Zoe

Age at interview: 24

Age at diagnosis: 22

Brief Outline: Zoe was pregnant with her first child, who was diagnosed with gastroschisis*. Zoe was referred to a specialist surgical hospital 3 hours away. Her daughter was born at 37 weeks and had her operation when she was 6 days old.

Background: Zoe is a nurse. She lives with her partner and has one daughter.

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Zoe was expecting her first child. The 12 week scan showed that her daughter had gastroschisis*. Zoe was scanned regularly and was then referred to a hospital with a specialist paediatric surgical team at 28 weeks. At the first visit, she met with the surgeons and neonatal nurses who explained to her what to expect after her baby was born. The specialist hospital was a long way away, a three-hour drive. Zoe found the rest of her pregnancy very hard, as there was so much uncertainty about how her baby would be when she was born. She and her partner also found it hard not knowing why her daughter had the condition.

Zoe was induced at 37 weeks and she was able to see her daughter only briefly before she was taken to neonatal intensive care (NICU)*. As expected, her daughter had to be transferred to the children’s hospital, which was separate to the maternity hospital, so Zoe did not see her daughter for another 12 hours. She was set up in NICU with a silo and assessed. Surgeons were keen to operate on her bowel as soon as possible, and she had her closure operation when she was 6 days old. The operation was relatively quick – just a couple of hours – and successful, although Zoe’s daughter was very distressed for the first few hours as she was in a lot of discomfort and pain. But she recovered well.

Because the hospital was so far away from home, Zoe was given a room in the Ronald Macdonald house, where she stayed for the full month that her daughter was in hospital. However, her partner had to go back to work and was only able to visit at weekends, so she spent the weeks on her own, with just the occasional visitor. Soon after surgery, her daughter was well enough to start trying to have very small amounts of breastmilk, and was weaned off total parenteral nutrition (TPN)* after 18 days. Doctors built up the volumes of milk very slowly, checking that her bowel was working well, and could cope with the milk. She was soon transferred to the general paediatric ward and after a month she was well enough to go home. Zoe’s daughter was 19 months old at the time of the interview. She has had a couple of follow-ups with the surgeons who are very pleased with her progress. 

* Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which, the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

*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.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Zoe didn’t want her daughter to be alone, so she sat with her every hour she could. It was hard to remember to look after herself as well.

I felt that I adapted to the whole like new world kind of quite quickly and quite well. I’d obviously had that preparation of knowing where I was going but I sort of don’t know, it’s a difficult one because you’ve got no choice but to deal with it, where that’s your, if you don’t deal with it then it’s obviously something wrong with you like that’s your baby and you’re gonna do everything you can for them so that’s all I could do for her was sit next to her bed, so that was all I could do. You don’t want her to be alone either so that’s what we had to learn was how to look after ourselves as well, like that’s one of the things we found difficult with was if we don’t go and have a meal then we’re gonna starve but yet we can’t leave her and that’s one thing the nurses were really good at they told us to go away and have dinner like, look she’s sleeping she’s fine if anything happens we’re gonna phone you and it would be like you can just walk away. When you’re at home you can’t walk away you have to deal with a crying baby if you’re eating or not but yeah looking after ourselves was hard just so we could look after her and once we kind of realised that if we didn’t look after ourselves then we can’t look after her either and that’s when we realised that you’ve got no other choice. And you’re worth it every day [laughs].

Zoe said that in the midst of all the worry, there were positive moments to cherish.

And is there anything you wish you’d had known then that you know now?

Yeah how easy and how hard it can be like not just, what can go wrong but people I think you need to be aware of what can go right and how little, how little things such as like taking a syringe of five mils of milk how amazing that can actually feel. Because you just get warned about everything else like not the, the minor things and what everyone else thinks is the minor things cos to me they were all massive and not that she knows, but to see how she enjoys things like milk for the first time ever is an experience and a half and I wish that like you kind of cherish these moments in like pictures, you just can’t. And for [partner] to wait six days to even hold her was like, I mean that, that made me cry, so it’s those little things that people don’t realise that can mean the world to you and everyone else takes for granted, cos I mean like, my mum came down and visited us a few times, but she didn’t get to hold her own granddaughter for over a month and so did hardly any other family member like people just get to go round and see a new baby for the first time and just be able to hold them but when you’ve been in NICU* for that long and other wards after that it’s, yeah they’re massive. So, but the second time I think being in hospital was definitely harder cos it was for longer and, I mean, it was double the length we were in the first time and we were warned that we were gonna be in with the gastroschisis* for two months, I don’t think I could have dealt with that for two months like the first time round and never been home but we were lucky after a month. And we actually went down to the NICU to thank them the day that we were leaving and the charge nurse who we got to know really well like ‘You’re not leaving are you?’ and we were like ‘Yes she’s getting discharged this afternoon,’ she was like ‘No way,’ was like ‘Yeah, yeah we’re getting to go home,’ and she was like ‘That’s amazing,’ and she actually told us that a little boy with gastroschisis who was discharged after 13 months so it just shows how different people’s stories can be. But yeah the positive story should definitely be advertised as well as the bad points because it just makes you more nervous I think, yeah.

* 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.

* Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which, the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

Zoe remembers the generosity and support she received from the nurses in NICU. They sent her off for meals, and would sit and chat with her in the long hours she spent at her baby’s cot side.

Obviously being a nurse I’ve seen loads of hospitals I’ve been, I’ve never worked in ITU but I’ve experienced it, I’ve walked around them and when I did my training. So the hospital certainly didn’t daunt me but seeing a tiny little baby in one did especially being my tiny little baby and it was the first proper look I got of it as well so it was quite emotional, really quite emotional. And the staff were incredible like they were probably the some of the nicest nurses I’ve ever met in my life actually they were amazing. They were very, very supportive they could tell me all about her condition yeah they were fantastic I couldn’t fault them. So yeah the whole experience in NICU* we were, she was in there for 13 days, she was in there for 13 days so we got to know them quite well, we got settled in really well were told we could do what we wanted within reason obviously so yeah it was an experience and a half. 

And were there things that the surgeons or the nurses did that or that didn’t stand out that you want to mention?

Their kindness and generosity and the fact that they actually supported us as well in a sense of you need to go home and eat that made the world of difference because initially we didn’t think we could ever leave her and that, that was important to us as well and the fact that when she was sleeping they’d just sit there and have a chat with us, doesn’t have to be about her, but just like general things about like deals on at the supermarket and things like that. And we obviously asked them quite a few times like, like babies with this how long do they have on average staying in NICU for in the hospital and things like that. And they always told us we can’t tell you because every baby’s different, but the fact that they were always honest about it that was the key thing, I mean, one nurse said that ‘Oh don’t expect to be out any time soon,’ we were like ‘Right okay,’ at that point she wasn’t doing bad, she wasn’t doing good just she was stable so she was kind of going on two months like we’d been told initially but so when we did find out about like oh yes she’s going home this week after just being in for just over three weeks at this point we were like yeah, yeah we don’t believe you, and that’s why we didn’t want to believe them until we were actually walking out the door with her and driving away so they couldn’t call us back.

But other than that, I think that was all, but the nurses were always there and they were always asking how are you doing it was never a time I didn’t walk in they said oh how are you doing today but I think the nurses made it possible like they were just amazing and the doctors as well like they were really good, they gave really good information they were there answering any questions and anything that asked them they were always really honest with their answers and honesty was probably the best and kind of got us through it because if they lied to us about something then we would have just been struggling to get on with it, like why is she not doing this, or, why is she not doing that or why is she getting treated different to what you said they were going to do and they, they didn’t take her off any medication too soon either. But other than that one incident with the pain relief everything was fine so, but that did annoy us and we told them that annoyed us and they apologised so it was alright, yeah.

* 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.

Zoe’s daughter with gastroschisis was in a hospital 3 hours drive from home. She could stay over but it was lonely during the weeks when her partner was back at work.

Normally in NICU we used to get up first thing in the morning quite, quite early round about half seven, eightish, we would both get showered and we’d head over to the hospital and we’d stay there until the nurses had their handover and during that time we weren’t allowed to be in like the ward. So while they had their handover we’d go for breakfast and then we’d basically sit there until we were hungry and that was about the only time we’d leave is if we need the toilet or to get food. And we were normally there until sometimes ten, half ten at night so it was a long day but it was worth it. Couldn’t have done it any other way actually.

And you mentioned a couple of minutes ago that [partner] went home after she came out of NICU so how did you manage on your own all over 13 days?

I don’t know [laughs]. He came down every weekend so he came down on the Friday evening and went back on the Sunday night. That was, those days seemed to go a lot quicker than when he was there and it was amazing seeing them bond as well so because those first few days she wasn’t always aware of an awful lot she was on medication that was basically making her sleep some days so I loved it when he was back with us it actually made us, we were more like a family then rather than just me and he hated being away so we’d luckily with modern technology we could do facetime and stuff as well so, that was quite good.

Yeah.

Yeah I don’t know how I coped.

And did anyone else come down and visits you in those days?

Yeah, yeah I was, I did my training in [city] so I had friends that come, so a couple of friends during the week and then my mum came down at one point as well so.

Okay.

That meant a lot.

Zoe said the nurses on the unit were amazing and made getting through it possible.

Every mother and father in the NICU had got a session with this, I’m sure she’s a psychiatrist or psychologist can’t remember which one so we met with her, so she invited us to have an appointment with her on the ward so we weren’t taken away from [daughter] and we just sat and we just spoke about everything and at that time I said to her I was like ‘I’m worried cos I don’t feel I might be able, I might not be able to cope when [partner] leaves and goes back home to work’ and so she gave me her number at that, I didn’t actually ever get round to phoning her because I didn’t feel the need to, but to know that I had that person in [city] which is miles away from home was really good and really handy and there was one time I was like shall I give her a phone, I was like no I’ll give [partner] a phone instead and that was, he actually managed to answer his phone at that point but if he didn’t I probably would have phoned her just to have a chat with somebody about what we were going through. But other than that, I think that was all, but the nurses were always there and they were always asking how are you doing it was never a time I didn’t walk in they said oh how are you doing today but I think the nurses made it possible like they were just amazing and the doctors as well like they were really good, they gave really good information they were there answering any questions and anything that asked them they were always really honest with their answers and honesty was probably the best and kind of got us through it because if they lied to us about something then we would have just been struggling to get on with it, like why is she not doing this, or, why is she not doing that or why is she getting treated different to what you said they were going to do and they, they didn’t take her off any medication too soon either. But other than that one incident with the pain relief everything was fine so, but that did annoy us and we told them that annoyed us and they apologised so it was alright, yeah.

Zoe found it frustrating that she didn’t know when they would be able to live as a normal family.

No it wasn’t enough because it was very black and white it was a case of, these are the facts and no more like it didn’t give you any kind of timescale or anything and I think that sort of bothered me the most was we didn’t know when we could start living as a normal family being outside of hospital it didn’t really give any experiences of what could go wrong what can go right, there was nothing on that so I found that quite difficult. a lot of it was kind of like if buts and maybes of the amount of bowel the quality of it again, which I understand, it was just very frustrating it’s like being pregnant and not knowing what’s gonna happen next.

Zoe said she made lifelong friends while sitting with her daughter in hospital. Those relationships really helped her through.

The environment I think yeah cos you’re sitting there and it’s hard not to but you compare yourself to every other family in the room you get to know every other family in the room you get to know their story as well and when, what I found the hardest was when she was getting better but the baby next door wasn’t and you’re bumping into those relatives in the corridors and you ask each other out of kindness ‘Oh how are you getting on, how’s your son, how’s your daughter?’ and it was the day that she got moved into the next room for the general ward and the baby that was born the same day as her wasn’t getting any better and you just felt absolutely heartbroken but you’re delighted at the same time for yourself. That is probably one of the hardest things, and you’re hearing all the stories and yeah it’s just we were lucky that she only had one setback that one biley vomit we were really, really lucky but not every baby was so that was I think the hardest as well like it’s not just your own kid you feel sorry for everyone that’s in there. Cos we actually made some lifelong friends in that place so.

Did you, was that just sitting next to the cots and chatting to each other.

Yeah.

And was that an important, were those important relationships?

Yes, yeah I think because that’s the only way you’re gonna have a conversation with somebody that knows what you’re going through. Like I’ve got, like we’ve both got friends and family most of them have had like kids in hospital at some point but not to the extent of where it’s from birth and it’s really hard to find someone that has been through that, so it’s just really helps sometimes to have a normal conversation that, that’s yeah you don’t get much of it when you’re in there not when you’re away from home I think that’s the hardest part being away from home dealing with it as well so. We obviously met people through Ronald McDonald as well, not all of them had babies but some of them had older kids as well but it’s a different world, it really is it’s like Big Brother you’re away from everything else so, you don’t get much reality, yeah.

Except it is your reality isn’t it?

Unfortunately yeah.

For that period of time yeah.

Yeah.

Zoe said she found information was limited, but she was also wary of looking at forums because they don’t paint a true picture.

I don’t know the reason I found it hard was that information you were given was so limited it was just once source so there is no comparisons and we didn’t want to read forums because forums are just never good about anything. cos they don’t always paint a true picture it’s just somebody’s personal opinions but I feel now I have done research and looking back at other people’s stories I think we were treated in a really good way in the fact that my pregnancy was monitored so closely I was told everything to watch out for while I was pregnant towards the later stages we were warned about inducement was from 34 weeks so I was so focused on every week from that point on and I think the fact I was induced at 37 weeks was a massive key part as well, I’ve heard about other babies being induced too early, too late and the damage that can have. So I think, I think that was a major part in how she survived so well and has been thriving ever since.

Zoe said speak to someone else who has gone through it, the support of other mums and dads was second to none.

Speak to somebody else who has gone through it, purely because it’s not as bad as people make out, I mean it is, it is tough it’s horrible to have to go through it but that support of the other mums and dads that we met was second to none and we’ve since actually learnt that other people at home have gone through it, not the same thing but a similar experience and we didn’t know, and that could have done wonders to us as well so. When we put on the Facebook that [daughter] was born and she was in [children’s hospital], we got a few messages saying oh we’ve been through something similar and that was just amazing to actually have somebody to talk to because they’re like it’s not easy.

Zoe described how vital it was to talk some time out for herself, to feel a little normal for a while.

And the other thing is to actually take time out for yourself like and fortunately baby’s not going to remember what they’ve been through but that’s also a blessing and like we left [daughter] the day after her operation and she was on all that morphine because she just slept all day, we were like right we’ll take a few hours out and we went for a walk in sun and we went for lunch and we remembered what it was like to be normal and we felt so refreshed afterwards it was just incredible to have that time away from being indoors constantly because the only fresh air otherwise is from wherever you’re staying, to the hospital and back and that’s all you’re getting and you don’t need to feel bad about it. Cos we did the first few times every time we left her we felt oh we should be back with her or should we go back now, no, we were like, let’s just chill for another 20 minutes at least and have a cup of tea so. That’s I think that’s vital is to have that time out.