it could actually be very badly damaged during delivery, so I had a caesarean in the end.

Okay and how many weeks was she at that stage?

She was thirty nine weeks, yeah.

And did you find that discussion easy, easy is the wrong word, but you felt it was a constructive

Yeah.

discussion?

Yes. I didn’st feel that it was just like you’sre going to have a vaginal delivery and there is no discussion about this and my word is law’s. It was very much a, well, this is what we’sve experienced and this is what we’sre seeing in other hospitals.s And, and also very valid point, which is to have a child in intensive care, having had a caesarean section is a bit of a nightmare [laughs]. So I, I totally understand, having experienced that, why the consultant thought it would be a very good idea for me to have a vaginal birth, if at all possible. Because, having had major surgery and have a child in intensive care is, and the problems of driving. I mean it’s just, yeah, it’s not good. So and, of course, I don’st know what the birth would have been like, you know. I know they would have what’s the word, where they bring the birth on?

Induction.

Yeah, so they would have induced me because, of course, you have to have everybody at hand and you can’st, you’sre not allowed to go into, into labour normally. So again, that can you know, be quite a full on experience, from what I understand, from what friends have told me. So and, actually, what we know about [daughter]’s respiratory problems, I think a vaginal delivery could have been a real problem. But they didn’st show up on the scans. There was no indication before she was born that she had lung, lung difficulties. So going on the information that the doctor had from the scans, I think his, his angle on that was perfectly reasonable. But I was quite relieved [laughs] that, that was taken out you know, that we didn’st have to have any more discussion about it, basically, so.

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

Was your husband in the room?

Yeah, which I think was a bad idea on reflection. But yeah, I think for people waiting at home and that kind of stuff, I think it was really very hard. And I ended up losing a lot of blood and I had to have two blood transfusions, which complicated matters as well. But before, beforehand they’sd said, you know, that my husband would be able to basically, follow my daughter around once she was born and, you know, even though obviously I couldn’st go, that he could follow her everywhere, which was great because at least, I mean there’s no, it’s not natural to have your child, basically, you know, Here’s your baby. And I think I was allowed to, you know, kind of pet her a bit but it was like, Here’s your baby. Oh stop, you know, now we have to take her. Which I knew was going to happen but it’s not, it’s not natural. But the fact that my husband could go with her and I knew he was right next to her, that made a big difference I think.

Yes, everything seemed fine with it and then when I was s-, I think it was when I was sixteen w-, we had the first scan done, which I have to say was such a poor quality scan that, frankly, I remember joking about it and just saying, you know, could’sve been anything, you know [laughs]. No, how I would have got any information from that I don’st know. But everything seemed fine but I, weirdly, and I don’st really particularly believe in premonitions or anything like that. But I felt quite anxious about, about it, as things went on because I just kind of didn’st feel right. And I, and it, basically, I had bloods taken when I was sixteen, not, just standard bloods for, you know, the checks that they do at that age, that at, that stage and I remember talking to a friend and saying, I feel really guilty for having these done because I kind of knew something was wrong and I feel bad towards the baby that I’m kind of doing this.

This all sounds really mad but this is how I felt. And then we got a call from, just before Christmas 2004, we got a call from the midwife who, we got a call from the midwife and she basically said There’s a possibility that the baby might have spina bifida. You need to go to the hospital, the big teaching hospital near us first thing tomorrow morning and you see fetal medicine which was fantastic because, you know, got to see people, you know, got to see somebody really quickly. And I think she specifically rang me up late because I seem to remember getting a call at maybe seven, eight o’sclock at night and it was a blessing because I only had twelve hours to think and we had the first appointment at the hospital the next day. So like I know of people who’sve waited, you know, a fortnight more for that and it’s such a difficult time to be going through.

So we went to fetal medicine the next day and, basically were told, having spent, you know, hours Googling spina bifida’s, [laughs] and basically were told very quickly, because it was so obvious when they’sd scanned me, that the baby had a really big exomphalos*. And we’sd never heard of it, so that was a big shock. But probably the most, on that day, the most worrying thing was that we were told about the major genetical, genetical, that’s not a word, the major link-, chromosomal link between exomphalos and Edward’s syndrome*. So, as I understand it, about thirty per cent of fetuses have Edward’s syndrome. And, you know, the consultant explained how, you know, what a devastating diagnosis that is, basically.

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

*Edwards’s Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

And when I was pregnant, I remember saying to the midwife, you know, because you would, I went for these scans every two weeks and all the time the scan would just be of the bump, of the exomphalos*. And one day I just said, I don’st want to be funny, but could you do one of the whole baby and maybe one of her face because I haven’st had that and most women get just a scan of the baby and I just have loads of scans of the exomphalos and I can’st really show that off to people. And she was really, she was like, Oh I’m really sorry. I’m really sorry. And, obviously, nobody has asked before. But I think that’s something that’s important, that people remember it’s not just an exomphalos with a baby attached. It’s the other way around.

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.