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Parents’ experiences of neonatal surgery

Looking after a baby at home after neonatal surgery

After long, anxious days and weeks in hospital, bringing their baby was home was a huge relief for parents. Jane described it as a “glorious day”. Mary said having her son home with just her and her husband and no doctors and nurses, was really “quite special”. Zoe said, “I loved to be home. I loved the fact that I could get up in the morning and not have to get dressed and showered before I went to go and see her, and it wasn’t like visiting my daughter….it was just being able to get up in the middle of the night and give her a cuddle and take her to bed in the morning to have cuddles, watch TV and I loved it.”

Coming home was a big step towards normality, but it wasn’t always plain sailing. There were practical and emotional hiccups along the way.

Daunting

Several parents described how daunted they were at bringing home their baby who had been so sick in hospital. Would they be able to cope? 

“I was very concerned about how I was going to cope, because I was aware that not only would I have kind of full time looking after this still very poorly baby, but also that I would then be needing to do the normal stuff.” Jane

“It was actually quite daunting, because we had no nurses either to help us.” Shanise

The transition from watching their baby being so closely monitored by machines and nurses in the hospital setting, to normal, unmonitored home life, could be frightening. But despite these initial fears parents said that after a settling-in period, and learning what to do, they established a new home routine.
 

Amy E said she found coming home very hard. She had been used to knowing everything about her daughter’s temperature, breathing etc, and found it hard to cope knowing nothing at home.

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Age at interview: 32
Age at diagnosis: 29
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But yeah it was an odd sensation, when I came home it was even harder because I’d gone from knowing everything about her, how many breaths she took a minute, what her blood pressure was, what the temperature on her foot was, what the temperature on her head was, what her heart rate was, everything, to knowing nothing and I just couldn’t cope with it, could not cope with it because I just, I was just so, I just could not cope with not knowing that she was alright and she obviously had no routine because she’d been in intensive care unit for six weeks or high dependency, it’s always, the lights always on aren’t they even when they dim the slightly the lights always on, you cry someone always comes, someone picks you up all the time someone checks on you. So at home she was like that and it was just hell she just had to, she never slept, she never slept in the day, she never slept at night and when I got back no-one had you know spoken about the fact that I didn’t produce enough milk cos I had, I’d had enough stored up at that point and they were still giving it to her but I got home and I suddenly realised when I got home that I didn’t have enough milk from my stores, my frozen stuff and I wasn’t producing. So the second night in I didn’t have enough milk in my boobs to actually feed her and she was screaming and crying and I had some milk that had antibiotics in it which they told me probably was safe so I tried to give her that and she was sick and diarrhea everywhere and it was in the middle of the night. I was like didn’t know what to do, do I feed her and poison her or do I starve her cos I had nothing else and I was told not to give her normal formula because her bowel condition. So the next, so I starved her and had her crying all night and the next morning I took her straight to my GP and told them and they were like oh I don’t know what to give her so they prescribed her some disgusting Nutramigen, I think it was called, formula which I started to give her which she did drink she was so hungry but it’s not like, its’s not horrible. 
Isolation

Feelings of isolation could continue even when parents were home. Although well enough to be discharged from hospital, babies might not be strong enough to be allowed round other babies and children, so parents were stuck at home, not able to take them out. If their baby was still on oxygen or there were lots of medications to give at different times of the day this limited what people could do. Mary kept her son away from playgroups and was afraid to take him out for long periods while he still had his stoma*. Once he had his operation to reverse the stoma, “we kind of were restored to more of a normal social life”.  Jane was really grateful for the visits from a home help who provided social support for her.
 

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

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Age at interview: 36
Age at diagnosis: 34
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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.
Practicalities

Parents had to get used to a new role once they were home; they were carer, nurse and an advocate responsible for co-ordinating their baby’s care. There were daily caring tasks to do – nappy changing, feeding (sometimes through a feeding tube), changing dressings, changing oxygen cylinders and giving medications. But also medication and equipment to order, appointments to make and attend. Parents were also now responsible for monitoring their baby’s health, alert for signs or symptoms that meant they might need to rush back to hospital. Several parents we spoke to had to take their baby back to hospital (see ‘Follow up and setbacks after neonatal surgery’). It was often a very intense period. “You’re basically just being a nurse”. For some, the schedule was very busy. Fiona said she had to get up “Every four hours, I used to sleep with the light, my bedside light on, sitting up.”

Parents becoming experts

After several weeks or even months playing second fiddle to the nurses and doctors in hospital, being home was when parents were finally in the driving seat. They soon became experts in providing care for their baby, and recognising signs when they weren’t well. Mike said he became the “dressing king”; after a rocky start. Jane became an expert at dressing her daughter’s exomphalos*, “treating and dressing it was still a bit of a skill. It got easier and easier and it’s a real shame. I’m now one of the finest exomphalos wrappers in [county] and it’s not a skill that’s really going to be used that much, is it?”  

Mary mastered changing her son’s stoma dressings; Claire learned how to look after her son’s tracheostomy; parents of babies with Hirschsprung’s disease* learned how to do bowel/rectal wash outs and researched the best creams to treat the terrible nappy rash their babies often had. But it could be daunting being responsible for the care of their sick baby.
 

Lucy and Jason became very skilled at performing the rectal flush outs their son needed. Daily life revolved around them.

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Lucy: But our lives still revolved around rectal flush outs, because he had to have them twice a day because he couldn’t clear himself at all.

Jason: Yeah.

Lucy: Everything worked around that any time we wanted to go out, you know, it had to be 12 hour intervals so I think we used to do them at like 9 ‘o’ clock didn’t we, used to try and do 9:00 and 9:00 so that if we needed help we could get someone round to help us. But they’re relatively easy.

Jason: We didn’t need any help because he used to sleep through them. 

Wow, okay

Jason: He didn’t struggle at all he quite enjoyed it didn’t he.

Lucy: Yeah. It’s weird though cos now when I think about it my mobility wouldn’t have been great at the time with being quite soon post-surgery but it wasn’t actually that complicated then was it when he was so little.

Jason: No.

Did you feel confident doing them, felt like you’d been well trained in the hospital and?

Lucy: Yeah I’ve never been squeamish I’ve got a background in biology a bit of dissection and stuff and I’ve flushed out rat intestines in the past as part of my degree so it didn’t really faze me at all I was like alright, okay yeah I can do that we can give him a flush out on the dining room table.

Jason: No you always lead the flush outs I was the guy who was handing the bits.

Lucy: He passed everything to me.

Jason: Yeah.

Lucy: I always found it a little bit, it did freak me out a little bit when I pushed the tube and you could see it poking out the side of his stomach I was like.

Jason: You wondered if it hurt him.

Lucy: Yeah I was like oh I don’t like this but, because he was so relaxed and you could see the difference, you know, he went from having a massive extent, you know, distended tummy and you could see it going down while you were doing it so you knew that it was the best things for him and yeah if wasn’t too bad at all really, little bit messy at times.

Jason: No issue with it at all.

Lucy: I got competitive with how much we could get out didn’t we?

Jason: Yeah.
 

Emma said that suddenly having to deal with all the medications at home was very difficult. No one gave her a plan for how to manage it all.

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Age at interview: 30
Age at diagnosis: 28
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I think when you come home, never having been doing medication and doctors before having to suddenly deal with a lot of medication is very difficult and I think there is no follow up to that, there’s no-one to go ‘How do you do these levels, do these levels need to go up, does he, can he start to come off them,’ it’s only if you’re having an appointment with our specialist that they’ll look at it, nothings looked at in the meantime. And [son] was on a lot of medication so to suddenly be brought home and I’ve got pictures and it’s like so much of it, you know, and Vitamin A, Vitamin D, Vitamin K he needed liver medication, his reflux medication, heart medication there was so much and it’s hard to manage, no-one can say to you, do a plan, do this, you know, the best way to give medication is have a chart and you can tick off or anything, no-one gives you any plans of how to manage it. And I think when you first come home until you get into a routine that works for you that’s something really difficult and really scary because how do you know you’ve given them, you’ve given them a 100% right, no-one tells you how to pull it up no-one tells you you’re doing the right dosage, no-one checks it so how do you know, and you do learn but that’s really hard and there’s no follow up to that, none and that’s difficult to manage.
It was often very hard work looking after their baby’s extra needs at home. This extra care mostly fell to mothers, as fathers were often back at work after taking extra time off while their baby was in hospital. “Obviously, we both did it but [wife] had to do the lion’s share because, obviously, I was working full time,”(Mike). Donna decided to take voluntary redundancy after her son’s operation for Hirschsprung’s disease, “cos we didn’t know, again we don’t know where he’s gonna be in a year”.

Getting towards normal

Finding the balance between the medical needs of their baby and wanting to get back to normal life could be a struggle. Nicky said she was so thrilled to be able to do “some normal things” with her son, like baby massage. She finally started to feel “detached from that episode [in the hospital] if you like, so I think we are more fully in the normality of whatever that might be than the sort of medicalisation.” But this wasn’t always an easy transition. Victoria described how stressful it was bringing her baby home, and how it has taken her a while to build confidence in being able to look after him.
 

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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Age at interview: 31
Age at diagnosis: 31
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So, you know, I don’t think anything could ever, we came down to earth with quite a big bump [laughs] it was awful I was like I just didn’t, I didn’t enjoy having Bobby home at all. I loved him and it was great but I was on pins, I was anxious I was really emotional it was awful, now totally different it’s like, you know, it’s having well it’s not having a normal baby really, cos you’ve got a multitude of appointments and people coming to see you and stuff, added things that you usually wouldn’t have but it is nice now cos you can go out and you feel, do things ‘normal’ as possible so.

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.
Community support

After being cared for in specialist hospitals, parents often found that the community or district nurses did not have the expert knowledge they needed, although Jane did have great support from a “fabulous” specialist paediatric nurse who came to the house every day for a while. Being able to phone or see consultants or specialist nurses was really valued at this time by parents. “We found that the community children’s nurses actually didn’t have any or much experience of exomphalos* or tracheostomy* care, so we were on our own….a lot of the time [son’s] consultants are very good and they made themselves extremely accessible to us. So they would keep in touch with us by email.” Claire

Some talked about being able to take their baby back to hospital to be checked if concerned. Emma said having open access to the ward where they can turn up with their baby and see doctors who know their baby was so important. Mary could see the stoma nurse at the hospital the same day if she was concerned (see ‘Follow up and setbacks after neonatal surgery’).

The babies of the parents we talked to had a wide range of conditions and therefore had different paths to recovery. While some parents needed to remain in close contact with specialists for years after discharge, for others coming home was the start of putting their baby’s surgery behind them and getting back to normal.
 

Leanne remembers very clearly the day she took the emergency phone numbers off the fridge and unpacked the hospital bag. It was a really good day.

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Age at interview: 36
Age at diagnosis: 36
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The high point throughout all this year was the 1st November for me because we took down all the emergency numbers from the fridge because my life had been literally a hospital bag packed and our fridge had, you have the surgeons number, there’s [children’s] Ward you know, all these out of hours numbers and the fridge is just one of those places kind of centre of the kitchen isn’t it and you’re always looking at it, always on my mind. And just that day to be able to take down all the emergency numbers felt like we’d really, it was a really good day I’ll never forget it.
*Footnote definitions:

Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

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.

Hirschsprung’s disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing.
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