Victoria
Age at interview: 31
Age at diagnosis: 31
Brief Outline: Victoria’s first child arrived very early, at just under 26 weeks gestation. He was cared for in neonatal intensive care. He contracted an infection in his bowel and several weeks later required surgery to remove some scarring left over in his intestines. He is now home and thriving.
Background: Victoria is a nurse, managing a care centre. She has one son.
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Victoria was over the moon to be pregnant for the first time, after some fertility worries. Everything went well for the first few weeks, but at 25 weeks, Victoria started experiencing contractions. Doctors managed to administer steroids and postpone the birth for a few days, but Victoria’s son was born very early, at 25 weeks and 5 days gestation. There were 18 people in the room when he was born, and he was immediately taken to neonatal intensive care (NICU)*.
Victoria was able to go and see her son a few hours later, and embarked on what was going to be a long “NICU journey”. Her son did well for 5 weeks but then developed an infection of the bowel, called necrotising enterocolitis (NEC)*. He was very poorly and put on antibiotics to try and cure the infection. He was sent to a hospital with paediatric surgery facilities, in case he needed surgery to remove the infected section of bowel. He was there for 4 weeks and the infection improved, so he was sent back to the local hospital where he had been born. However, a week later, his stomach was distended again and everyone was worried he had developed NEC a second time. He was transferred back to the specialist hospital, where they established that it was not an infection causing the problem, but post NEC strictures, or scar tissue in his bowel from the infection that were restricting his bowel. He needed an operation to remove the scarred area.
Her son was 10 weeks old. Victoria and her partner were prepared for their son needing a stoma for a few months. But when he came back from the operation, surgeons had managed to do the operation without the need for a stoma bag. Her son recovered enough to be transferred back to the general hospital, and then finally home. Victoria found it very frightening being at home with him at first after 17 weeks in hospital, with experts on hand at all times. But she was growing in confidence and delighted to have him home. However, she was still very busy with various follow up appointments for him – neonatal consultant, surgeons, eye, heart and respiratory specialists – he was 24 weeks old at the time of the interview and doing well.
* 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.
*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria was able to go and see her son a few hours later, and embarked on what was going to be a long “NICU journey”. Her son did well for 5 weeks but then developed an infection of the bowel, called necrotising enterocolitis (NEC)*. He was very poorly and put on antibiotics to try and cure the infection. He was sent to a hospital with paediatric surgery facilities, in case he needed surgery to remove the infected section of bowel. He was there for 4 weeks and the infection improved, so he was sent back to the local hospital where he had been born. However, a week later, his stomach was distended again and everyone was worried he had developed NEC a second time. He was transferred back to the specialist hospital, where they established that it was not an infection causing the problem, but post NEC strictures, or scar tissue in his bowel from the infection that were restricting his bowel. He needed an operation to remove the scarred area.
Her son was 10 weeks old. Victoria and her partner were prepared for their son needing a stoma for a few months. But when he came back from the operation, surgeons had managed to do the operation without the need for a stoma bag. Her son recovered enough to be transferred back to the general hospital, and then finally home. Victoria found it very frightening being at home with him at first after 17 weeks in hospital, with experts on hand at all times. But she was growing in confidence and delighted to have him home. However, she was still very busy with various follow up appointments for him – neonatal consultant, surgeons, eye, heart and respiratory specialists – he was 24 weeks old at the time of the interview and doing well.
* 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.
*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria’s premature son developed necrotising enterocolitis (NEC). She found the specialist hospital large and overwhelming after the smaller hospital where he had been cared for previously.
Victoria’s premature son developed necrotising enterocolitis (NEC). She found the specialist hospital large and overwhelming after the smaller hospital where he had been cared for previously.
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* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria was devastated when she thought her son had NEC again. He hadn’t, but he needed surgery to remove the scar tissue from his previous episode.
Victoria was devastated when she thought her son had NEC again. He hadn’t, but he needed surgery to remove the scar tissue from his previous episode.
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* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria’s baby was born prematurely and developed necrotising enterocolitis (NEC). She felt she had to assert that he was her baby, and it was important that she washed and dressed him.
Victoria’s baby was born prematurely and developed necrotising enterocolitis (NEC). She felt she had to assert that he was her baby, and it was important that she washed and dressed him.
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* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria described how expressing became her life. But it was hard to develop her breastmilk supply when she could not be near her son.
Victoria described how expressing became her life. But it was hard to develop her breastmilk supply when she could not be near her son.
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And the breastfeeding did that just tell me about how important that was.
Massively like it was, I never realised that you can breast, I never realised that you can get milk out really so when they said ‘Do you want to breastfeed’ I was like ‘Yeah’ cos I just presumed that my milk would come in, I don’t know what I thought actually, I didn’t realise that it would come then. So I was like ‘Yeah I wanna breastfeed but how am I gonna breastfeed will it kick in,’ I don’t know for some strange reason I thought that my body would kick in on August and I’d just get all this milk, I didn’t, I don’t know why it must have just been from a baby moment I was having I suppose. But when, so when I started to get help to bring my milk out that was majorly important expressing became my life [laughs] really every three hours and once overnight and I did that solidly for like four months. The odd night I let myself sleep through cos you’re just exhausted but yeah pretty much did that but obviously with stress when you’re tired and if your diets not great, if you haven’t drunk enough it does affect your flow, it did me. And I tried to get my flow back up but it was just, it was just hard, cos I’d been expressing for five months, you know, by now you should be weaning your baby technically and plus it’s not just expressing, it’s not just like a mum that’s had a newborn and she’s expressing because she can’t breastfeed at that point, I haven’t got Bobby’s smell I haven’t got Bobby there suckling and doing all the things that baby’s do to help you produce. And so I’m having to sit down here where I’m now, at 2 ‘o’ clock in the morning with two pumps, freezing cold, [Partner] will have made me a cup of tea trying to, with a picture of Bobby up there, but you can’t do that anyway cos you know that he’s poorly so you’re upset and you’re like trying, it’s just, it’s, it’s just a whole different chore but you wanna do it cos you want him to have the best but I thought I would have had so much milk it would have done him until about two but we’ve gone through literally like five months with the expressed pumped milk, I had a freezer full my mum had a freezer full, we’ve gone through it in like six weeks, it’s just gone. And literally we’ve had to like slowly wean Bobby onto formula but yeah. I mean it’s like, I breastfed for a good two weeks, not solidly because obviously I wouldn’t be there overnight and they had a bottle to feed Bobby overnight but I just couldn’t, I couldn’t get my flow up enough to be able to breastfeed him, I’d love to but I would have loved to have breastfed Bobby right up until he was weaned but unfortunately I couldn’t so.
Victoria described how health professionals became like a second family during her many weeks in hospital with her premature baby.
Victoria described how health professionals became like a second family during her many weeks in hospital with her premature baby.
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*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.
* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
Victoria found it very hard handing her son over to surgeons who were going to open his tummy.
Victoria found it very hard handing her son over to surgeons who were going to open his tummy.
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Victoria’s son had surgery for post-NEC scarring. The surgeon told her the operation had gone really well.
Victoria’s son had surgery for post-NEC scarring. The surgeon told her the operation had gone really well.
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Victoria said she came down to earth with a big bump when she came home with her son. Being at home was so different to being in the hospital
Victoria said she came down to earth with a big bump when she came home with her son. Being at home was so different to being in the hospital
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And how many weeks has that taken you to get to, how many weeks have you been home?
Bobby’s been home since the 20th August so he’s been home just shy of two months so it’s taken me two months really, actually it’s probably the last kind of four weeks that I’m actually started to enjoy Bobby really and go to baby groups and do bits and bobs that you do, you know, Baby Sensation and Sing Along with Baby and stuff like that and going out properly and yeah.
Yes and no I mean getting home it’s like, like learning to drive a car you don’t learn to drive a car until you’ve actually passed your test and go out on your own do you. So it’s kind of that’s, that’s how it’s been cos I’ve learnt myself to know how to deal with Bobby and, you know, cos being home and being in hospital is two different things you’re going out you’re getting up you’re doing different things, you know, it’s very, it’s very different to being in a hospital environment where if you’ve got to go off, you can say ‘Oh, can you just feed Bobby for me or,’ you know, it’s very different cos Bobby’s, Bobby’s here full stop so, you know, it’s, it’s a whole different ball game, you learn to, yeah you learn yourself really, there’s no kind of right or wrong way I don’t think really cos every baby’s different they all have their own, their own different needs, you know, like Bobby does, you know.
Victoria’s son was born early and she has found it emotionally very hard coping with him at home.
Victoria’s son was born early and she has found it emotionally very hard coping with him at home.
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Yeah and you were talking about the anxiety and the CBT, do you feel that now you’re less anxious with him and that you’re getting more confident or?
Yeah, yeah I don’t feel, I don’t feel as anxious with him and there are certain times where I just probably need to get myself a check and think ‘Oh is he alright,’ you know, and you hear certain things but I think it’s all, I think you’ve got, I think sometimes you’ve just got to get a grip and look at yourself and look at him and I forget to do that sometimes and like [Partner] ‘Will say will you just get a grip’. Because I’m like ‘Oh my god, oh is he alright, do you think he’s alright’ and you actually get yourself into a state where I think sometimes you’ve just got to stand back and look at him and think actually, you know, you’ve got good colour he’s looking at you, he’s feeding, you know, he’s doing all the things he should be doing so what are you worried about, you know. But yeah I do think it is getting easier but then probably something will happen and I’ll be back to stage 1 again.
So you feel like it’s very easy to go back to that stage?
I think if Bobby got poorly I think and he had to go to hospital which is potentially inevitable at some point, I think my anxiety would go back up again but I think, I imagine that every parent if their child has to go into hospital or is so poorly that they need intervention I imagine they would probably be very upset and anxious about it as well. But going into hospital is not a strange thing for us really, it’s the norm.
Victoria felt very supported by the woman she was seeing for therapy to help her come to terms with her experiences in hospital with her premature baby.
Victoria felt very supported by the woman she was seeing for therapy to help her come to terms with her experiences in hospital with her premature baby.
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And where have you got support from?
Our families have been amazing you know, without families I think we would have been… I think without our families because [Partner] had to work I’ve got to say my mum was absolutely amazing through it she’s been here for both, you know, for both me and [Partner], she’s great with Bobby now. She was kind of like my right hand man because obviously [Partner] couldn’t get the time off and she’s been great. But families in general have been absolutely amazing anyway - so they’ve been absolutely amazing our families. We’ve had a couple of good friends that have been the I’ve got to say the support group was absolutely great because they knew exactly what we were going through, they knew, they’d been through it themselves, you know, it was, they were amazing really. The staff on the units were amazing, you know because they knew what was going on with Bobby they used to tell me off for monitor watching, they’d be like ‘Right, will you stop watching the monitor, I’m actually gonna turn that monitor away if you keep looking at it.’ Because you do get obsessed with them, it’s so, you do get obsessed with them. But yeah, yeah it’s been, we’ve, sometimes it’s quite a personal journey to be honest because you, you, you know, the only other person that knows how you feel is, is [Partner] or you know and so yeah.
Victoria was constantly looking for someone who could say, yes your daughter will be fine, but realised the doctors couldn’t reassure her, they didn’t know.
Victoria was constantly looking for someone who could say, yes your daughter will be fine, but realised the doctors couldn’t reassure her, they didn’t know.
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And do you ask, do you ask the question and they say ‘I can’t tell you’ or is it just?
I think at first we did and like ‘is Bobby gonna come home’ and stuff, and then we kind of realised they, they can’t tell us that kind of information because they don’t know, you know, Bobby was very lucky to recover from NEC and, and come out with what he come out with and be here now so. And as I was saying there’s been other babies that haven’t been quite as lucky as Bobby but, you know, we, we’re very lucky that we had a very dedicated team. [Women and children’s hospital] were amazing they’re very busy, it’s a very busy unit and it’s hard for parents because the nurses change all the time, it’s very busy, the doctors change all the time, you know, but it’s, it’s very, it’s that’s the specialist kind of unit it is because they do take very poorly babies because they’ve got surgical there.
Victoria’s son was born prematurely and developed necrotising enterocolitis (NEC). Stopping work early meant she lost 4 months full time wage and much of her maternity leave was spent in intensive care.
Victoria’s son was born prematurely and developed necrotising enterocolitis (NEC). Stopping work early meant she lost 4 months full time wage and much of her maternity leave was spent in intensive care.
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Yes I was, I had to go on maternity leave the day after I had Bobby which was difficult, I know you’re probably aware that there’s a big petition at the moment to try and end try and increase the amount of leave that mums have and get paid longer for maternity because theoretically Bobby came home in August and I’ve got to start thinking about going back to work in January so that’s four months with my baby who was born 14 weeks early and so, you know, kind of five or six months of my maternity leave was spent in hospital so, you know, that’s no time, it’s not enough time. You know, cos my days were spent, not every day is spent having quality lovely time, going to baby groups going out for walks spending family time with [Partner], some of that’s spent in hospital, you know, and Bobby has between, between two and five appointments a week and he has done ever since he’s come home. This week he had 1, 2, 3, 4 appointments, we only cancelled a couple because of circumstances, next week Bobby’s got three or four appointments and you know, its’s kind of like that every week really, you know, we have physio appointments, we have dietician appointments we go and see Bobby’s surgical team, we go and see Bobby’s consultant his neo-natal consultant. We’re going for a cardiology appointment, you know, we‘re going to [Women and children’s hospital] we’re going to [smaller hospital], we’re going to [City] hospital, you know, it’s full on.
Despite warnings, Victoria went online when her son was diagnosed with necrotising enterocolitis (NEC). She found mixing online research with what staff were telling her was helpful.
Despite warnings, Victoria went online when her son was diagnosed with necrotising enterocolitis (NEC). She found mixing online research with what staff were telling her was helpful.
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Victoria said it was really important to get a support network around you, if you can.
Victoria said it was really important to get a support network around you, if you can.
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