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Parents’ experiences of neonatal surgery

Emotional impact on parents when a baby has neonatal surgery

Coming home with a baby after surgery, with sometimes ongoing complex health needs, was often difficult for parents. The anxiety and isolation many had experienced in hospital often continued. Many felt that it had changed them, and their relationships.

Effect on relationships

While some couples did not survive the experience, others felt that it had strengthened their relationship. Claire said, “I think it’s a kind of make or break type of situation, having a child with [son’s] level of needs and everything we’ve been through…we’ve definitely been made stronger through all of this”. Adam and Sonya were in hospital for 3 days with their daughter who had a hernia* operation when she was just three weeks old. Although they were exhausted when they got home, they felt the experience had tested them, and they had passed.
 

Adam and Sonya were shattered when they bought their daughter home from her surgery, but it felt they had passed a test as first time parents.

Adam and Sonya were shattered when they bought their daughter home from her surgery, but it felt they had passed a test as first time parents.

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Sonya: Yeah that Saturday afternoon and Sunday we didn’t do anything did we, just zonked on the sofa.

Adam: Yeah and then I had to go back to work which.

Sonya: You didn’t go back on the Monday, did you go back on the Tuesday, and I think you might have had Monday off.

Adam: Oh maybe. It was tough because I, obviously I was tired but not anywhere near as tired as Sonya was because I had been coming home again sort of at least a few hours whereas you’d just been up straight hadn’t you so it was tough going back to work I think on you, because you were then with her and she was still, you know, very young and demanding and things. But that, it helps that she was sleeping well so.

Sonya: Yeah we’d been quite used to not a lot of sleep anyway.

Adam: Yeah.

Sonya: So and then it just, I dunno.

Adam: In terms of how I guess emotionally how we felt about it I don’t know how you felt but in some ways I did see it as that we’d passed the test.

Sonya: I felt that we could cope with anything now.

Adam: Yeah and I think it alleviated lots of fears in a strange way about being a first time parent because you always, yeah you’re always worrying that are you doing the right things you know can you do this, it’s all, looking after another life and it’s quite sort of an intense time anyway. But when that happened afterwards suddenly it all seemed quite easy cos, cos it was easy compared to the three days of her going through that.
Lucy and Jason’s son has had several operations for his Hirschsprung’s disease*. They have helped each other through the ups and downs, and never fight. “Normally one of us can pull the other…. generally speaking one of us is the one who is focused and the other one is - not in pieces but just not quite with it - and we, we help each other through.” Victoria’s partner helps her ‘get a grip’. 

Others we spoke to were honest about how coping with their unwell infants had put a strain on their relationships. Joe said she and her husband rarely had a conversation that didn’t revolve around one of their daughter’s medical needs, “he’s been my rock through the whole thing, but we’ve definitely lost our spark.” Amy E struggled emotionally when she brought her daughter home from hospital after her operation for gastroschisis*. She found it hard that her husband went back to work, and looked to her to make all the decisions about their daughter’s care. She found the pressure hard to cope with. Equally partners said it was “tough” going back to work.
 

Amy E felt lost and isolated when she came home with her daughter.

Amy E felt lost and isolated when she came home with her daughter.

Age at interview: 32
Age at diagnosis: 29
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I don’t really know to be honest I think, I think thinking back I probably did suffered a bit of post-traumatic stress I think and post-natal depression but just didn’t want to admit to myself cos I remember now thinking when [husband]’s back at work I was begging him not to leave, begging him and I felt pangs of jealousy towards him that he got to go to work. Because I also felt like the way that [husband] is and no criticism to him, but the way he is he always says to me, ‘Well what do you think, do you think we should go to hospital do you think we should give her this?’ So I felt like it caused arguments with us cos I’m saying why is it always my, why is it always my decision what if I make the wrong decision am I the one then that’s in the, blamed for not doing the right thing with her it’s to be joined up thing. But he was like well I don’t know - you know her better than me so all the-. I just felt like I was, and I remember once I just didn’t want to see anyone, my mum was phoning me and I’m ignoring it, ignoring the door I just didn’t want to see anyone to the point that someone was like just open, let us in because I just didn’t really know what to do that’s the only way I could describe it. But I got myself out of it in the end and I don’t know, I can’t really tell you how over months, but also as well at that point I couldn’t even sit down still because of my tail bone and I finally went to the GP about that, got given antibiotics and all sorts of stuff and made no difference then I got an x-ray and they were like ‘Oh your tail bones not right it’s completely smashed in.’ So they were like ‘What’s happened have you fallen on it?’ I was like ‘No but I’ve given birth’ and they were like ‘That’s what’s happened.’ 

So, you know, I think those first like eight months I was at home were hard. And also when I went back to work I went back to work after I think it was after nine months I went back, but the first lot of my maternity leave to me was not maternity leave it was being in hospital and intensive care or being home and panicked constantly that she was gonna die so that, that something was wrong with her even more wrong with her, this was wrong that was wrong arguing with my husband all the time cos none of us really knew what we were doing. But, sorry, but yeah and then I went back to work so I felt like I’d been on my- I was cheated from my maternity leave that’s why with this baby I’ve taken a year off, [daughter]’s not, she’s at big school in September so I’m really looking forward hopefully to having time with both of them and to just chill out a bit because it was, it was hard. 
Feeling lost, lonely and anxious

Parents had described feeling isolated in hospital, and this often continued once they came home with their baby. They felt they shut themselves off as they struggled to cope with their baby’s needs. Donna said she was struggling with her anxiety after her son’s surgery for Hirschsprung’s disease. Victoria’s son was born early and had a bowel operation after he developed necrotising enterocolitis (NEC)*. She said her anxiety levels had been awful since bringing her son home.
 

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.

Age at interview: 31
Age at diagnosis: 31
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My anxiety levels have been awful really it’s been hard for everybody because I’ve been up and down emotionally. I actually currently are having what is called Conditional Behavioural Therapy because I’ve basically got post-traumatic stress from Bobby. When Bobby first came home feeding Bobby was awful I remember going to the doctor and saying ‘I feel,’ how I felt, and they were like you need to kind of take yourself away from what’s making you anxious and I said ‘Well one of them things is feeding my son’ because Bobby had quite a big choking incident on me and it was, it was, I was just on pins, I was just on pins all the time, with his breathing, with his feeding, his sleeping it was awful. And they were just like ‘Are you going to hurt Bobby?’ Yes I am, yeah I’m gonna hurt my son [laugh] like no, of course I’m not gonna hurt him. But I’m just finding this ordeal quite hard, you know, and I thought - I was finding being on my own with Bobby quite hard I didn’t want to be on my own with Bobby, I was scared to death something, if something happened I was scared of him stopping breathing it was awful, horrible, horrible feeling and it’s just, you know, if Bobby makes, like now you get used to his noises, you know, when he’s cooing you know when he’s like grunting and just being a general baby but I didn’t know that that’s what it was, so yeah emotionally it’s hard.

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.
Joanne’s daughter became unwell very suddenly and had emergency surgery that left her with a short bowel, She was critically ill and Joanne feared they were going to lose her.

She feels she constantly lives with the feeling of having looked over the edge of the cliff of losing her child.
 

Joanne came home with her daughter who had a short bowel. She often felt very lost, and didn’t know what to do.

Joanne came home with her daughter who had a short bowel. She often felt very lost, and didn’t know what to do.

Age at interview: 41
Age at diagnosis: 34
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Yeah I suppose yeah it was, it was complicated because it yeah because say that part of me almost felt like - but she is going to die it’s just a case of when and perhaps even I prepared myself, you know, even though I hadn’t obviously and I wouldn’t have. And so subsequently sometimes I felt myself almost like the way I’ve explained it is I’ve looked over that cliff I’ve looked over that cliff of losing your child, I’ve seen, you know, down there and then I’ve come back from the edge but I still walk very close to it, you know, so it’s always there almost next to me, I know there’s this sort of yeah one wrong footing and I’m slipping over that edge if you see what I mean. But so I constantly walk with this fear that’s there of losing her and yet because she is doing so well now and, you know, she’s seven and whatever there were obviously times when that fades, you know, to the point where I won’t think about it for months perhaps, you know, and then maybe she’ll have a problem or, you know, I’ll have a concern and then that will bring me back or she’ll have to get admitted to hospital or something and then obviously that returns you back to the much more fearful stage.

But yeah when it comes to all the other stuff I was just, I just felt lost, very lost sometimes and so I sort of went and spoke to [surgeon] with this list and I’d asked [husband] as well and I really didn’t have any time, you know, I’ve got a tiny baby and stuff so I sort of written some stuff on my phone when I had time and then like e-mailed that to myself and then printed it out, you know, sort of, and then [husband] had e-mailed me stuff and I printed that out as well so it was just an almost like a stream of consciousness I was a just doing a round. Oh and another thing, and another thing and I don’t know how to do this and you know. And I sort of took that into [surgeon] at one time or e-mailed it to him or something and said look I just, you know, pretty much I don’t know what I’m doing, you know, and I just feel like, I don’t know what I’m doing, I’ve no idea, you know, I don’t know how to, you know, what I’m supposed to do, you know. So I go into the school and I say oh this isn’t really working and they say oh blah, blah, blah and I think should I push that harder do I back off, am I entitled to it, what do I do, you know. 

And or, you know, even things like pushing her to eat and stuff, you know, I know that it’s good for her and I don’t want, in the long run I don’t want her to say oh well why didn’t you just make me eat, you know, but on the other hand I can’t physically force her to eat and the more I push, the more I know that there’ll be a backlash as she gets older and, you know, she’ll completely refuse to eat, you know, possibly at all and she wouldn’t actually, you know, that wouldn’t, we’d just have to increase the PN* and it would change her life chances but it wouldn’t, you know, day to day she’d probably manage because she used to having PN and not many calories, you know. So all of those things and, you know, it’s just so much I think and sort of, it’s almost like every week there’s another thing.

* Total Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.
Several people talked about post-traumatic stress (PTSD) and depression and how they sought counselling and CBT.

Ally and Shanise did talk about the anxiety lessening over time. Shanise said, “It feels like a lifetime ago”. Ally described a sign on the wall of the specialist hospital where her son was cared for; “They’ve got little stories on the wall of like parent’s experiences and things and how the children have got well. And one of them does say that once you get home you quickly forget and you do, you do you just move on. I suppose you don’t forget but the trauma of it dissipates the stress and you can look back and think gosh yeah it was tough but….” Shanise and Sonya both said it actually made them less anxious as a parent, other problems seem trivial.
 

Looking back, Shanise reflected that her experiences with her son’s gastroschisis had made her a stronger person.

Looking back, Shanise reflected that her experiences with her son’s gastroschisis had made her a stronger person.

Age at interview: 23
Age at diagnosis: 19
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Yeah, yeah it feels like a lifetime ago, like when I came home cos I put everything on hold I actually had post, like not post-natal depression but depression it was like a back, although we was like home and settled I think it was like a, everything came flooding back and I think that only lasted for a couple of months. It makes you stronger as a person, it definitely does it makes you have a different aspect on life, negatively and positively like when I, when one of my friends has a kid and they’ve got a cold or, you know, I’ve gotta call 111 or something or you take him to doctors and that, he’ll be fine like I’ve got no sense- with that I’m not sensitive about that at all I’m like literally he’ll be fine, it’s a bit of cold.
Feeling as though they were changed

Several parents described how they felt changed by their experiences in hospital with a sick baby. Amy’s daughter was in hospital for several weeks with exomphalos*. Once she was home, she felt that she had lost her sense of who she was. What was perhaps a normal feeling for a new mother was made stronger by her experiences with her daughter’s surgery and recovery. She didn’t feel she coped very well during that time. 

Joe says that her role has changed since having her baby, she had two other children with medical problems and feels she is now in charge of “team ill” while her husband is in charge of “team well”. As she looks back at old photos, she feels her identity has been lost along the way.
 

Joe feels her identity has been lost along the way.

Joe feels her identity has been lost along the way.

Age at interview: 36
Age at diagnosis: 34
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He does ‘team well’ and I do ‘team ill’ that’s very much the balance now, he gets all the kids who are well that day and goes out and does stuff and I keep the kids who are ill and need medical attention. With [Name] not being able to leave the house for eight months that was really tricky he went out with the kids and did stuff and I hung about the house with [Name]. And our conversations revolved around what are you doing with the kids today and what am I doing with the kids today and he didn’t particularly get that involved with, with hospital appointments and [Name of partner] wouldn’t have a clue how to ring the dietician and make an appointment, that’s my job mum does medical stuff, dad does going to the park, fun stuff. Which often I look and thing ‘Grrrr’ but then I’m such a control freak I can’t help it, yeah I find it really difficult to hand that over. Yeah our relationship, there’s glimmers of what it used to be like but because of the stress of having [Name] and having all the other children with their diagnosis’s at the same time, our relationship is, we’ve become, our relationship has become parents and not partners, we’ve kind of lost Joe and [Name of partner] along the way. I looked at our wedding photo the other day and I thought I don’t even remember what it feels like to be that woman, I know what it feels like to be the mum of a kid with complex needs but I don’t remember what it feels like to be the parent of a regular kid or even just me. Yeah I feel like I’ve lost my, there’s, lots of identity has been lost along the way, I feel like I’ve lost my identity and I’ve become a medical mum I feel like me and my husband have lost our, we haven’t lost our marriage that’s not the right thing to say because I couldn’t have survived through this without [Name of partner] he’s been my rock through the whole thing but we’ve definitely lost our spark. I go to bed at night and I want to go to sleep I can’t even be bothered to have a cuddle [tears up] and that’s wrong isn’t it because I know that fear is that I will have to get back up so if I don’t fall asleep when I’m in bed [laughs]. Yeah and finding people to look after your kids when they have complex needs it’s tricky yeah. And when we go out, we just talk about the kids [laughs] because we’ve not done something together for so long we have no common, our common ground is family life, of complex needs family so that’s what we talk about yeah. We need to regroup at some point when everyone’s feeling a bit better I think yeah. Tricky. 
*Footnote definitions:

Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

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.

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.

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.

Exomphalos 
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.
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