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.
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.
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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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.
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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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.
Joe’s daughter had exomphalos*. She had not anticipated how hard it would be to feel a bond when she was separated from her.
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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* 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.
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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*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’.
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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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”.
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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* 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.
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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* 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.
Joe described bringing her daughter home. The first week was awfully hard, and she felt very isolated.
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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.
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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* 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.
Joe feels her identity has been lost along the way.
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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.
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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Joe found it difficult having her toddlers visit her in hospital, but also hard to leave them at home if she visited.
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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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.
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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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.
Joe was frustrated that health professionals were dismissive of knowledge she had gathered online.
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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.
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 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.
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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