Amy

Age at interview: 39

Age at diagnosis: 33

Brief Outline: Amy’s daughter was diagnosed with exomphalos* when she was 15 weeks pregnant. She was 6 years old at the time of the interview.

Background: Amy is a social worker. She lives with her partner and their daughter.

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Amy was very surprised to discover she was pregnant. She was in her early 30s. She went along for her first scan at 15 weeks, and was told that her baby had a large exomphalos*. The next day she went to see the fetal medicine consultant who confirmed the diagnosis. The research that she had had a chance do on the Internet mostly just frightened her.

She found her consultant very serious and negative. She felt he encouraged/pressured her into having a termination, which she had decided that she wasn’t going to have. The various tests and scans that they went on to have, including a CVS, did not reveal any genetic problems, although the exomphalos was very large; the liver, stomach and bowel were outside the abdominal wall. Amy felt that she missed out on a normal pregnancy, as it became very medicalised with regular scans and tests. She and her partner decided to change hospital, as they were not completely comfortable with their original hospital. Although this meant that Amy would give birth in one hospital and her baby would be taken to another immediately, they felt it was the right choice. She highlighted two features that reassured her it was the best choice for them; one was a leaflet they were handed about abdominal wall surgery, indicating that the staff knew what they were doing, the other a café waitress saying a cheery hello and welcome when they first arrived. They were shown around the hospital and neo-natal intensive care unit. A caesarean was planned, but her waters broke and she went into labour earlier than planned (at 36 weeks), so she had an emergency caesarean operation.

Her daughter was born safely and Amy was able to see her briefly before she was transferred to the specialist hospital where she spent the next 3 months. Amy had to spend two nights on a ward with mothers and their new babies, which she found really hard.

The surgeons used the silo method and performed approximately twelve operations. Amy had to stay in hospital two nights and was then able to stay in a hospital hotel for a few nights so she could be near her daughter. As things stabilised and her daughter came out of intensive care (after 5 weeks), Amy was able to stay in a room with her, which she really appreciated. Her daughter was looked after by the same surgeon throughout, and Amy really liked him – she felt his manner was calm, steady and matter of fact, making no false promises.

Amy’s daughter came home after 3 months. She had to return to hospital for a hernia operation a year later, which Amy found very difficult. But apart from that, she has developed well. At the time of the interview Amy’s daughter was 6 years old. She has no ongoing health issues and is happy and healthy at school. She does not have a belly button, which has been noticed by other children (e.g. in the swimming pool) but it is a mark of uniqueness, rather than something she is bullied about.

*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. 

Amy was shocked to be told her baby’s bowels were outside its body. She had no idea what it meant.

And then few weeks later we went in for the first scan that every woman would have and scan, and scan, and it was taking a long time, and not sure what was happening and why it was taking so long and finally, someone said the baby’s stomach is outside of its body. And can imagine, what does that mean? It, it means nothing. So they went to get somebody to speak to us so I think when the registrar came to speak to us, to tell us a little bit about it, wrote down the word and sent us off to come back the next day to speak to the consultant.

So I went home in floods of tears, not knowing what to think, what does this mean? And I went home and I Googled, as everyone would these days, and I put it into Google and out came all of this medical information, which was very, very negative. So it was really dreary and difficult to read through all of this and there was research studies, very, very few that I could find. But everything I could find was very negative. A very, you know, there is this much chance your baby will have other issues and it, it was pretty grim reading. However, there was one thing I found and it was a group that somebody in Britain had set up about babies that have this issue and on that page I did see babies that didn’t make it, I saw babies that had other issues and I saw babies who only had that issue.

And I went in the next day thinking, no matter what, I have to give this baby a chance. There’s, whatever percentage of that was, I felt, before I went back to meet that consultant, that I wanted to give this baby a chance. The consultant was very negative [laughs]. I don’t know how else to put that, was very, very negative. We called him ‘Doctor Death’ in the end because each time we went it was just doom and gloom and it was very, very difficult. Even when I said I’ve made this choice, we’d made this choice, we’d thought about it, it was still the suggestion was there to terminate and it was brought up more than once to us. And I found, I found that really, really challenging because I’d made my decision and I’d given my decision to them and still felt like I wasn’t always supported by that. 

Amy had researched exomphalos* at home and so was clear she wanted to give her daughter a chance. She found the consultant’s manner very negative.

And I went in the next day thinking, no matter what, I have to give this baby a chance. There’s, whatever percentage of that was, I felt, before I went back to meet that consultant, that I wanted to give this baby a chance. The consultant was very negative [laughs]. I don’t know how else to put that, was very, very negative. We called him ‘Doctor Death’ in the end because each time we went it was just doom and gloom and it was very, very difficult. Even when I said I’ve made this choice, we’d made this choice, we’d thought about it was still the suggestion was there to terminate and it was brought up more than once to us. And I found, I found that really, really challenging because I’d made my decision and I’d given my decision to them and still felt like I wasn’t always supported by that. Although there was a nurse that was always there as well and she was excellent, I have to say. She was really attuned on me and my partner and how we were together and she helped us with that and so actually, felt through the pregnancy is, this was at the first hospital we were at, that this nurse was kind of the shining light and everything. She was really, really helpful and in the end we decided to change hospitals. 

I hadn’t realised that in this country you could choose where your care is given and we decided to change where we were going and I ended up sending a letter to the doctor to tell him of our decision. But I also sent a letter to her because I felt that she had been just as equal in the care up to that point.

No, he was he was fetal medicine and he was he was very stern. There wasn’t any warmth. He was he was very matter of fact. But, when you’ve just found this out and you’re trying to process what it means to you, to your child, it was, it was hard. It, it needed a different approach. I needed, I needed to know the full picture and I think that, that’s something I never felt at that hospital, was a well-rounded picture that, you know, some babies will live and they may have other problems [dud de dah]. I always felt by this doctor that there was a pressure to terminate, that I wasn’t making the right decision. Now I think some partly that was them or and maybe partly how I was interpreting. But I felt like I should have terminated in in the eyes there and that wasn’t something I was prepared to do.

*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. 

Amy felt more comfortable in the second hospital she tried. She felt it was the right place for her daughter’s care.

I have to say, that was one of the things that I appreciated the most. I’d gone into the hospital when I was pregnant, for that very first appointment and, when we were changing hospitals, and the surgeon said, “The care that you’ll be given here is the same as the care at the hospital you are at now.” And I said, “But I feel different here.” And I said, “I feel like I’m part of the client group, you know. It’s a baby and I feel like we are a family unit as part of it.” And I said, “Do you know, when I walked in this morning, we went into the café.” Sorry, I feel really emotional when I say this but it’s something so simple, there was woman behind the counter. So she was helping people and she saw me and she said, “Good morning.” Something so simple, but I felt so comfortable in that moment. And I just thought, no, this is where I want to be and this is where I want my baby treated. And something so simple but so effective and that woman will never know that that “good morning” meant so much. Sorry [sniffs].

So we then went upstairs and had a tour of the ICU and the hospital had a pamphlet and the pamphlet was about abdominal wall defects. Again, something so simple but I took that pamphlet away and I went, “This is where she needs to be.” I’d seen other babies in the ICU that day with exomphalos*. I mean they couldn’t tell me but [laughs] I’d seen enough. I could tell that their organs were outside their bodies and I knew that this was the right place. It felt right and I think that it’s just with anything now, as a parent. You know, finding that nursery, finding that school, you know when I feels right and this felt right and I felt comfortable. And so, you know, that was the place where I wanted her to be treated and, you know, I mean my partner was with me on it and it felt really like this is the right place.

* 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. 

Amy felt like a ‘mamma lion’ wanting to do the best for her baby, but wanted to feel she was having a normal pregnancy too.

The first hospital, I’d met with the surgeons. We I have to say, I was, [laughs] I had a binder full of articles about exomphalos*. I mean I had research, research, research and I mean, when I went into interview the surgeon, I had written out a list of questions and one of the questions I asked was, “Have you seen a defect this big before?” Our baby had bowels, stomach and liver outside and the surgeon, “I saw it once before in my training.” And I have to say I just did not feel confident leaving that day and that’s when we started looking elsewhere and I felt like, my baby hadn’t been born. But I felt like mama lion and I felt like I, I was the advocate. I felt I was her advocate. I didn’t we didn’t know if it was a boy or girl actually. That was, we wanted one thing to be normal because nothing else was. We had scan after scan after scan, scanning for, and, and everything obviously focused on her exomphalos or we went to another hospital and she had scans for her heart because that’s obviously, associated in a lot of cases. And each time though I’d say, “Oh can I have a picture.” 

So I have this book full of pictures of scans that you know, a normal pregnancy wouldn’t have. So it was trying to kind of gleam any positive things we could out of this pregnancy because it wasn’t a positive thing. And somebody would say, “Congratulations” and then you’d tell them and they’d go, “Oh.” People just didn’t know what to say. 

* 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. 

Amy said that while people ask ‘how’s the baby’, they don’t really know what to say if there is a problem.

And I think my partner actually was a lot different. For him, he, I don’t know if he didn’t want to know or for him that was his way of coping, I’m not sure but, for me, I felt like I needed to be saturated with information and to expect anything. And I think that’s how I went into it when she was being born that she may not live and it was really hard. It was really hard when you were carrying a child that you didn’t know if they were going to live or die and it was hard to tell people, any people actually, you know, family. But more so people that you didn’t know as well because you felt like you were burdening them, in a way, with sadness. And I wanted it to be joyful. This was my first pregnancy and it was, it was tricky. Somebody held a baby shower for me and it was the first and maybe the only time that it felt like a normal pregnancy. It was a really special to me, that time, because it was the first time that I felt really normal and it was really, really special to me.

Amy said even if you have to write in my notes, not agreeing with medical opinion, I’m going.

When she was born, it was quick and the anaesthetist came over and said, you know, “How are you?” I said, “Please just tell me what it is.” [Laughs]. I think they all probably suspected I knew along. Obviously, they had done lots of tests along the way and everybody knew I’d had a CVS. So they knew a hundred per cent what it was but we had never asked. We wanted to have something, something that was special to us and it actually was in the moment and she came out screaming and I think, I don’t know if nobody expected that. They wrapped her in a surgical serang wrap and in a blanket and dad got to hold her and we weren’t expecting it, you know. To me, it was just she’s coming, she’s being whisked away. That first night was so painful. It was so hard. One of the things that I wished the hospital had done differently is that they put me in a unit with nine other women, who all had their babies with them, and I found it so painful. Do you know, she was safe when she was in me and there she was whisked away to another hospital to be treated and was having surgery that night and I’m in a room not being able to sleep because these babies are crying, which is great, you know, for the other mothers but for me it was so painful.

I really thought there was some other way they could have, I don’t know if there was another room or something. It was just such a painful night and I was in there two nights and both were like that. And this I found it, I don’t know if, I don’t know if people weren’t used to having people whose children were whisked away. But the nursing staff, I’d say, you know, “I’d like to call to the hospital and see how my baby is, you know. She’s just had surgery.” And they were saying, “Oh, oh well, not now. In.” You know, you can imagine, I was getting really upset and, you know, I needed to hear how she was and finally one of them went and called, and let me know that she was doing okay. I needed to know that. I needed to have that reassurance. 

The next day I wanted to go and see her and the doctor had said, “No, you know, you’ve just had this c-section and your blood pressure is high.” And I said, “My blood pressure is high because my baby is in another hospital and I’m not with her.” I said, “I’m going to see her.” I said, “Even if you have to write in my notes, mother is, you know, not agreeing with medical opinion, I’m going. I’m going.” So we reached an agreement that I would go for an hour and so my partner and I went over to the hospital and I got to see her for an hour and it was just, it was so emotional seeing her for that first time, with all of the machinery and, you know, she had the silo* on and you know. So she’d had this first surgery and she just looked so helpless. And I felt helpless and I, you know, there was nothing I could do and I just, I was I was shocked, even though I’d seen, you know, thousands of pictures and I was, you know, this is what your baby will look like and I had a tour of the hospital ICU unit. 

* Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

Amy was able to cuddle her daughter, and wanted to be able to take her baby straight home, but sadly that wasn’t going to be the case.

So did you see her when she was born?

I did, I did see her so but they’d, well, they’d whisked her over and put the surgical sarong, and they’d wrapped her up and then gave her to him. And I, we weren’t expecting it. We, we I was, I was gobsmacked that, you know, he’s holding her. He brought her over and I was like, “Oh my goodness.” She just looked like a baby. You couldn’t tell she had a defect. They’d covered it, you know. She just looked healthy and, you know and you’re just like “give her to me”. I want to take my healthy baby and sadly, that wasn’t going to be the case. And you know, you just think in that moment, ‘I want my baby with me’ and it’s heart wrenching to have them somewhere where you’re not. It’s not what you expect.

Although.

I knew it was going to happen. 

Yeah, yeah.

I was prepared. I was prepared.

Yeah, there’s only so much you can get your head round something.

Yes, yes, absolutely.

Amy said all she could see was her beautiful baby.

I look at her and, and everybody saw the defect but I didn’t and one, a mum had said that to me before she was born, you know, all you’ll see is the exomphalos* at that first glance but after that, you’ll only see her beautiful face and she was so right. I only saw her face. I didn’t even see it after that and it was part of her. So saw the whole of her but she was gorgeous and I was, she was my baby and that, you know, and that instinct will kick in, you know, that you’re that baby’s parent and you will do everything you can for them. And to question decisions and, and, and the things that the medicals, our health professionals are saying to you that you can question. It’s okay to say, “Well, I’m not sure. What, can you tell me a little bit more about that?” It’s okay to say, you know, “Stop, that’s not the path. I don’t, you know, that’s not, tell me more about that decision and why you’ve chosen it.” So really you can ask questions and, and please do and I think another thing I would say too is to have some self-care.

* 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. 

Amy had expected to be able to bond with her daughter immediately. But when she was in intensive care it was hard. The first time she held her was like “Christmas”.

So the hospital hotel, which is right beside the hospital, and there was a couple of different units. We went straight from being discharged from the first hospital, where I gave birth, into the hospital hotel and I stayed there while she was in ICU. And it was right beside and it was so important. A little thing but, you know, to meet some of the parents there, not necessarily talking about your children. “What did you have for breakfast?” “Oh, what did you get?” Those little bits of snippets of conversation that were normal. They weren’t normal because you were on a different plane but it was little bits of conversations. So there was five weeks we spent in the hospital in their hotel, what a great thing and then to be able to move on into her own room where I got to spend every night with her. Was so important. I think, you know, because one of the buzz words when you’re pregnant and you’re expecting is bonding with your child. Bonding with your child and when you have a hospital, baby in ICU, how do you bond with them? You know, you you’re not there twenty four seven. You’re not touching them, you know, you’re touching them but you’re not getting to hold them and I remember the first time I held my child probably more than other people would, you know, because that moment was so precious, you know. She was three weeks then and the nurse was on and said, my mum was there, and the nurse said, “Would you like to hold her today?” And I was, do you know, it was like Christmas.

Amy felt that the only thing she could do for her daughter was sit by her side. It was a small bit of control, in a situation where she didn’t really have any.

I mean I think I didn’t give myself enough a chance, while she was in there, to take the breaks, even though I felt that I could trust people. I still felt like it was the only thing I could do for her, is to be by her side and talking to her, or reading to her, singing and, you know. And I probably never shut up the whole time she was there [laughs]. I was at the bedside and I knew a lot about the nurses by the end and they about me. But I think it was for me I, you know, and who I am as a person. It was just about that control and it was the little control I did have and finding control when you don’t have any. Or finding a way to be helpful, when you’re helpless.

Amy said it was the one thing she was able to control during those frightening weeks when her daughter was in hospital.

So our child was in there for many months. There was very few things that I felt like I had control over, while I was there, and one of the things that I could control was expressing milk. So something very, very simple but it was the one control I had. So she, I started pumping from day one. I think it was one of the things that I wish the hospital had helped me a bit more with. I was left with this pump and the curtains were drawn and they said, “Just do it.” I had, honestly, I’ve actually never seen anything like it since. It must have been from a few decades ago. It was an older unit I’m sure and I was just left with it. I had no idea. I have absolutely no idea. First time parent “here you go, express.” So probably could have used a little more assistance and, actually, that’s something I could have used assistance with later on. So expressed for two and a half months and after two and a half months, she started breastfeeding. We were so blessed. I mean after two and a half months, for her to latch on and take, I mean I was so lucky. And one of the, the specialists in that said, the nurse that was specialising in it said, “oh, we’re, basically, it’s to the effect, you’re an older mum. You’ll know how to do it.” This is my first baby, you know. She’s two and a half months old. She’s never done it. I’ve never done it, you know. We, I want help, you know, and there’s people here. So, even when the help is there, sometimes they make assumptions and I think that’s something that, don’t make assumptions. No matter how old I am or what my background is, don’t make assumptions.

Amy was terrified about the outcome for her daughter who had exomphalos. For her, looking at the worst case scenario was her way of coping.

It was really hard to see and sometimes you’d come in after, when she’d had the exomphalos* pushed that little bit in and how much pressure it was then putting on her lungs, and how challenging her breathing was and, you know. And seeing your child hooked up to machines and, you know, seeing needles in their heads or morphine going into them and it’s just so surreal. And I think that, and your emotions are just on another planet. It’s just something that when you’re in the moment, you can’t see the other end of it. You can’t, you’re so anxious. You’re so upset and it’s what to do with yourself, what to do with your emotions and how to cope with it. It’s something that you’re, I wasn’t prepared for. 

I can’t speak for everyone but I wasn’t prepared for that and what do I do with myself and, and who am I? My identity was a mother that, do you know, that was it. And then, when we finally left after three months, I just I didn’t know who I was anymore and I didn’t, I was so scared, you know, and here I was this older mother and the expectation that I would be fine going home with this baby and I was petrified. I had been in hospital where she’d been monitored every second of every day. I remember the first week we moved out of ICU, she took a turn, her breathing, when we were on the unit. So I was alone with her in the room and her breathing became laboured and I was petrified. It was in the evening. The nursing staff was, you know, skeletal and it was smaller staff. Not the doctors walking around and I was petrified. I was so scared watching her and feeling like I can’t do anything, where’s, you know, please come quick and I mean the nursing staff was excellent. They came to and they, I think they had to calm me down more than, you know. She quickly was fine but it really, really frightened me and I thought, will we have to go back to ICU and is this a longer road? And I think you read into every little thing that happens to your child. You, I don’t know, for me, it was just making it bigger. But and my husband was saying, you know, “Is it, are you just.” I, he, he was just kind of phrasing it like, “You’re seeing everything negatively.” 

But I think for me, it just was about how I coped. I had to look at the worst case scenario, like when she was in me and I still was, “She might die.” And I had to keep on a path for me, you know. Some people might be different, they might just think, “My child is going to live. I’m going to stay positive and optimistic and this is how I have to cope.” For me I had to always think that she might still die and it was horrible to hold that beside you. But for me, it would be the only way I could cope if she did. I had to be realistic I guess. I just always kept that and I probably asked, you know, the surgeon more than once about, you know, what’s the possibility? And I mean he can’t tell but I was still asking. 

* 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. 

Amy’s partner coped by being all light-hearted. She knew it was helpful for her and his way of coping, she also got pretty annoyed by it.

She said, “I notice you cry more when he’s around.” And I think it, it was a time when I could release. I think through the pregnancy, he found it really difficult. I think it was quite, it was quite shocking anyway that we were pregnant and then the roller coaster of the pregnancy, I think it was just so much for us to cope with as a couple. It was a really difficult time and then when she was in hospital, he was so optimistic, whereas I was so realistic maybe or he may say I was pessimistic. But, you know, for me it was how I coped. He coped by being so optimistic that, you know. I remember one time I was leaning over the bed looking at her and she was on an oscillating machine, which was where her body was jumping and she has pads, gel pads on her eyes and this is our maybe by then, maybe six week, eight week old baby jumping in a bed and totally out and I’m just devastated watching her. And I had this red hoodie on and I put the hood up and, I don’t know if I was cold, probably emotional shaking myself and he took a picture and put it on line and said, “Oh Amy looks like ET.” You know, and I mean this is this is just and e-mails. And the emails, he kept other people informed and they were always very humorous e-mails he was sending out and I finally sent an e-mail out and said, “This is hard. This is really emotional and it’s not like he’s describing it. You know, you think it might be a fun time and this is not fun.”

Amy was at her daughter’s bedside from morning until night. Her mum stayed with her, but she isolated herself from friends. She kept herself going with a diary.

So after she was born she was whisked off there, we had our first visit and that was, that was really emotional for me. And, actually, one of the things that I think people maybe, I don’t know if, I was released on the Sunday and then I got to stay in the hospital hotel, means the world. I mean honestly, it was it, it’s so vital. I mean we got to be right there. I was, you know, at the bedside from morning to night. I was able to be there and it was so important. I was so grateful that they have that facility. My mum stayed with me for the first few weeks there and I really appreciated that they had that. I had, we sent out an e-mail to friends to say we’d rather not have visitors for now. I found it, I found it too difficult. I couldn’t be the hostess. I just needed to be, I could only be one thing and I could only be that for her. I’d get up and I’d go there in the morning. The hospital staff there, over time, told me they were calling me glamour mummy because I’d come with [laughs] I’d, you know, get ready in the morning and I said, I just, I said it’s just me. I guess it’s one thing about being me, you know, there just needed to be some normality because nothing about this situation was normal. 

So had the first surgery, the first day and then had, we think there must have been about twelve different procedures as time went on. So I stayed at the hospital. I sat at the, I was there every day. I spent the whole time, probably didn’t a lot of self-care so there probably wasn’t a lot, probably something I would say to parents, who are going through it, is probably to look after yourself and I think probably everybody on the other side says that. But when you’re in that moment, it’s so difficult. I spent a lot of time at that bedside. I would, I make notes. I kept a diary. 

Amy’s daughter had an exomphalos and had had a silo stitched on when she first saw her in intensive care.

So when I came in that first day to see her she had the silo on. So it, it almost seems crude or old fashioned in a way. But really they sew on a mesh bag to the base, so the round base of her, her defect and then, at the top, they sew it together and then your baby is in, in the bed and, very simple again, they use elastic bands, tie them together and that is over the top of the bed so gravity really is starting to push the organs back into the body. So gravity is part of the medical process I guess, of you know, healing your child. So it’s quite a crude isn’t the word, but it’s very simple really, a really simple process of how they do it And seems almost, you know, in this day and age they could have some, you know, new contraption or some fandangled way of doing it but it was really sewing it on, you know. 

And I guess, one of the things for me was always the risk of infection, and it was something I was always really, really worried about, you know. Because it’s so life threatening for these little babies and I, you know, was really worried about infections. And even when she’d had the surgery then, you know, worried, you know, would that have exposed her to infection and so there was always that element of worry and then, obviously, seeing her and knowing afterwards that she wouldn’t be as well as she had when she’d gone in. And I think that’s it, when your child has surgery, you expect, at the other end, it’s going to be very positive and, you know, you’re child is in for surgery, they’re coming out better. And my child would come out, not worse, because it had to be done but she would, her little body would, didn’t cope as well.

Amy found the setbacks after her daughter’s surgeries very difficult, but trusted that in the long term they were worth it.

So she’d come out of the surgeries and you’d see that the silo was smaller. It was always very bloody. It was, it took me a little while to get used that after the surgeries. It looked really different and then, when she’d cry, you couldn’t hear it. You could just see it and I found that really hard, you know. Your baby was crying but you couldn’t hear them. It was silent cries. It was really hard but at each surgery I could see that it was getting smaller. That you, there was that bit of hope, you know, and I think that’s the thing that you carry with you every day is hope. You, you know, it’s, you know, it’s that, that hope and that advocate and you just think, okay, I’m this person and I, you know. I need to be there and I need to be hopeful and, you know, every time you had a surgery, you felt that little bit of hope that you were, you know, the light at the end of the tunnel that you will get there in the end.

You know, it was tricky though because the surgeries put more pressure on her. She, she’d be fine before the surgery and then she wasn’t afterwards and it was hard because you’d see that, how much pressure it was putting on your child’s breathing or, you know, and how, how they weren’t coping with it. But it was necessary and, you know, those are the moments like was this the best course of treatment for her? Was this the way that she should have been treated here? But you could see the progress and, you know, I at some level, you give away that control and say, “I have to trust that they know the best thing for her”. They’re, you know, they’re looking at her, the whole picture of her medically. And doing the best thing for her.

Amy was so happy to take her daughter out for the first time. The hospital lent her an old fashioned push chair, and she was thrilled to do something normal.

To bring her home was about her tummy being closed up so the muscles and the skin, her, oh well you know, at least it had to all be back in, you know, slight risk of infection. And then also her breathing and, actually, I had prepared myself so much for the exomphalos* that I hadn’t, hadn’t thought about other issues. So the breathing, you know, it was, you know, there was a chance there’d be other problems but I didn’t realise how much the breathing would be an issue. So it was really about her breathing on her own that was, you know, the, the hurdle we needed to reach and I could tell things were improving day by day, when I could bring her that little bit further. So it came to the point where there was less things attached to her. So I could move her that little bit, so I could hold her a little bit easier or there came a time when I could bring her to the bed on my own and that felt so normal. And it was such a, you know, a little thing. But I was so excited that I could take my baby to the bed and the nurses started letting me do some simple things or we’d give her a bath. I remember the first time they let me take her out. I was so, we went to Baby Gap. To buy her a winter outfit. It was, she was born in September so we went home in December fifteenth, we took her home and I remember going out, taking her out of the hospital and bundling her up. And she still had a tube in and, you know, we were going into, into the store and people are gawking at this baby and we’re in this really old fashioned pushchair that the hospital happened to have.

And, I’m pushing her along. I was just so happy. It was freezing that night, freezing. We had her totally wrapped up but I was like, this is so normal. We’re going out, you know, taking my baby outside. The first time she’d ever breathed air. So she was well enough that I could take her out and it just felt like, when we got that chance to go out, it was like, this is it. We’re going home soon and I, but I tell you that date they said we could take her home, oh, just so incredible when you hear that, you know. It’s fearful. It brings out new fear but that, yes, it’s your chance. You’ve, you know, she’s done it. You know, you feel so proud of your child that you know you’ve done it. You’ve done it.

* 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.

Amy wasn’t prepared for the emotional rollercoaster she was on. She was petrified to go home with her baby. In hospital she had been closely monitored and had doctors and nurses all around.

It was really hard to see and sometimes you’d come in after, when she’d had the exomphalos* pushed that little bit in and how much pressure it was then putting on her lungs, and how challenging her breathing was and, you know. And seeing your child hooked up to machines and, you know, seeing needles in their heads or morphine going into them and it’s just so surreal. And I think that, and your emotions are just on another planet. It’s just something that when you’re in the moment, you can’t see the other end of it. You can’t, you’re so anxious. You’re so upset and it’s what to do with yourself, what to do with your emotions and how to cope with it. It’s something that you’re, I wasn’t prepared for. 

I can’t speak for everyone but I wasn’t prepared for that and what do I do with myself and, and who am I? My identity was a mother that, do you know, that was it. And then, when we finally left after three months, I just I didn’t know who I was anymore and I didn’t, I was so scared, you know, and here I was this older mother nd the expectation that I would be fine going home with this baby and I was petrified. I had been in hospital where she’d been monitored every second of every day. I remember the first week we moved out of ICU, she took a turn, her breathing, when we were on the unit. So I was alone with her in the room and her breathing became laboured and I was petrified. It was in the evening. The nursing staff was, you know, skeletal and it was smaller staff. Not the doctors walking around and I was petrified. I was so scared watching her and feeling like I can’t do anything, where’s, you know, please come quick and I mean the nursing staff was excellent. They came to and they, I think they had to calm me down more than, you know. She quickly was fine but it really, really frightened me and I thought, will we have to go back to ICU and is this a longer road? And I think you read into every little thing that happens to your child. You, I don’t know, for me, it was just making it bigger. But and my husband was saying, you know, “Is it, are you just.” I, he was just kind of phrasing it like, “You’re seeing everything negatively.” 

Amy made a scrapbook which will help as she talks to her daughter about how she is different and unique as a girl who had exomphalos.

She was diagnosed with failure to thrive that first year of life and that was really hard for me to hear, you know. I was feeding her and I had heard from one of the health professionals, it’s very common with an exomphalos* baby to be very slight and but it was hard for me to have a child that had failure to thrive, you know. And I’m a social worker and, you know, I’m feeding my child and she, you know, she’s healthy but she’s so skinny and just wasn’t able to put the weight on. But then, you know, had gone, had started that life that way, had been so, you know, not been able to feed for, you know, for so long and so surreal. But it was but I think that’s one thing about the photos, about telling parents to take pictures. I think it’s important to document that time. It it’s hard but it’s nice to look back on them in a way, now, so you know, I looked at her I made this scrap book and it’s got one of the little monitors in there and it’s got you know, little things from the hospital that I’d taken away because it’s her life. It’s the reality. It’s how she was born and now she’s getting to an age where she’s aware. I remember her, about a year and a half ago, saying to me, “Mum, that person has a belly button.” And I said, “Most children will have a belly button.” I said, “If you find somebody who doesn’t, they’re very special like you are.” I took her and a little friend up to the city one day, when we were in the bathroom, her friend said to her, “[daughter], you don’t have a belly button?” And she said, “No, I don’t. It’s because I’m special.”

I thought ‘Perfect’ [laughs]. That’s what I needed to hear. “That’s right, you are. You’re special.” And it was, it’s emotional but it was very nice to hear her and I thought I want her to always think that, you know. She wears a bikini now. You know, she was down at the pool last night in a bikini and I just think, be proud of your body. You know, you don’t have a belly button. They’d created one but, as she grew, it just flattened out and so she doesn’t have one and she has a, we call it her Harry Potter scar. She’s got a long scar down her tummy and she knows about it but she’s not interested. It’s just that she doesn’t have a belly button. One of the older children at her school said to me, “Oh the other kids know that she doesn’t have a belly button.” And I thought, ‘oh’, you know, this is a child that’s not in her class but the other kids know and I said, “Oh.” She said, “Yeah, we think it’s cool she doesn’t have a belly button.” I’m like, you know, [laughs] fantastic. 

You know, I just I don’t want her to feel different. And it’s hard in those years growing up to feel that, you know, your different and, and she is different and it is unique and but I want her to celebrate that rather than being ashamed of it.

* 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.

Amy felt that she wasn’t always clear who was making decisions about her daughter’s care, and what role she and her partner had.

They did do other things. So I don’t know if I was always necessarily informed beforehand. Some, so I mean somebody would go round in the morning and, you know, you had to leave when the doctors did their rounds. And sometimes it didn’t always get fed back what was going on in those rounds and I think that communication, there could have been, I don’t know if they, I didn’t know sometimes whose responsibility it was to then let me know and.

Even now I don’t know who then should have told me some of the things. You know, Like I say one nurse told me about the tracheostomy and then got in trouble for telling me.

And I felt really bad but somebody should have told me. So I thought, no, you know, I felt really bad for her but somebody should have told me so yeah. Where was I going? [Laughs].

Just other investigations.

Yeah, so sorry, yeah.

Yeah.

Yeah so there probably could have been a way, so I didn’t always know so, at one point, they said to me about the tracheostomy thinking she had small lungs. And in the end she didn’t because they had done that investigation but they hadn’t got the results before they’d come to me about the tracheostomy. So for me, at some points, it was a bit of head scratching thinking, well, I would have thought you would have already done the investigations before coming to me. And then with her heart, all of a sudden there’s somebody doing a scan of her heart. So I don’t know if they necessarily had to tell me. Maybe it would be more, I guess maybe courtesy or maybe just keeping us in the loop about, you know, because if they had have found something. 

I, for me, I guess maybe it’d be different for different parents or maybe there’s somebody up front to say, “How much information do you want to know?” I don’t know. Maybe there’s some way of doing that piece of work with the parents and, and saying, “Where are you at?” And, you know, even if that is a tick box we do when we first come in about what support we need or what have you. But I think that was always an issue for me. It was about information gathering, so ‘where do I get it from and who’s the best placed person to give it to me?’ And that was something I was always trying to sus out. I really don’t know where that was even now.

You know, who was the decision maker? I don’t know. I don’t know because sometimes it was the surgeon, sometimes the consultant and about them working together and I don’t know where we fell in that kind of group of people.

Sometimes it felt like we were part of it and sometimes it didn’t and I think it depended on how strongly I felt about something as well.

Amy’s daughter had exomphalos and finding other parents through an online forum was her “number one support” during that time.

There might be more access but that’s something I didn’t have a lot of access to computers. And that was so important because I’d go down and I’d go into the groups where there was other mums with exomphalos babies all around the world and I’d say, “This is what’s happening to us today. What do you think?” And the feedback was incredible. Honestly, that was my number one support during that time with all these other mums who’d gone through it. So we were connecting and, even now, the group is even stronger. Six years on there’s people all around the world, who have exomphalos babies, and they call it different things in different countries but we’re all connected on a social media group. And, you know, when somebody new comes along, you can say, you know, this might happen, this might happen and to say that, you know, before your baby is born, nobody knows. You know, they can do tests and they can do scans and until the baby is born, they don’t know that whole picture. 

Amy remembers that the best piece of advice that she was given was, ‘you are your child’s best advocate’.

I would say to them to be hopeful. I would say to keep that but be realistic. I would say to educate yourself. I would say that you are your child’s best advocate. That’s the best piece of advice that I could give people is that you are that person. You know them best and you will know them best. You’ll get to know them on a different level, you know, you may not be able to hold them every day. But you will know your child and be there for them in ways that you can be there for them. So for me that was pumping or if that was sitting and reading a story or singing to her at Christmas time, you can be there. You can be there in ways that you may not imagined or may not have dreamed you would and I think that, that was one of the things I, I wrote a little poem before I had her and it was about something along the lines of, this is not a path that you would have chosen. But it’s the path that you were given and to make the most of it. And I think that’s it, you know. 

Amy said it was very important and healthy to get out once in a while. She didn’t do enough of it, but time on her own was very valuable.

To get out once in a while. It’s healthy and it’s something I didn’t do enough of and maybe for me that might have been to see more people outside. I, I found it too challenging but maybe it would have been helpful. I think to really have some time to yourself they put a TV in her room. I watched tons of garbage but it was the time I had on my own [laughs] and it was really, really nice to listen to music and I put things up on the wall. I tried to make it as homely as possible and, and, and I think one of the things I did too was really get to know the medical professions because, you know, the professionals because they were, they’re human and they were really nice people and I got to know them on a different level. And, and it was, you know, it was a really unique time and it was a really scary, scary time. But I think if you can make the most of your experience there and to really reach out to others who have gone through it before you because they’re the experts. They’re the experts, you know, and then on this group, you know, on the social media too there’s adults who have had exomphalos.