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Parents’ experiences of neonatal surgery

Impact on the family and friends as a child grows up after neonatal surgery

Having a baby who needed neonatal surgery had a huge impact on both parents and the wider family and family life. Parents we spoke to described how it affected their relationships with each other, with friends, with grandparents and other family members, including the baby’s siblings.

Relationships

Several parents talked about how having a baby who needed surgery affected their relationship with each other. Some marriages or partnerships had not survived. Those still together were honest about the strains it had put on them (such as Clare and James who son has Hirschsprung’s disease*).
 

Julie described the arguments she had with her partner, and how isolated she felt while she was in hospital, and he was working and looking after their older son.

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Age at interview: 39
Age at diagnosis: 30
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And how would you say that’s impacted you and your partner and [eldest son]?

A lot, me my partner used to argue all the time when we were there cos obviously he was stressed because of [son] and work cos, cos at the same time we found out that that [son] was ill, he actually, he was in a partnership with someone and he walked away from that because it wasn’t, the other person wasn’t family orientated, he was very work focussed. And because [partner] was very family orientated, don’t get me wrong he works, still does work all the hours God send but when, in the evening he comes home and the focus is on the kids and his partner at the time didn’t like that. So he walked away from that and he had to walk away leaving all his customers because that was there, it was his business and the person joined him. But because he was the one walking away he had to leave everything so he had to start from scratch. So yeah he had all that side as well worrying about I had all the, you know, living in a hospital and feeling very isolated and lonely, I didn’t really have any friends because I was just stuck there and nobody came to visit once, you know, the novelty had worn off it was just, you know, normal for [son] to be in hospital so no-one came to see him. So the nurses became my friends and my support yeah it was, you know yeah it was horrible.
 

James and Clare were very honest about the strains that having a son with Hirschsprungs disease, that took a long time to diagnose, put on their marriage.

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James: Well I think there was the extra stress cos you, you know, you think you were conscious there was something’s not quite right and that wasn’t helping. And it didn’t, you know, it didn’t help us personally on our relationship much did it. It did create a friction I think that’s, you know, that there’s no point in concealing that, it was quite hard work, you know. I was commuting quite a long way each day so, sadly enough I couldn’t be home when I wanted to be and that didn’t help really. You kind of sit there and think well with hindsight could I have been there for that? Could I, you know, it’s all, well I could do that, I suppose but, you know, had I been there and been that… and said well hang on, Clare you know, you’re absolutely right, but you’re pretty tired, not to be dismissive but acknowledge that fact and do help us whoever you are I don’t agree with you and I do want to take this further and this is not for discussion this is going to happen would have probably taken the pressure off you, you know. It is difficult, you know it is very difficult, you know my two weeks paternity leave kind of went [pfft] in a flash, and suddenly I was back to three and half hours driving a day, you know, it’s just the way it is I guess.

Clare: And I think there is definitely something about, and it, you know, particularly because I was breastfeeding and everything, you know, I did feel like it was all down to me, you know, and I was sort of trying to cope with everything and juggle everything and you just kind of think well this is just one more thing and I don’t really know where to go with it, nobody seems to be really taking me seriously. I’ll just, just plough on then, you know, what choice have you got really.
Several parents described the isolation they felt as one of them was in hospital caring for their baby, and the other was home looking after other siblings. Claire said that her husband “was obviously being like a single parent”. Lucy and Jason talked about how it was hard to find time to spend with each other, especially going away overnight, when their son who has Hirschsprung’s disease and a stoma*, needed so much of their time and attention.

Friendships

Several people said their friends really rallied round and supported them, but it could be hard to maintain friendships, or make friends with new mothers. “I, in particular, got quite isolated and people’s lives go on and yours doesn’t. You’re just stuck.” Jane
 

Jane talked about how the uncertainties around her daughter’s health meant they could not plan to see friends and family. They had been very sociable, so found this hard.

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And how have you coped as a family with her and her exomphalos and?

[Phew] …It was very disruptive at one point, you know. We’re quite, we’re both quite sociable people and we just couldn’t plan anything for years, you know, because we, you know, we would try and say, ‘Oh right, we’re going to come and see this particular set of friends this Easter’ or whatever, and a lot of our very good friends actually don’t live where we are. We used to live in London and, you know, so, when we’d been up in we’d been up north for about four years when this all happened, and that was difficult because, you know, you were kind of cut off a bit from the people you would have really liked to talk to. And I think my husband, in particular, you know, he, typical man, he hasn’t got as many friends as me, and not me, as a woman might have, and I think the friend who he probably would have really liked to have had local then was not there, so that was difficult.

But yeah, I think it was the, the period, I think the period when it was we kind of knew things were going to be really bad, that was okay because it was kind of like right and I’d find myself, if I know what the situation is going to be like or could be like, I can kind of cope with it okay because it’s like well, that’s going to be awful and the baby might die and all that. But it’s kind of, your brain can somehow get, get itself round that. But I think when you just don’t know and you can’t ever plan, you know, it could be a friend’s birthday or your parent’s wedding anniversary or something and you just can’t say, “Yeah, we’ll be there.” 

So I think, I in particular, got, got quite isolated and people’s lives goes on and yours doesn’t. You’re just stuck, you know. You’re, you’re just kind of, you know, work-wise, everything and I, you know, I never wanted to be a housewife. That was never how I perceived myself. I’ve always worked, even, you know, working from home or whatever and I just couldn’t do that during that period.
Claire described how hard it was to keep up with her friends, as she found it difficult to be around other children of a similar age when her son was young and so very ill. She still needs to spend a lot of her time caring for him, but the support she has had from some of her friends has been “priceless” – “just kept texting me or calling me when I didn’t reply because I had too much going on. Come round and bring lunch, come round for 10 minutes because that’s all we could cope with.” Clare felt that she was “robbed” of being able to form relationships and friendships with other new mums and lost the opportunity to share and get support from others’ experiences in those early weeks.

Other family members

Several parents talked about how vital the support they received from their parents and wider family was. But they were also honest about the emotional impact it had on family members. Louise described how upset her mother and her sister were when her son was ill with congenital diaphragmatic hernia (CDH)* (see below).

The support some parents had received from their own parents was invaluable, both emotionally and practically in helping look after other siblings. Vanessa talked about how her mother Googled Hirschsprung’s disease the minute they found out about her son’s diagnosis. She became “suddenly an expert” and her family has been a fantastic support in looking after her son – “especially my mum she looks after him and they all know what his normal is”.
 

Louise remembers how worried her mother and sister were when her son was ill in hospital.

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Age at interview: 32
Age at diagnosis: 26
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Yeh my mother was very worried, I think [husband]’s mother was very worried as well my mother’s perhaps a little closer because you see I’m her daughter and things I think everyone sort of struggled with it. I remember my sister, now she’s my twin sister, she lives in Bristol and she said once she broke down crying in work and they said what are you doing here get home, so then she came and like I said it was a struggle for them because they couldn’t see us a lot either because we were living in the hospital and they would visit us there in the canteen or something but they couldn’t see the babies and when we were with them we were like great lovely to see you but we’ve got to get back to see the babies. So I think they felt probably out of it and we couldn’t do anything to help them with that. But they were trying to be there for us which they all did their best to be. I think as a family we struggled with it.

I think it’s inevitable though isn’t it?

Yeh and then they all seem worried about us because they could see us stressing and worrying cos I think my mother said once she’s, obviously she loves her grandchildren, she didn’t know the grandchildren obviously at that point but she was like but you were my baby and I’m worried for you and I want you to be oaky. Now she loves those little boys more than anything.
 

Ally described how her mum cared for her older son, but therefore missed out on seeing her younger son when he was ill in hospital.

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Age at interview: 37
Age at diagnosis: 37
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I think on the likes of, like my mum who had [older son] which she, she loved but I think as well she would have liked to have seen [son] more often and when she did see him she had to come and see him in hospital and I think she found that hard. And I think she, its hard work looking after a toddler as well day in and day out and he was in nursery so there was a bit of respite but I think it was hard for her as well in terms of just, the energy and the sort of yeah having to look after a, a toddler day in and day out. Things like she would get the train to [city] and that’s not something that she would normally do so, probably putting her out of her comfort zone but she just had to get on with it because she didn’t want to stress us out thinking well how, ‘I can’t expect them to come and get me’ and things like that so I think for my mum it had an impact. And I think my dad obviously they’re over in [city], they came over and did have [older son] a few days for us as well but I think because they’re so far away they just want to be able to do more but can’t. I suppose they worried about me as well am I alright and [husband]’s parents and, well his dad and his sister they again it’s that distance for them to be here to help and just that worry for everybody really wanting to know and they getting our feedback and obviously sometimes us saying ‘Oh it’s been a really bad day,’ touch wood there wasn’t many of those but when there was, be worrying waiting for the next bit of information on how he’s doing.
Siblings

Parents tried as hard as they could to keep things normal for their other children, but their baby’s surgical needs did impact on siblings, some more than others. Some talked about their other children being very affected, but others felt there had been less impact. In some families one or both parents were away from home for long stretches of time, and there was anxiety about whether their new brother or sister would make it home.
 

Rebekah tried to keep things as normal as possible for her two older daughters, who were only toddlers. But they were still very unsettled at bedtime when she first came home from hospital.

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So it was, we tried to keep everything as normal as possible.

Yeah.

So for them it was a little bit sad because they’d been told oh the baby’s coming home tomorrow because of course I was told I was having the caesarean and they were so excited and then she just got whisked away straight away. So we took them up there as soon as we could after she’d had her surgery and of course they could only touch her they couldn’t hold her and they were in intensive care like there was cords and stuff going everywhere so they were literally in there for five minutes because they were just a nightmare. But they so we tried to keep everything as normal as possible so, you know, going to bed, so they didn’t actually realise that we’d left the house because they were asleep. But we noticed that it did impact, I think it had impacted on them afterwards because after, just before [3rd daughter] came home and you know, and probably the first month after [3rd daughter] was home them going to bed, they would normally go to bed and go to sleep quite quickly, they were a nightmare their whole, they just, they just really started playing up going to bed and I’m sure it was to do with being really unsettled about what had been going on. But yeah we took them to see her as much as we would normally go up on Sunday with them because it was my husband and I we could control them in the unit. But, but they weren’t that interested. They liked to go and see her and they’d used to tell me just to put [3rd daughter] in the van and take her home. But yeah we’d talk about it and they understood that she wasn’t very well and, but yeah it was just the going to bed thing that, apart from that they didn’t really, behaviour wasn’t bad or anything, didn’t really see a massive, massive change or anything.
 

When Luke and Angie rushed their new baby into hospital, they didn’t see their older daughter for several days, which they feel traumatised them. They now have regular conversations about what a frightening time it was for them.

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Angie: I think they coped really well with it.

Luke: We got some things wrong.

Angie: Yes.

Luke: You know there’s no doubt about that and because we were so focused on we need to be ether for [son] we weren’t there enough for them at the time.

Angie: In the very beginning. And we corrected that for his operation.

Luke: We did corrected it very quickly.

Angie: You know they went off for the first three days I think they were, we didn’t see them and then his operation we said well we’re gonna have one parent at the hospital and one parent with the girls so that we’ve got that continuity. And we’re going to make sure that they can come and see him every day which they did. But yeah we felt like we dropped the ball a bit with them really and they still talk about it.

Luke: Yeah there’s no question that they’re were left traumatised by it, I mean.

By you disappearing?

Luke: By the whole experience, I mean they will still say now we will be having, you know, we were having a car journey two days ago and the youngest said, ‘When [son] was in hospital I was very sad because he could have died,’ and that’s a very regular conversation that we go through and we work through and, you know, it’s one of the big debates people have about whether you should tell children or shouldn’t tell children and for us it was very, very important that we were straight with them and that we - you know we were honest with them and that they knew that there was a risk. As opposed to having the shock and the situation of you went to hospital and now he’s just not come back. I know that’s a decision which lots of parents will go the other way with it and I don’t think there’s a right or a wrong and it’s kind of where your family’s at.

Angie: But we, I mean we now kind of, you know we have that conversation and they, and they say, you know.

Luke: And we said but we’re happy he’s.

Angie: Yeah we, we say and that now we’re really happy that he’s, the doctors treated him and he’s home and he’s healthy and things are good. And they’re starting to add that into the narrative.

Luke: Yes.

Angie: Which is great, you know, it is something that has definitely impacted their memory strongly, but they are starting to add to the narrative that we are happy that he’s home and, you know, that he’s doing well. And I think it made a massive difference to them that he was home in the between times, between when he first went in and his operation I just think we had a normal life and that was, you know, as normal as it can be with two wash outs a day. But it was, it was normal we did normal things you know, we went to parties and weddings and picnics and museums and all sorts.
Older siblings, who were often only toddlers themselves, sometimes found it frightening and difficult to understand the disruption that was taking place in their daily routines. Leanne found her three year old son really played up for a few months while she was looking after her baby daughter who has Hirschsprung’s disease. “He was finding it really hard….You think you’re doing a really good job of balancing everything but you look back and you think, ‘No, it’s still really hard on [son]’.” Emma has tried very hard to keep life as normal as possible for her older son, while she has been in and out of hospital with their younger son who has oesophageal atresia (OA) with trachea-oesophageal fistula (TOF)*, as he was struggling and developing night terrors because he missed his mummy.
 

Emma wanted to try and keep her older son in his routine, as he was very unsettled by her being away from home.

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Age at interview: 30
Age at diagnosis: 28
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And then suddenly this came round and we hadn’t had time to save on top of it and it’s a lot to live at the hospital especially when I had to still, I could not pay for my childminder to have my little boy because I wanted him kept in the routine and I needed him to know who he’s going to so, you know, even if [son] wasn’t there he was kept stable because he was struggling a little bit my other littler boy, he was having like night terrors and waking up screaming for mummy and where was my mummy and she’s off and so I needed him kept in the routine so that he wasn’t struggling so much. So yeah it was, it was hard, it was hard, and we’ve only just, just now starting to get a little bit back on our feet.

Yeah, is your older one alright now that you’re home are things a bit more stable?

He is he still has times, so when [son] was back in hospital last week his teacher commented, [older son] he was unsettled in school struggling to concentrate a little bit and so… I’ve actually got a meeting with her tomorrow cos I don’t think they handled it very well, they have a points system and he kept getting points taken off him for not being settled even though they knew [son] was in hospital. So I wasn’t, yeah I don’t, I didn’t agree with it because I was like well, you’ve got to have a bit of leeway here, you know. It’s not a normal situation, his mum and dad aren’t there, he’s not sleeping in his own bed, he doesn’t know when we’re gonna be home, he’s gonna be a little bit unsettled, rather than taking a point, maybe talk to him, do you know what I mean [laughs].

Yeah so actually I’m going into the school tomorrow just to kind of discuss it more with them. But they don’t know a lot about [son]’s conditions, you know, our doctors surgery’s been really open and honest and said we’ve never had someone with [son]’s conditions in this clinic, we don’t actually know, they try and, you know, check his heart and they’re like we can’t get his heart, we can’t even do his, you know, his pulses because it’s that all over the place. So the school haven’t really got a chance because they don’t understand [son]’s condition so how are they meant to support [older son]. But the good thing the paediatrician are arranging this there’s supposed to be a new liaison nurse to help when [son] starts going to nursery, starts school of what he’ll need with him at school and I’m hoping when that starts to kick off that the school might understand more about the support that [older son] needs because of [son]. Cos it’s hard on the both of them, you know, so maybe [son]’s going through it but [older son]’s had a massive upheaval as well and I think you forget about that, you know, we’re going through all the hospital but then you’ve got a little 3/4 year old at the house not knowing where his mummy and daddy are having a baby brother or sister which is hard enough for a new a child to contend with and mummy has left me and I’m in the house and they were there when I went to sleep but they’re not there the next morning and. It was a lot of upheaval for him.
But some older children did seem to cope better. One of Pamela’s older daughters got involved in tube feeding and helping. Fiona and Mike said their older son was very gentle with his younger sister, and Claire said her son had been amazingly patient with his younger brother. For parents who were living in hospital for weeks or months on end, maintaining some kind of normal family life was really difficult. Several, like Julie and Fiona and Mike, tried to make the weekends about visiting as a family, taking in supper and being together. But having children visit in hospital could also be challenging and stressful, as Joe described.
 

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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Age at interview: 36
Age at diagnosis: 34
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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.
Parents were honest about how hard it had been for older siblings, even once their new brother or sister was home, as there often lots of appointments to juggle and ongoing health issues. “Our oldest son has been absolutely amazing. He knows more about trachys* and everything else than most doctors do, and he’s been very patient with [son], but it has been hard for him.” But they were also able to talk about how their baby’s illness had strengthened the family.
 

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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Age at interview: 36
Age at diagnosis: 34
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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.
*Footnote definitions:

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.

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.

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

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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