A-Z

Joe

Age at interview: 36
Age at diagnosis: 34
Brief Outline: When Joe was pregnant with her third child her daughter was diagnosed with an exomphalos* at her 12 week scan. After she was born she was also found to need heart surgery for a rare condition. She was 16 months old at the time of the interview.
Background: Joe is married with three children.

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When Joe was pregnant with her third daughter, it was discovered that it was a triplet pregnancy, but she miscarried two of the babies leaving just her daughter. At the 12 week scan an exomphalos* was detected. Joe was warned by doctors that she might need to stay in hospital for a few weeks after the birth as her daughter would be cared for in neonatal intensive care (NICU)*.

Her daughter was born at 39 weeks and taken to NICU immediately for assessment. Joe suffered a post-partum haemorrhage* and needed a blood transfusion. So she was not able to see her daughter properly for a few days, although the nurse did bring her baby to her for short visits. When her daughter was 5 days old, it was discovered that in addition to her exomphalos, she also had a rare heart condition for which she needed open heart surgery. She had to wait several weeks to put on weight before surgeons felt she was strong enough for the surgery. She was transferred from NICU to a specialist heart unit, which Joe found very distressing. Her daughter was covered in wires and there were many very sick babies around her. She didn’t put on much weight, but at 6 weeks her condition was so serious that surgeons decided that they had to operate, come what may.

The surgery was major, but a success. One of the side effects of her heart surgery was that she was left with a left vocal chord palsy, which means that at the time of the interview, aged 16 months she was not able to talk, and needed regular speech therapy. She was fed by NG tube* for over 14 months and now receives feeds through a peg* in her stomach. The period of time in hospital was very stressful and challenging for Joe and her husband. It was 8 weeks before she could hold her baby without wires and tubes.

Joe’s daughter was discharged at 4 ½ months old, which was a great day. But it was also very stressful and scary for Joe to be home with a 12 year old, toddler and baby with such complex medical needs. She needed several specialist visits daily from various healthcare professionals (including physiotherapists, dieticians and a speech therapist). Her daughter developed gastroesophageal reflux disease which made her recovery take longer, although she was much better once she could sit up. Building the confidence to look after her baby at home was a steep learning curve for Joe, and she said she was a hermit for the first few months while her daughter was really vulnerable to infections. She had the closure operation for her exomphalos at 14 months.

At the time of the interview Joe’s daughter was 16 months old, still fed by a peg in her stomach and not able to eat properly or talk yet. She was receiving regular follow up with dieticians, speech language therapists, paediatricians, and every few months has surgical, respiratory and cardiology reviews.

But Joe felt she and her family are managing to find glimpses of normal family life, albeit one with complex medical needs. Joe was planning to go back to work part-time soon.

*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.

*Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

*Post-Partum Haemorrhage
This is excessive bleeding following the birth of the baby. Most commonly it occurs within 24 hours of the birth and greater than 500mls (approximately one pint) of blood is lost (primary PPH). Secondary PPH can also occur where there is abnormal bleeding from 24 hours to six weeks after the baby is born.

*Peg
A type of gastronomy feeding device, which is inserted into a surgical opening in the stomach.
 

Joe wanted to make a happy surprise for her whole family. She asked the sonographer to write her baby’s sex secretly in an envelope and the card shop to pack a box of surprise balloons in the right colour.

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I don’t, I feel like there was one really good experience through the whole thing and I haven’t spoken about that. Oh. It came out of something that I knew we weren’t gonna get I knew we were never gonna get at-I didn’t want to find out the gender of our baby, I found out about the others and this now I didn’t want to find out I wanted it to be a surprise at the end. But I knew I was never gonna get that ‘Congratulations Mrs [Surname] it’s a girl, it’s a boy, here’s your baby have a cuddle, breastfeed go home.’ so I wanted finding out the gender of our baby to be a positive experience because we didn’t that we were going to get to keep her so I got the fetal medicine doctor to write down her gender in an envelope and we didn’t look at it and I took it to Clintons and I said to the lady at the desk, she must have thought I was bonkers, can you fill this balloon, in this box with a helium balloon with the right colour for the gender? We had a party at home and all the grandparents came round and we had all the kids and the kids opened the box like a big present and out popped all these big balloons so that was our, our like little moment of finding out. That was a really positive thing that was lovely. So there were, in amongst all of these awful experiences that keep you awake at night remembering them, there’s been some lovely experiences as well really lovely experiences and very bizarre experiences. 
 

Joe described about how hard it was talking to her daughters about needing to be away after the birth, and preparing them for the possibility of their baby sister not making it home.

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But delivery day came we were all desperately concerned that [Name], what [Name] would be like afterwards, I was as any mum would be was worried that I wouldn’t get to see her or touch her or, you know, would she be breathing would she, would she even be alive would she, yeah so that was, ……that was incredibly traumatic the time before, the build up to the birth the last few weeks were definitely much worse of the pregnancy than the rest.

Because of the anticipation?

Yeah it was, it was the, you know, we had a toddler that we had to prepare for me being in hospital for quite a while, they had initially said about four weeks if all went to plan and we would bring [Name] home and her paint and wait was the idea before she was born. so yeah we had a toddler to prepare we had how old was [Name], she was ten and, we had a ten and a half year old to prepare for mum not being here for this period of time and travelling to and from the hospital we had to explain to the children about what [Name] would be like after she was born we weren’t sure whether [Name] was gonna survive after she was born so we had to have the conversation with our oldest child about, about possibly not bringing [Name] home. After we’d had this big old pregnancy they could see I was pregnant and were very excited about me being pregnant we did have to have the discussions about not necessarily having the baby in the house to look after. So that was really difficult with the, having already had to tell them about the other twins not surviving that was, that was really stressful so, because there was no definite outcome and there was no definite ‘This is what we’re planning this is what we’re planning on doing with [Name] afterwards, this is how long it will take,’ there was no plan until [Name] was born, when they could see her it was just we have to wait and see. Which as a family when you’re trying to plan life and childcare and emotionally prepare your other children and the rest of your family and friends is really tricky when you haven’t got any answers.
 
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Joe had a postpartum haemorrhage after her daughter was born and was in intensive care for several days. Staff were able to bring her daughter to see her.

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I was in intensive in the hospital yeah and that evening they brought [Name] up to me and my husband put her in my arms and I was so off my head on morphine I said ‘What’s that? What’s the heavy?’ because I couldn’t think of the word [laughs] and he said “It’s [Name] it’s your daughter it’s [Name] because I was desperate to call her [Name] everyone else wanted to call her [Name] but obviously with what happened [Partner] thought we’d better call her [Name] [laughter]. So he sent everyone a text saying yeah [Name]’s here she’s fit and well, Joe’s having a few problems but and I sort of opened one eye and said you can’t call her [Name] she’s clearly a [Name] [laughter] he said but I’ve told everyone well you’ll just have to tell everyone again [laughter]. But yeah I was so off my head on morphine I don’t really remember holding [Name] for the first time, I don’t really remember seeing [Name] for the first time. which as a parent when you were so desperately worried that your child wasn’t gonna make it to have those little precious moments not there now it’s a, and remembering her birth, the one overriding thing I remember was ‘Would someone please just take her away’ which is awful I feel terrible. Yeah I then they had to put a uterine balloon inside to stop the bleeding so the next day I had to go back down to theatre to have that taken out. So I didn’t, and then I went to the, back to the delivery ward so I could have one more care so they could look after me and the nurses from special care kept bringing [Name] over for every sort of few hours for ten minutes to come and see me but I don’t, again I was so, on so many painkillers I don’t really remember seeing [Name] or, I have fleeting memories of looking at her and, you know, when newborns do that cross eyed thing and they can’t focus and I remember saying to one of my friends there’s something wrong with [Name] because she can’t see properly, forgetting in my morphine induced that, that’s what babies do they can’t focus. 

Yeah eventually I went back to the post-natal ward and I was put in a room thankfully with other mums that didn’t have babies with them, whose other babies were on special care. So the nurses were lovely they were really understanding because I mean on the ward you can still hear all the other babies crying was, it was awful at night-time, you know when your baby was in special care and these other mummies got to have their babies beside them and because I was so big and swollen from all the fluids that they put inside me I couldn’t walk so every time I wanted to go and see [Name] in special care I had to ask someone to take me which on a very busy ward isn’t convenient for other people so I had to rely on visitors a lot, my husband to come and take me to see [Name] in special care. 
 

Joe’s daughter had exomphalos*. She had not anticipated how hard it would be to feel a bond when she was separated from her.

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So the first few days of [Name]’s life I don’t even remember but then I remember starting expressing all this, you know, trying to get all this milk out for this baby that you’re not beside that you can’t really see and your body’s expected to have all these hormones and produce milk for it and it just doesn’t really happen because this baby’s not there with you you’re not actively being a mum and you’re not doing the nappy changes and you’re not doing the care and yeah it was just a, it was a really different scary and emotional experience that I hadn’t anticipated that part when I was pregnant and [Name] would have to stay in the hospital, I just assumed I would be able to stay with her. And we even went round the hospital and looked at where she’d be staying and I didn’t once think there’s no bed and yet I knew that after, there was a place that I could stay called [Name] House, which is in the grounds but even in my head I still didn’t think I would have to leave her, I felt, I knew I was going to stay there at night time I just hadn’t put two and two together that actually that means that you can’t be there when [Name] wakes up in the middle of the night. I think you’re so wrapped up in the medical needs of your baby and hoping that they, they’re gonna be alive at the end of it that I just had thought about little things, I hadn’t anticipated that the little things would be the things that would matter, it would be the mummy things that had been so easy to do with my other children, they would be the things that would matter that I missed out on that I didn’t get to do. [Tears up] 

* 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. 
 

Joe held her daughter without wires for the first time. She took her to the window to show her the stars.

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She got really severe oral aversion and wouldn’t let anyone near her face, she would scream every time you touched her face she didn’t even like being stroked or yeah because of the NG tube* and all of the, the needles and the, which is hard having a baby that, what do you do with babies you go and kiss then on their face and you touch them and you squeeze them and yeah [Name] didn’t want any of that. And because she was hooked up to so many monitors and drips and we couldn’t go more than, you couldn’t pick [Name] up and take her more than a meter away from the bed so [Name] had never seen sunshine, she’d never seen sunshine she’d never been outside she’d only ever been in hospital lighting and hospital air and when she was transferred to the [Name] Hospital it was in the middle of the night [laughs] I was like ‘Look [Name] stars’, [Name] was like [puts head to one side and imitates heavy sleep and loud breathing] ‘Oh, you can’t see the stars.’ So yeah there was this one lovely moment where I had [Name] in the bath so they had to take her monitor off her and she was having her NG tube changed so she had nothing on and I realised she wasn’t attached to any tubes so before the nurse came back in the room I, ‘Come on, come on [Name], come out’, I whipped her out of the bath and ‘Look’, and held her up to the window and said ‘Look it’s fresh air this is what the sky looks like, these are trees.’ Yeah it was lovely yeah it was a bit of a, [gasp] we are eight weeks down the line and this is the first time I’ve ever held my baby when I’ve not had to worry about a tube or a wire or a, and I can show her outside all be it from a fourth floor window of a hospital but yes this is what outside looks like.

*Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.
 

Joe said some of her friendships have survived, and others haven’t. She didn’t like people treating her children like ‘juicy gossip’.

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And how have your friendships kind of survived this?

Some have and some haven’t. My very close friends that I had to start with are still my very close friends that have supported me through thick and thin through the whole lot of it, through the, the every time I saw them antenatally I’d cry and every time they came to the hospital we all cried and when I nearly died we all cried and every time [Name] had to have a surgery done we’d all cry, and they’ve been extremely supportive. But then there’s been the other friends who beforehand were extremely supportive because [Name] wasn’t here and they weren’t presented with an actual human being who was poorly, it was the thought of a human being going to be poorly which is entirely different. Yes lots of ‘Oh I’ll come and visit you in hospital’ and you do once but three months later I’ve not heard from you, it’s as very lonely experience in hospital although you’re very busy with medical things your life stops. As a parent, not even as a parent, as a human being as a person your life stops, I don’t do anything now that I did pre-[Name] that is the same. Except going out on Thursday night that’s it but even then I go out on a Thursday night with my friends and they ask about [Name] which is lovely and it’s nice that they’re concerned about [Name] but sometimes you just get so sick of talking about medical things that if you just go ‘Oh yes she’s doing fine,’ if you give that answer that’s not enough they want to know the ins and outs and the grittiness because it’s like juicy gossip and my kid’s not juicy gossip but you don’t have to live with her so yeah. Yeah friendships have suffered so my relationship with, I have two mothers-in-law, my relationship with one of them will never ever be the same, yeah, because she just didn’t get it, she doesn’t get it and yeah. And then you get the ‘Oh your kid had an exomphalos* I saw that on One Born Every Minute’ [laughs] I know all about that because I watched it on the telly once for five minutes. Yeah so I’m surprised I haven’t bit my tongue off by now yeah I’m really good at arguing back with medical professionals now but I bite my tongue with most of my friends yeah.

* 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. 
 

Joe’s daughter had exomphalos. Early scans after she was born showed she had a rare heart condition as well that hadn’t been picked up in pregnancy. They were taken to the “bad news room”.

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[Name] was in special care and I was on the ward, being taken up there to see her and then she had a routine heart echo because a lot of babies have heart conditions that have exomphalos* but we weren’t prepared for any news at all because we were told antenatally her heart was fine. Turns out [Name] had one of the rarest heart conditions a baby can have, she had something called an aorta pulmonary window so that’s a communication between your aorta and your pulmonary artery which are the blood vessels that go into your heart and there was a big hole in between them so it meant that [Name] wasn’t gonna survive unless she had heart surgery, pretty major heart surgery on a baby that they hadn’t seen at the [Name] hospital for thirty years with one. So to be given that diagnosis when [Name] was five days old was horrendous, we were told that she might not survive, we were told that this little baby that we had who had, who we weren’t sure was gonna survive the birth in the first place and we’d had looking so healthy as healthy as an exomphalos baby can look it was crushing, really crushing news to know that [Name] not only had to overcome all of the problems with exomphalos but then had a heart that didn’t work properly and was really seriously damaged was horrendous news, absolutely horrendous. And they sit you down and they say, we went somewhere and we call it the bad news room because we could see all these other parents go into this and it was, they always call it the quiet room, and all these parents went in with the doctors and came out absolute messes and you could see it happening to all these other parents and thinking ‘Oh God I hope I’m never the parent that has to go in there’ and then we became the parents [tears up] that had to go into the bad news room. and when they tell you that your, that your baby isn’t gonna survive unless they have open heart surgery it’s the scariest thing in the world because I haven’t, you don’t know, anything about it, you don’t, you can’t prepare yourself for it, you can’t, if you’re not medical and you don’t understand a lot of it. And they said yeah “[Name] will just get worse and it sounds awful but we’re gonna wait for her to get worse before she has any surgery because we need her to grow as bit she’s too little to have surgery on.”

* 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. 
 

Joe felt her daughter wasn’t ready for her surgery and lobbied the surgeon to leave the operation for a few more months.

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I think my surgeon probably doesn’t really like me [laughs] I’m one of those mums that asks every question under the sun, will research everything, I don’t like surprises anymore we’ve had too many surprises with [Name] where I haven’t asked the right questions and we’ve just bumbled along, so I like to be prepared. So for closure surgery her surgeon initially thought, he felt she was ready in January but there really wasn’t that different between January and May but for [Name] it was a massive difference. In January I still had a very little baby and she was little with a massive exomphalos* not much space in size in her abdomen and very weak lungs. But he felt that she was stable enough to go ahead but he hadn’t asked anyone else he hadn’t consulted with the respiratory consultant, the cardiologist and he didn’t really like it when I pointed that out. I wanted to look at an option that they use a lot in America with exomphalos babies which is compression bound strength [compression bandages]. So instead of having surgery where you put it all back in in one go and hope it fits and not put a patch on which has all sorts of complications for rejection. You use stretcher bandages and you try very gradually to squeeze it in and he wasn’t having any of it because it hadn’t been, there was no specific, because there are so few babies with it there is no specific research that has been done on it so there was no quantifiable evidence it was just it works. So he, we had a meeting in his office where I said can we and he said no and I said can we and he said no and I said can we and he got cross with me [laughs]. So I went off and I saw all the other professionals involved with [Name] and they said well, ‘We see no reason why not.’ He didn’t want to do it because it wasn’t his field of expertise he hadn’t experienced it before and what he felt he did worked and it worked well. But I thought but there’s a non-surgical way I can do this and I’d like to explore the non-surgical way before I explore the surgical way. So anyway eventually he just said, ‘Well she’s your baby’ [laughs]. So between me and the community nurses and a lot of research and chat with American mums on the Facebook support group we sort of hashed up a bit of a bandage things for [Name] which she wore for a week and threw up constantly and so I’m thinking I wonder she’s throwing up constantly with a tiny little bit of pressure on her abdomen how is she going to cope with all of it one go. So I had this conversation with the surgeon and I had this conversation with the respiratory consultant and the respiratory consultant rang the surgeon and said, ‘Please don’t do it not yet she’s not ready she’s still too fragile and we think there’ll be too much repercussions on her respiratory system,’ so he say ‘Okay fine,’ another medical professional is telling me not to so I’ll listen to them.

* 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. 
 

Joe described bringing her daughter home. The first week was awfully hard, and she felt very isolated.

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So the community, the community nurse was aware we were leaving the hospital but all the other medical professionals that [Name] had in the hospital that we were supposed to get the community version of didn’t happen. So I spent the first three days after I was home ringing all these people thinking that’s my job that’s what I’m supposed to do when I get home. It wasn’t my job, I didn’t realise that yeah so that was, I found that really stressful, you’re at home with a baby who has more medical needs than you can shake a stick at, a 12 year old, a toddler and six health professionals a day coming in your house, you can’t think straight. Then you get a delivery of about thirty boxes for all your medical needs and I’m thinking ‘Where am I supposed to put them?’ And they all just piled up in the hallway, it was like a brick wall of boxes. And [Name] doesn’t sleep, [Name] sleeps about three hours a night and because she had gastroesophageal reflux disease she sleeps on my shoulder. So nobody slept, I remember coming home from hospital the first night with [Name] being really excited that she was home and thinking ‘Thank God you’re just home’ and then thinking, ‘Right it’s time for meds, I can’t remember where I put the piece of paper for the meds’ so I had to ring the hospital ‘What do I do about [Name]’s meds I know I only left about an hour ago but can you tell me what I’m supposed to do with [Name]’s medication please?’ And you’re just landed with this baby who has all these medical needs two hours before you were in the hospital where you could say to someone ‘My baby’s doing this can you get a doctor please,’ or ‘What’s that for’ or ‘My baby’s NG tube has come out can you put it back in please,’ and suddenly we had to do it all. When neither of us have barely any medical training whatsoever and you just get on with it and do it you don’t even think about it, you’re so stressed, you just don’t think until a year down the line. ‘God wasn’t that awful, wasn’t that first week awful?’ Nobody slept, nobody ate, cold cups of tea were left on the side for hours on end and it was almost a juxtaposed it had been so wonderful that we were at home with the other children and we were a family against all this awful medical stuff we knew we had to do and didn’t, I didn’t really feel that confident doing it, I was confident doing it in the hospital but its’s different being confident doing it an environment where you have lots of medical professionals to help you if you get stuck, to doing it by yourself at home, alone.

And [Name] wasn’t allowed out, for the first eight months of [Name]’s life we went down the street to Tesco’s and back and that was it, she wasn’t allowed to socialise with other children or other, because she was at such a risk of infection because of her lungs and her respiratory problems that the surgeon beforehand had told us wouldn’t exist, so we couldn’t take her out we couldn’t go anywhere, we had, we lived in between hospitals, we had about three or four hospital appointments a week, visits every day from medical professionals for about the first six months and we just didn’t go out we didn’t go anywhere, there wasn’t time.
 

Joe describes the day when the respiratory consultant gave her the green light to take her daughter out and about, but she still needs several appointments a week.

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We’d been back and forwards to hospital to A&E since but mostly it’s just been living in the house for the first eight months we couldn’t take her out anywhere and then that golden day when the respiratory consultant said, ‘Well you can maybe go to a little baby club with some other little babies.’ I said, ‘really we can take her out show her other kids and show her she’s not the only one in the world.’ Yes so we went and he said, ‘Yes but only with a few babies and no toddlers,’ and I thought well where does that exist. Right so I can’t- he’s telling me I can take her out but I can’t really [laughs]. So we went to baby massage and our lovely health visitor organised the baby massage for [Name] with only a couple of other little babies instead of the great big classes that it normally is so that was really special, that was lovely although trying to do baby massage on a baby that has a great big exomphalos* there’s not much baby left [laughter] to do massage on, but she enjoyed it and it was positive touch and it was yeah it was a really good way of getting [Name] used to having, having nice things happen to her. So yeah the period between then and now has just been lots of appointments with dieticians, speech language therapists, paediatricians every few months at the surgeon for reviews every few months with a respiratory consultant for reviews back to the cardiologist for reviews. In and out of the GP surgery more than my GP would like because [Name] has had every cough and cold going yeah bless him he’s quite sweet he quite often just says when it’s me on the phone ‘Oh I’ll come and see you, I’ll come out on my house calls’ and comes out on his bike. Yeah we probably average about three appointments a week for [Name] so it’s busy there’s lots of people involved with [Name]. When I did her disability living allowance claim form there was 21 consultants on the list.

* 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.
 

Joe feels her identity has been lost along the way.

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He does ‘team well’ and I do ‘team ill’ that’s very much the balance now, he gets all the kids who are well that day and goes out and does stuff and I keep the kids who are ill and need medical attention. With [Name] not being able to leave the house for eight months that was really tricky he went out with the kids and did stuff and I hung about the house with [Name]. And our conversations revolved around what are you doing with the kids today and what am I doing with the kids today and he didn’t particularly get that involved with, with hospital appointments and [Name of partner] wouldn’t have a clue how to ring the dietician and make an appointment, that’s my job mum does medical stuff, dad does going to the park, fun stuff. Which often I look and thing ‘Grrrr’ but then I’m such a control freak I can’t help it, yeah I find it really difficult to hand that over. Yeah our relationship, there’s glimmers of what it used to be like but because of the stress of having [Name] and having all the other children with their diagnosis’s at the same time, our relationship is, we’ve become, our relationship has become parents and not partners, we’ve kind of lost Joe and [Name of partner] along the way. I looked at our wedding photo the other day and I thought I don’t even remember what it feels like to be that woman, I know what it feels like to be the mum of a kid with complex needs but I don’t remember what it feels like to be the parent of a regular kid or even just me. Yeah I feel like I’ve lost my, there’s, lots of identity has been lost along the way, I feel like I’ve lost my identity and I’ve become a medical mum I feel like me and my husband have lost our, we haven’t lost our marriage that’s not the right thing to say because I couldn’t have survived through this without [Name of partner] he’s been my rock through the whole thing but we’ve definitely lost our spark. I go to bed at night and I want to go to sleep I can’t even be bothered to have a cuddle [tears up] and that’s wrong isn’t it because I know that fear is that I will have to get back up so if I don’t fall asleep when I’m in bed [laughs]. Yeah and finding people to look after your kids when they have complex needs it’s tricky yeah. And when we go out, we just talk about the kids [laughs] because we’ve not done something together for so long we have no common, our common ground is family life, of complex needs family so that’s what we talk about yeah. We need to regroup at some point when everyone’s feeling a bit better I think yeah. Tricky. 
 

Joe said her health visitor and GP had been amazing. They have suggested counselling but she doesn’t have the time, she is too busy caring.

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My health visitor has been fantastic and my GP has been really good but they can only be good to a point, you know, my GP has said, ‘Would you like some counselling?’ and in the same breath he said, ‘Can you fit it in? It’s just going to be another appointment to you?’ You’re right I haven’t got time to talk to anyone about how I feel because I’m too busy looking after my kids and their hospital appointments, I just don’t have time. So I tried some antidepressants and they just made me feel like I’d had three glasses of wine inside me permanently, I didn’t want to have to try and medicate that way anyway but it was such a stressful time. And there was so much going on I thought something’s gonna give and it’s going to be my mental health and I thought I’m the only one holding all this together because my husband gets to go to work for a break and I’ll say to him ‘Can you ring the Community Nurse and ask her this that and the other?’ and he’ll go ‘Who?’ or the dietician will ring and speak to [Name] and I’ll not be in and he’ll forget to tell me [laughs] or he’ll say ‘A lady rang to talk about [Name],’ ‘And?’ ‘Oh I don’t know I didn’t, just someone rang, they said they’d ring back.’ [Laughs]. So yeah if I’m not here doing it, it’s yeah and so I felt for a long time I struggled and I struggled for a long time and you’re on the hamster wheel of not having time to, to do anything to help yourself because you’re so busy helping everyone else so you medicate with a glass of wine in the evening. Or you medicate with a coffee and a chat and a really good whinge at your friends who eventually get sick of hearing about it and your relationship with your husband turns into not having a conversation turning into having a snap at each other. And you snap at your kids because you’ve had no sleep and your patience wears very thin because you’ve been up since midnight and it’s 4.00 in the afternoon and you’re so tired that you just want to go to sleep really, actually. It’s, yeah post-traumatic stress is definitely something I’d say I definitely suffer from it, I know my teenage daughter definitely suffers from it cos she can’t stand to look at [Name]’s tubes, she can’t stand to be in the room when the children are crying. Yeah there has been days where I, where I’ve gone ‘Enough. If I don’t leave this house for five minutes and go and get some fresh air I’ll actually not come back’ because there’s so much in your head and the times where you do have five minutes to sit down and relax you’re on the exomphalus support group checking up on other people’s kids, asking questions about your own kids on the hyper mobility site asking what you do about sublux thumbs for when the school won’t listen. So the time when you do have as you’re down time, my respite care, I spend most of my respite care running to and from school dealing with my other children. What do you do, I don’t know what you do, you just struggle through life until it improves a bit I suppose.
 

Joe found it difficult having her toddlers visit her in hospital, but also hard to leave them at home if she visited.

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His work have been brilliant, he used all of his holidays and took an extra hour off each day using up his holidays. So my parents, bless them, the kids were farmed left right and centre, my parents and my in-laws had the kids before school and after school in that in between period and before and after pre-school. [Name of partner] would finish work at half three, go and get, bring the, get the kids from home and bring them down to the hospital to me and we’d sit and have tea together in [Name] House then we would go and visit [Name]. But again it’s really stressful because you never see your husband to talk to, there’s really important medical decisions that you need to have a conversation about and you can’t because the kids are there and they want to go to the play room and they don’t want to sit in a room with a baby in a cot that does nothing that’s hooked up to all these wires but [Name of partner] does. I’m so stressed that I found it incredibly difficult to be faced with a demanding toddler in a hospital situation that I just want them to leave, which is awful, it’s awful to think that because I couldn’t cope with having the entire family descend on this quiet little peaceful room I had with the baby. It was really dif- there was lots of meltdowns in the special care unit, lots of tears, I tried coming home at the weekends, me and [Name of partner] would swap he’d go to the hospital and stay with [Name] and I’d come home but it didn’t work because the kids found it harder me leaving the house than them leaving me in hospital.
 

Joe said that although the family were traumatised by everything they had been through with their baby, it has brought them a sense of togetherness they didn’t have before.

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Home there was a lull of it being really- lots of medical people coming in the house and my toddler didn’t cope with it at all she’d, they’d see them coming in doing something that made [Baby] cry and then leave. So every time someone came in the house [Toddler] would say ‘Go away, go away she’s my sister, she’s my sister don’t touch my sister.’ So when you’re in the house by yourself and someone needs to do something medical with the baby and you have a toddler to placate who do you go to do, to the crying baby who’s having a painful experience? Do you cuddle the toddler who’s not coping with it because she’s witnessing it? It’s pulling yourself in two and you can’t do it for too long before it sends you nuts.

And everyone is traumatised completely, you think leaving hospital is a bonus, you think it’s gonna be nice at home but the same horrible stuff happens in your house as it does in hospital it’s just your kids witness it as well. And that’ll what it felt like for quite a while until all the visits lessened off and we managed to do [Baby]’s NG tube* and things out of sight of the other children and, it was a really stressful time, incredibly stressful time because you’re at, although you’re at home you’re never really at home, you’re visiting the hospital so many times a week that you live on the road and you have so much medical equipment to take with you. And [Toddler] was being farmed out to parents and friends left right and centre because I didn’t want to take her to the medical appointments because she’s just gonna, you can’t take a toddler to hospital for hours on end it’s just not practical. So for about the first year of [Baby]’s life I feel like I didn’t see [Toddler] or [Oldest Daughter]. [Oldest Daughter] goes off to school comes home, [Toddler] goes off to pre-school comes home and quite often I’m not here, we’ve had an emergency and had to go to hospital for two days, so where’s mummy gone, yeah. It’s been really tough on family life but equally we’ve had days were we’ve sat in the back garden and everyone’s been out and we’ve gone ‘Ooh look for five minutes we’re just a normal family’.

My oldest girl now I think is definitely more aware of kids with extra needs, the ones in her class at school. She goes to a young carers group and there was a girl in her class there who is in [Oldest Daughter]’s words the class bully and this girl was there and I said ‘Well [Name] maybe if she has a sibling at home that has extra needs maybe that’s why she finds it hard to control herself, maybe she doesn’t always have, her mum doesn’t always have time for a cuddle because the other sibling comes first.’ So it’s, and do lots of fundraising, the heart unit and for [Name] House and special care unit and things that’s been a really positive thing that we could all get involved in and do something positive afterwards that’s all bonded the family. [Oldest Daughter] went on a colour run obstacle course yesterday to raise some money for the children’s heart unit fund so I think it’s given the family a sense of, what’s the right word, like a sense of belonging together in a sense of being appreciative of the things that we would never have appreciated before. You know we used to have people come knocking on the doors like can I have some money for the Dogs Trust no you can’t have some money for the blooming Dogs Trust, yeah of course you can have some money for the Dogs Trust yes of course you can have some money we give away money all the time now [laughs]. But because we realise how important it is, before charity was just something you did because you felt you should it was almost like a guilt thing put it in the bucket at Tesco’s but now you can, we see a reason around it because we’ve experienced it and we are that, the people who needed those charities. Yeah so it’s, it’s nice to be able to give something back when something so awful has happened and it’s nice to be able to support other families that have been going through the same thing. I took some flowers to a mum and just left them in her room at [Name] House the other day. A lady who’s in hospital. So it’s nice just to be able to, the little things that people did for us when we were in hospital we can pay it back and that’s been lovely.

* Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.
 

Joe was frustrated that health professionals were dismissive of knowledge she had gathered online.

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The strength to talk to the medical professionals as well, I wonder whether that comes from.

Yeah.

That, that knowledge that shared knowledge yeah.

It does because you can put on, when I was in hospital with [Name] and all the medical professionals didn’t know why she was shutting down, they hadn’t at this point figured out that it was her reflux, you can put on these are the symptoms whose kids had this and you’ll get ten parents who’ll go, ‘Have you asked this, have you asked that, have you asked this, is it tracyemacia have you done this and my kid had this experience and they ended up having that.’ So yeah the surgeons need to learn how to not go ‘Oh the internet’ every time you suggest that someone has [laughs] mentioned this to you [laughs] because it’s not just Googling symptoms and getting an answer it’s asking a forum of parents who’ve been through exactly what you’re going through. It’s like sitting in a room with 500 parents whose kids have got the same experience and had the same problem who’ll all have widely different experiences of it and the surgeon just going ‘I’m not listening to any of you lot,’ what surgeon would stand in a room of parents and do that but because its’s on the internet it seems to be acceptable to go ‘Tut, Facebook.’

Yeah, but you’d never sit in a room full of 500 parents and if you said, ‘What are, what could these symptoms be’ and ten parents put their hands up you’d never go ‘Oh, I’ll ask but I’m not listening’ [laughs] but it seems acceptable in an office or at your child’s cot side when you go ‘Some of the other exomphalos* parents have experienced this with these symptoms can we investigate it?’ and they go ‘Oh no, definitely can’t be that, can’t be trachymalecia, I can’t hear any stridor that’s because she had vocal cord palsy [laughs].

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop 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.
 

Joe found a parent who lived close by whose daughter had also had an exomphalos a few years earlier. She had met her online, where she felt people knew her better than her actual friends.

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So to have another parent who lives just down the hill who’s been through exactly the same as we’ve been through and all those emotions and feelings and knows what it’s like when you say ‘Is my baby gonna live, will my baby die?’ [tears up]. To say, I sat down with my husband and I planned my baby’s funeral last night and she gets that and your friends don’t get that and your friends have gone ‘God why you have done that, she’s not dead.’ [Laughs]. To have someone that gets the little things to get what it’s like to be on special care and to get what it’s like to have the flash backs and the- to know what it’s like having older kids that you have at home that you need to look after too and yeah. Or to whinge that your husband’s gone [Laughs]. What more medical needs can we have in this house [laughs].

So do you see her for coffee or do you just meet her or-

Yeah, no we don’t meet for coffee we’ll meet for gin and wine [laughs]. 

Good for you, good for you.

Yeah sometimes we meet for coffee if the kids are there.

But you stumbled across her.

I did yeah, I did.

And how far away does she live?

She lives in [Town]. Yeah. Well, you know her [laughs]. Yeah and I looked after her daughter at the pre-school and I knew that she’d had problems with her abdomen at birth but her mum really didn’t go into much about it because it wasn’t a problem. It, it wasn’t part of her medical needs at the time so she didn’t really go into full detail about it and when I saw her beautiful face pop up on the screen I said, ‘Oh gosh the relief, quickly Facebook her, bleh, I‘ve just been diagnosed with this, I know you only know me as a pre-school leader but help.’ Yeah and the friendships the day we met up in [City] with people that I’d only ever talked to on the internet, who are, like your online friends who you feel like you know better than your actual friends who you see all the time because your children have been through this experience together and you know as a parent what it feels like to parent them. The support groups are so important because you don’t just then Google and get the horror stories you Google and you get the support groups and you get the faith and the hope and the knowledge that it works out sometimes, sometimes it doesn’t but sometimes it does, yeah. 
 

Joe’s message was that sometimes mum knows best, and you should trust your instincts. And that you have more strength than you realise.

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Think carefully before you take your medical professionals’ view as the only view. Use your gut instinct and I think always live with a bit of faith that eventually one day it will be alright [laughs] I’m still living it. Yeah it is amazing what you cope with that you would never ever have anticipated beforehand that you could cope with. Human strength of will is a phenomenal attribute and you have it in buckets as a parent without realising it. [Tears up].
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