Sally-Anne & Simon

Brief Outline: When Sally-Anne was pregnant with her first son aged 20, scans revealed he had an exomphalos*. He had surgery when he was a few days old, which was successful. But he is now 13 and still has digestion problems.

Background: Sally-Anne is aged 34. Simon is aged 33. They are married with three sons.

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Sally-Anne and Simon were expecting their first child. A scan at 12 weeks revealed that their son had an exomphalos* major. Sally-Anne was scanned regularly during her pregnancy and had her son by caesarean at 40 weeks and 2 days. She was able to say hello to him briefly, but then he needed to be transferred to another hospital to be cared for in neonatal intensive care unit (NICU)*.

Their son had his first surgery to close the exomphalos when he was five days old. Although it was successful in getting the organs back inside the body, the skin was not healing well. It was very thin which caused it to break. After a few more weeks in hospital they were able to bring their son home, although they did need to return to hospital every week for check-ups with the surgeons until he was about 5 months old. At three months old he had another minor operation to remove the gortex patch that had been covering the wound, to allow the skin to heal over completely. 

For the first year, he was developing well. Sally-Anne and Simon were caring for him at home. His third operation was at 18 months, which was when all his organs were put back inside and a pig skin patch sewn over this abdominal wall. He was in hospital for a week and this operation was a success. Their son has grown into a strong healthy boy, he was 13 years old at the time of the interview, attending secondary school, and loves football. But he still has several medical issues that affect his daily life, including severe sickness and diarrohea that he is still seeing specialist doctors to try and sort out.

* 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. 

* Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

Simon and Sally-Anne were stunned to be told their son had an exomphalos. The doctor painted a dark picture and repeatedly offered them a termination.

Sally-Anne: So we come out of the scan room, no picture no nothing at all like that and I think that was one of the hardest things because we hadn’t got nothing, do you know what I mean and then, you know, we phoned up our mums and was like ‘Mum there’s something wrong with the baby, there’s something not going right, we gonna go and see the consultant now’. So we had an hours wait didn’t we and then we had to go and see the consultant who then referred us off to the main hospital where we found out that [son] had got an exomphalos* major. We was seen on the same day with the fetal medicine team and the Professor painted a very dark picture didn’t he, it was, he didn’t know obviously if [son] and got any other congenital abnormalities, he didn’t know, he couldn’t answer none of our questions all he turned round and said was that ‘The baby’s organs on the outside of his body’ and he offered us a termination and that was the first thing that happened. So you go from the beginning of the day where you’re all excited to see your baby for the first time, you know, on the TV everything else like that to being bowled over with your baby’s not very well, you know, there’s big serious problems and they don’t even know if your baby’s going to survive so, you know, we’re offering you a termination. I think when I come out that room I was numb oh I just didn’t know what to think to say to do, you know, I looked at Si and it was just empty wasn’t it, we was just, there was nothing because we’d just been painted this big dark, dark, dark picture and the ending conversation was, you know, you can terminate of you want to but come back in a few weeks and we’ll do a CV, a CVS test or amniocentesis to see if the baby has got any other congenital abnormalities.

So that was at 12 weeks and quite unusual I think to have had the scan and the meeting with the consultant in the same day so you must have felt like you were hurtling through this experience.

Sally-Anne: Yeah.

And they, there was, they just sent you away and there was a gap of a few weeks before?

Sally-Anne: Yeah it was 12, 13, 14 it was roughly around about two, two and a half weeks because it was just they’d left the ball in our court of what to do. Because at that point we didn’t, all we got was this tiny little leaflet where it says baby’s organs are on the outside of the body and, and that was it that was as much as what we knew. I can’t even say if he turned around and used the phrase exomphalos, I can’t, I don’t know, I can’t, you know, because it, it was just so doom and gloom painted this really dark picture saying that not many of these baby’s survive and there’s always, you know, there’s other congenital abnormalities for example Edwards syndrome and it just painted this really dark picture. And it was only until after we came back home didn’t we and the we sat there, both me and Si was talking and Simon said them famous words, didn't you, and that was.

Simon: If his heart is still beating and he’s still breathing, that’s good enough for us, we don’t need to terminate.

Sally-Anne: And that was our decision that we was like, you know, we’re gonna carry on, we’re gonna carry on through this. when we went back, I mean, even after telling the, the professor that no, you know, we’re gonna continue, we’re gonna continue with the pregnancy, he’s got, you know, he’s still our little boy, he’s still our baby and it doesn’t matter how he is because we’ll love him none the less. And even after saying things like that we were still offered the, I mean we was offered the termination, up until round about, I’d say round about 18/19 weeks.

*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. 

Sally-Anne was relieved scans showed her son didn’t have any other anomalies, but she knew he was in for a long fight.

And then we came away and we had to wait then for the test results which was, I think was around about two to three weeks and I had a phone call where they turned around and said to me that [son] had got no other congenital abnormalities* and it was just an exomphalos* but it was a very large one.

Okay, so was that presented as good news or bad news or?

To me it was good news, it was positive because he'd got no other congenital problems we knew it was just a matter of fact that his abdominal wall muscles had closed so it was just a matter of trying to get that fixed. We was always under the impression and we always knew the risks of [son] you know, them was, them was quite, quite laid out to us, wasn’t they, very thick, you know, there was early labour etc. about, you know, the chance of survivals and things like that. So we, we always knew that we was in for a tough road but it, it was the better out of the two, do you know, what I mean at least we knew it was the lesser evil, you know, he was, he’d got this problem but it was, you know, operable. 

It’s that was quite hard because, you know, even, even down to the day before I had him and that I couldn't, I couldn't picture a baby, all I could see was this big what, you know, what was going to be this big hernia* coming out, you know, coming out of his body. See so when you know when you see like people who are pregnant and they’re like oh yeah well we’ve had the scan and you can see he’s got a lot of hair, you know, but I looked at the scan and it was like you couldn’t see none of that all we could see was our baby’s got a lot of fighting to do, you know, and it’s, and it’s that side of it that was, you know that was hard as well wasn’t it cos we just, we just didn’t know where to turn. We just didn’t know where to turn.

* Congenital
A congenital disorder, means it is present at birth, sometimes known as a birth defect, is an error of development that occurs before birth.

*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. 

* Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

Sally-Anne and Simon had an amniocentesis and were relieved it showed their son just had exomphalos. She knew they were in for a tough road, but they knew they wanted to continue the pregnancy.

Sally-Anne: Yeah it was 12, 13, 14 it was roughly around about two, two and a half weeks because it was just they’d left the ball in our court of what to do. Because at that point we didn’t, all we got was this tiny little leaflet where it says baby’s organs are on the outside of the body and, and that was it that was as much as what we knew. I can’t even say if he turned around and used the phrase exomphalos*, I can’t, I don’t know, I can’t, you know, because it, it was just so doom and gloom painted this really dark picture saying that not many of these baby’s survive and there’s always, you know, there’s other congenital abnormalities for example Edwards syndrome and it just painted this really dark picture. And it was only until after we came back home didn’t we and the we sat there, both me and Si was talking and Simon said them famous words, didn't you, and that was.

Simon: If his heart is still beating and he’s still breathing, that’s good enough for us, we don’t need to terminate.

Sally-Anne: And that was our decision that we was like, you know, we’re gonna carry on, we’re gonna carry on through this. when we went back, I mean, even after telling the, the professor that no, you know, we’re gonna continue, we’re gonna continue with the pregnancy, he’s got, you know, he’s still our little boy, he’s still our baby and it doesn’t matter how he is because we’ll love him none the less. And even after saying things like that we were still offered the, I mean we was offered the termination, up until round about, I’d say round about 18/19 weeks.

And how many people can you remember, I know this was a long time ago, can you remember how many people you saw in between 12 weeks and 18 weeks, how many appointments you had?

Sally-Anne: I’d say probably around about two or three because I went up for the amniocentesis didn’t I, and I had that at, I think that was done at 14 weeks. No that was it they wanted to do the CVS test wasn’t they, but they couldn’t do it cos [son] had moved so it would have meant going through my back or going through [son] basically so he’d moved, so we went for the amniocentesis.

Okay.

Sally-Anne: And then we came away and we had to wait then for the test results which was, I think was around about two to three weeks and I had a phone call where they turned around and said to me that [son] had got no other congenital abnormalities and it was just an exomphalos but it was a very large one.

Okay, so was that presented as good news or bad news or?

Sally-Anne: To me it was good news, it was positive because he'd got no other congenital problems we knew it was just a matter of fact that his abdominal wall muscles had closed so it was just a matter of trying to get that fixed. We was always under the impression and we always knew the risks of [son] you know, them was, them was quite, quite laid out to us, wasn’t they, very thick, you know, there was early labour etc. about, you know, the chance of survivals and things like that. So we, we always knew that we was in for a tough road but it, it was the better out of the two, do you know, what I mean at least we knew it was the lesser evil, you know, he was, he’d got this problem but it was, you know, operable. 

* 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. 

Sally-Anne felt that the whole tone of her pregnancy became negative, she was always expecting the worst outcomes.

The advice oh we wasn’t really given a lot of advice to be honest it was mainly the, it was just day to day and getting through the pregnancy. And that that was mainly, what they concentrated on. The last, I think about the last four weeks wasn’t it, no the last six weeks we was transferred then over to the fetal medicine department for weekly scans to make sure there was still blood going through the umbilical cord and things like that. But other to regards to [son] with his hernia it was mainly, you know, they’d told us about it but they never really went into any great detail and it was that bit wasn’t it where it was its yeah it’s hard to explain. It was like a, the terminate was that if we get him there then that’s great we’ve just got to get him there and that’s a lot of the time what we was told. See so when we was actually going through the pregnancy, you know, it was always me mum, you know, I’d go round to me mums ‘Have you had movements today?’ ‘Yeah I’ve had my movements,’ ‘That’s alright then’. And it was more of like a negative cos always expecting worse problems wasn’t it, you know, that there was gonna be a problem within the pregnancy you know, like I said I mean at 26 weeks I did have a show through I’d had a water infection. went to our local hospital and they was like, right, okay and I didn’t really know what to do other than started on the antibiotics but then, you know, I did like I said I mean I did start having contractions I was straight up to the fetal medicine team. And they’d got them all there ready but it was like we need to stop it cos you can’t deliver too early. we was told to expect a four and a half/five pound baby didn’t they cos they told us that [son] was very small you know, and they said that that doesn’t help matters. Luckily enough when [son] was born he was a lot bigger [laughter] but you know as I say everything it was all put down to a negative, there was not really, other than when they said that, that he’d got no other congenital abnormalities everything else was still a negative wasn’t it, you know, it was, I can’t turn round and say that whether it was me looking at it as a negative, you know, because I don’t know it’s hard to explain isn’t it. 

Sally-Anne felt people were offering her sympathy, when she really wanted to be treated like a normal pregnant woman.

A lot of people knew purely and simply because [son] was not the only one the estate to have been born with an exomphalos*. I know two or, a fair few that have got exomphalos on the estate, unfortunately I wasn’t in contact with none of them even to this point now, you know, I’m not, you know, I’m not in contact with them. But, you know, people would say ‘Oh, you know, how’s things going?’ but they’d ask me because obviously they know and with it being quite a tight knit community as well word spreads fast. So, you know, it was, but it as more people give you the sympathy vote and I wasn’t after sympathy I wanted, I needed strength, you know, not people saying oh I’m really sorry, you know, I’ve heard, I’ve heard about, you know, the baby’s this that and the other and I’m like I don’t want your sorry's, you know, I don’t want that I want you to just treat me as you would do any other normal pregnant person because, you know, even then it was we’re gonna get through this we’re goanna do this. But then when you’ve got people saying things like that to you it’s like, you know, it’s how to react and you don’t always want to turn around and say ’I’m feeling really crap today, you know, I don’t want to talk about this,’ you know so there’s that side of it, so it had its positives, you know, positives but it also had its negatives. 

* 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. 

Sally-Anne and Simon had been prepared that their son would need to be transferred, but it broke Sally-Anne’s heart to have to say goodbye to him so quickly. She counted every minute of the 27 ½ hours until she next saw him.

And to me I’d spent less than five minutes with him, you know, and then that was it was like we have to go, we need to move him now. And then they ran [son] didn't they out of the hospital, you know, the paramedics as well and I followed in the bed, the midwife who I’d got she took me in my bed to the front door to go and wave goodbye to him and I waved goodbye to my son not even knowing if I was ever going to see him again but I sat there and I waved good bye with us not knowing [tears]. that broke my heart because I hadn't even held him I’d been given a photo and that was it, I’ve got a photo on my bed, [partner] obviously had to go with [son] because he needed at least one of his parents there, so I was in one hospital and [son] was in another. And then that was it, there was nothing, for 27 and a half hours, you know, and I counted every single second.

When you say nothing, no news or?

The only news was when I was badgering on to the midwives to phone them up to say ‘look I need to know. I need to know what's happening’. They’d actually given [son] twelve hours but they never turned round and told me, the midwives never told me that that they’d given [son] twelve hours. They said that if they can get him through these twelve hours then we would stand a bit of a fighting chance and I mean I wasn’t being told none of that. So even when I spoke to them I’m glad but then in another aspect I wish I would have known because, you know, when your child’s been told that he’s got twelve hours I mean, you know, I would have wanted to at least been informed, been told, but no.

And all this time all I’d done was hold his hand and that again, I mean we was never told that, you know, that I wouldn’t be allowed to hold him on the day or anything else. We was never told none of that and I don’t think that, I don’t think, I mean I can understand where they were coming from because it’s, you know, [son]’s care was utmost, you know and the care that they gave him was, it was out of this world it was, you know, second to none. But I also wish they could have just kept us in the picture, you know, of what they were doing, you know, what they normally do is, is how to deal with an exomphalos* baby or, you know, any baby in that case, you know, I think that was the hardest thing being kept out of the picture and not being told of how the procedures went because, you know, I didn’t know none of this I was, you just had to go, you know, just ride it type of thing and just go with it. But I think it would have been nice to have been able to prepare myself because I've got no, there was no preparations for that you know, there was no preparation at all and we knew, the only thing that we did know was that [son] was being transferred from one hospital to another.

* 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. 

Sally-Anne had a planned caesarean, but found it hard knowing whether she was planning for a “christening or a funeral” for her son who had an exomphalos*.

So planned caesarean?

It was a planned C section yeah. And then that was when it got really hard wasn’t it, I mean before, like I said before when I went down, before I went down to theatre, you know, met up with mum down in the, in the waiting room cos I’d organised for everybody to be there. There was both my mum and dad, Simon’s mum and dad all of my brothers and sisters as well as Simon’s because we didn’t know, we didn’t know the outcome of what was going to happen and I wanted them all to be able to see him, you know, at least if they could see him then if anything did happen they would have seen him. So that was one of my stipulations of when I went in I was like please just book the day off, I mean [son]’s birthday falls on my sisters birthday and that had gotta be possibly the hardest birthday card I had ever wrote. Because I’d got, I bought her an Auntie card and I write it from [son] and I turned round I’d said like to Si and I said to my mum, I said don’t give to her, I said not until we know [son]’s here, please don’t give it to her. So I went down to theatre, I’d already asked my mum if we was going to be organising a christening or a funeral because we just didn’t know, you know, I didn’t know, I didn’t know what to expect, I didn’t know what he was going to look like, I didn’t know if he was going to come out breathing for himself I was, I just, I just didn’t know. So I went down to theatre, I made sure, you know, I had a spinal, see so Simon could be there as well cos, you know, to me that was where he needed to be. So [son] was born wasn’t he, he was born at nineteen minutes past twelve weighing 7lb 12 ounces. So he was a nice, he was a nice weight considering we was told we was expecting a four and a half pound, five pound baby so Si always blames the ice cream. But then I mean [son] he didn’t cry, he didn’t cry at all to start off with and I mean I turned round and I said to Simon I said to him I said, “He’s dead isn’t he? He aint made it?” And that was when he started pulling all the blues back wasn’t it so that he could show me that [son]’s legs was moving and that feeling when I seen him kicking about that feeling it was yeah it was just, I knew then that we’d got that little bit of light, I knew. And then the consultant popped his head over, you know that delivered [son] and he was like he’s breathing, he’s breathing for himself.

* 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. 

Sally-Anne was allowed to wave goodbye to her son when he was transferred. She felt she had to ‘badger’ the midwives to get news of how he was doing.

When you say nothing, no news or?

The only news was when I was badgering on to the midwives to phone them up to say look I need to know I need to know what's happening. They’d actually given [son] twelve hours but they never turned round and told me the midwives never told me that they’d given [son] twelve hours. They said that if they can get him through these twelve hours then we would stand a bit of a fighting chance and I mean I wasn’t being told none of that. So even when I spoke to them I’m glad but then in another aspect I wish I would have known because, you know, when your child’s been told that he’s got twelve hours I mean, you know, I would have wanted to at least been informed, been told, but no.

Sally-Anne really appreciated the efforts staff put into supporting her to visit and hold her son for the first time.

Yeah, it was I had him obviously on a Thursday I couldn’t, I couldn’t get over the hospital until the Friday but I was quite a determined patient so within what six hours I was up and I was walking around because nothing at all was going to stop me. And the hospital they did absolute brilliant didn’t they, I must admit the care, like I said the care side was brilliant and they’d actually got a nurse and they allowed me to go and see [son] the following day, so I went and visited [son] on the Friday. And that was the first time I was able to hold him and actually bond with him cos I mean I’ve gone 27 and a half hours without even seeing him, you know, Simon he obviously stayed at the one hospital I was in the other hospital see so I, I hadn’t just lost my baby then I’d also lost my husband, you know, my partner, who was, we was in it together and on the night I was there I was, I mean I was on my own, you know, on that night and I hardly slept. And I’ll never forget sitting on the end of the bed and the midwife coming over I was absolutely sobbing my heart out and she was like ‘Are you okay?’ and I was like ’No,’ and I turned round and I said that I hated Simon because he was there he was with [son], I should have been there, do you know what I mean and, you know, there was that side of it and she was like ‘It’s okay don’t worry.’ And then that was when the very first time when you know, when she phoned up and she actually phoned up the children’s hospital to see how [son] was this was in the middle of the night, you know, I’d already gone from 12 ‘o’ clock in the afternoon until about it’s got have been easily one or two ‘o’ clock in the morning when this all happened. You know, and all I say was, you know, he’s okay and that was it. But you know, she says oh, but then the following day I was up and about and I was like I need to go, I need to go and see him, I need to go and see him. So they got me a wheelchair and they organised this taxi with this nurse who came along with me and they took me over to see [son] and I spent, I spent about four hours there didn’t I, four or five hours there. The nurses showed me all-round the rooms and our bedroom and, you know, I was introduced to [son]’s main nurse and everything else like that so I actually felt being a part of it then. You know, as soon as I walked, you know, I was wheeled in a wheelchair, someone said right Simon this is what this machine does, this is what this machine does because obviously [son] he’d got pipes and tubes and everything everywhere and you couldn’t see him for tubes and, you know, this that and the other. And that was the first time I’d actually seen [son] for [son], I didn’t see the hernia or anything I seen him as a little boy, you know, as a baby. So, you know, I turned round and I asked the nurse I was like ‘Can I hold him?’ cos that’s what I wanted to do I just wanted to just hold him that was it. So it took two of them didn’t it, it took two of them to get him out, two nurses to get him out and they put him on me and that was it there was no, there was no turning back then was there, it was, that was the point when I realised that we’d got a fight but it, you know what I mean, it could have been a lot worse, you know when, when you’re holding him that precious little bundle in your arms is like okay you know you’ve got this problem but that don’t matter cos you’re here, you’re here and that was all that mattered, you know, and you think to yourself but that feeling it was just I’d finally been able to have a cuddle with him and, you know something that should have happened, for obvious reasons it couldn't but, you know, it should have happened, you know, as soon as he was born and. Cos you still go back to the, the fact that the “why me?”, you know, and all that type of stuff and, you know, you think of all the other, other women, you know, they have their baby’s and they’re perfectly healthy and you miss out on all of that and I will never be able to get that back but I don’t think I’d have it any other way because, you know, he is an absolute buster he’s, you know, he’s a beautiful young man now, you know but it still, it still doesn’t make it any easier.

Sally-Anne described how her husband’s strength and positive approach helped her through.

Simon: It was all the way through it was more of a case of you had to cope there wasn’t time for emotions and feelings it was things had to be done and, you know, just get on and do it. A lot of it as well was you didn’t know what to expect and because you didn’t know what to expect, how could you be emotional, you know, about something you didn’t know nothing about? 

Yeah.

Simon: And, I mean it’s easier to talk about it now 13 years on because of what we know because we found out because of where we’ve been, who we spoke to and everything like that. But there’s, you’ve just got to draw positives from it all and if you start looking negative, it’s a negative atmosphere, you know, I mean everything starts to feel bad then whereas if you constantly drawing the positives, yeah you can have relapses but you pull through, there’s your positive. And there’s, you’ve just got to find the strength, draw it off people, doctors, nurses your own child. And you've just gotta move on through it.

Sally-Anne: ….No two ways about it I looked at everything as a negative.

Simon: I mean you walk into intensive care unit you’ve got a little bed with a little child sitting there with thousands of wires coming off going all over machines and you’ve got medicines and you’ve got this at the end of the bed you’ve got the board the electronic board. All you can hear is the sounds going bing bong bing, bing bong constantly just drums through your head. As bad as what it looks it’s there for a purpose its doing a job and that, that’s what a positive is, you know what I mean it’s as I say as bad as what it looks, it’s doing good.

Sally-Anne: And that’s that was one of my, that's one of the things that I pulled off Simon, you know, what I mean, every, everything that I looked at as a negative Simon would show me a positive and that's why I've always said that Simon is and was my rock and he always will be, all the way through there. Because in and throughout even now to this day, you know, when [son] has his issues Simon will always find a positive and when you’re dealing with something like that if you haven’t got the ability to find a positive yourself it’s a very dark place to be. But when you’ve got somebody who’s got the ability to find that positive and to show it you, it makes it easier, you know, because Simon, I don’t know how he done it and even now to this day I will never, ever, ever be, you know, I’m eternally grateful for what he did because when I was looking at everything in a negative way as I think, most mums would do Simon would point out the positive. You know, when I first walked into ITU and I seen all those machines I was like oh my word, do you know what I mean, it scared the living daylights out of me and then Si turned round and says ‘But Sal them machines are keeping him alive, them machines, you know, its them machines that are doing what they need to do’. And he says, you know, he says ‘you watch give it a few days and one by one they'll all start coming away’. And straight away it was okay it’s a bad situation, it’s a dark situation.

Sally-Anne recalled the rollercoaster of the first day. She was elated to be discharged and able to see her son, and quickly devastated when his condition rapidly worsened.

Well on the Sunday I’d just obviously just been discharged, well got out, got to the hospital didn’t I, we took the suitcase into the room and went straight into [son]. And [son]’s stomach was virtually flat and I was like ‘Oh my word they’ve done it, they’ve done,’ cos he was compression bandaged, I was like ‘They've done it they’ve managed to get everything back in’. I didn’t really know a great deal at this point about his SATS and his oxygen levels and things like that because I'd only spent, you know, a couple of hours with him really. And this machine’s just bleeping away and bleeping away and bleeping away and I just, you know, I just thought it was just one of them things because I was naïve to the fact that I didn’t understand what was going on. And we decided to go and get something to eat didn’t we and in fact we’d got one of the, one of [son]’s nurses and ‘like go on you need to get yourself something to eat now,’ so we went and got something to eat. Within that time span everything must have gone on upstairs because when we went back up was we wasn’t allowed back in the room to see [son] and we was told that his consultant was working with him and I was like ‘Well what’s going on, what’s, you know, what’s happening?’ the compression bandage had, you know, they’d actually put the compression bandage on too tight and his little body just couldn’t take it, it just couldn’t take it at all. See so everything that was originally been put back in had to come back out again and they did this on the ward, they undone the compression bandage and just released all the pressure and, and it was, it was very, it was touch and go wasn’t it, I mean they’d got the resuscitation packs in his room ready. And he'd gone back onto the, he ended up back in the oxygen tent didn’t he and things like that I’ve never, I've never witnessed that before I’d never seen, you know, I’m just looking, you know his head in this box and it was, it was quite a rollercoaster ride that day was because I, you know, I felt between elation and being able to come out of hospital and being with [son] and then when I got there he had this severe relapse and we just didn’t know where, what was happening.

Sally-Anne said she felt guilty having signed the consent form. Her son nearly died on the operating table.

Yeah five days old that was quite, that was one thing that was, that was [cough and laughing] that was one thing that I did find quite distressing. The, one of the things they came up with anaesthetic papers at that point me and Simon wasn’t married and you went to sign the forms didn’t you and Simon wasn’t allowed to sign the forms because of us not being married. So that was, I think that was again where the guilt came in because it was me that signed those forms and the surgery even though it went well his liver kept on kinking every time they was trying to get his liver back in and we nearly lost him on the table very, very, very nearly and that guilt then came back with a vengeance because it was I who signed that paper, you know what I mean and I felt that it was all on my head. And I know that’s probably the wrong way to think but I think when you’re going through it everything runs through your head and, you know, the taking him down to theatre, the waiting and you make sure that your mum had had a hold of him, hadn’t her, my mum, so see that everybody had had a cuddle with see so because again we didn’t know what the outcome was gonna be, you know, and the consultant was very open and honest, you know, he says I’ve done it, you know, a few times and some we’ve got through and some we haven’t, he said it’s just, it all depends on how strong he is. You know, and, we was told from the offset that this, this operation was a big one and he was in theatre for about five hours so it was quite a, quite a lengthy process as well. 

Sally-Anne and Simon knew that the operation was risky, and that their son might not survive.

Simon: Towards the end of it we could probably have the qualification to become a nurse or a doctor yourself we learnt that much there and it’s, I mean even now when you've been you hospitals and stuff, there’s still a lot of doctors and nurses don’t know nothing about exomphalos’s* and they’ll still ask you, well, you know, what is it cos you start telling them and the way you talk, you talk like a doctor.

Sally-Anne: Yeah but the information was, I mean there was a lot, you know, they gave us that hope, I mean [name] his consultant he did always turn round and say, you know, I've got babies right to the very end and then I’ve lost them, you know, just you’ve all, you’ve still got that risk, he told us the risk of when he was taking him into theatre, he says, you know, he, you know, it’s a very, it’s a very risky operation, every operations got it’s risks so obviously we, with this type of operation it is a lot higher, he says but then, you know, he's seen many exomphalos baby’s different, different sizes, you know, small exomphalos, large exomphalos or, you know, whether it contained the liver or not he’d seen, he’d seen many before. But he used to refer back didn’t he to the other, to the other patients he’d dealt with exomphalos, he would say I remember so and so, so and so he had this problem as well and, you know, and it made us feel easier as well because we knew that he was in, he was in good hands and I think that makes it a whole lot better, you know, and it, it makes, it makes you feel more safe and secure.

* 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. 

Sally-Anne’s clear message was that you are not along, there are support networks out there to help and support you.

And you’re not alone, because there is always, we’re here as well, you know, you’re never, ever alone, you might feel like it sometimes but you’re never alone. And you know, for the health you know, the health people I’d like then to start, I don’t know put a leaflet out with, you know, with the Facebook with the, with the, you know, like the groups that are on there because there’s always a support network out there, you know, they’ve just got to put the people in touch with us, you know, I mean I will, I have and I will continue to help them, I mean I’ve had people here who have been, you know, diagnosed and they’re pregnant with an exomphalos baby and I just say come down come and meet [son], come and hear [son]’s story because, you know, there is always a light at the end of that tunnel. And if I could have looked, 13 years ago if I could have looked at today I don’t think it would have been half as much heartache and tears than what it was, you know. See so but we’re always here and that you know there is a support network out there for exomphalos and gastroschisis I just think that the consultants need to be pointed to show people that there is the support network because I’d be lost without it and I would.