Parents’ experiences of neonatal surgery
Coping when a baby needs neonatal surgery
Parents whose baby needs surgery face a long and emotional journey, from the initial shock of diagnosis, to worrying about their baby’s health after birth, the surgery itself and recovery from their operation. The outcomes were often very unpredictable and uncertain. Parents we talked to described their often very different ways of coping (and sometimes not coping) during this emotional marathon.
Zoe and Barbara both had positive messages for other parents. Zoe’s daughter had gastroschisis*. She said the first few days were the hardest but there were some positive experiences along the way.
Zoe said that in the midst of all the worry, there were positive moments to cherish.
Zoe said that in the midst of all the worry, there were positive moments to cherish.
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.Barbara’s daughter had gastroschisis. There were lots of joyous moments as well as lots of heartache.
Barbara’s daughter had gastroschisis. There were lots of joyous moments as well as lots of heartache.
Parents’ journeys were all different, but many described how hard it was to keep going when they didn’t know where the end was. Being in hospital, often in neonatal intensive care (NICU)*, for weeks and months on end, was stressful and a real strain. Fiona and Mike described how hard it was to witness some of the sad outcomes for the babies around them, as well as their intense worry for their daughter. Although for the most part people felt they had no choice but to keep going, day by day, it was common to experience moments when they just broke down. Emma remembered, ‘That was my breaking point day. Embarrassing looking back now, but I think everyone has one.’ Amy said she wasn’t prepared for the strength of her emotions, she was so scared for her daughter.
Fiona and Mike said they both had emotional breakdowns at some stage during the 10 months their daughter was in hospital. There are things they wish they could forget.
Fiona and Mike said they both had emotional breakdowns at some stage during the 10 months their daughter was in hospital. There are things they wish they could forget.
Yeah and this is.
Mike: two or three months, if we’d known if we’d know we’d be there ultimately for ten months then you just wouldn’t, you’d have cracked, at that point. Knowing that you’ve got that much more ahead of you and actually, worse times than you’ve already experienced pretty bad times so.
Fiona: And also we were [inaudible speech] I used to see [son] once a week, I think when I was and that was really hard. And it was almost like we were two separate families with you and [son] and then it was.
Mike: Yeah, and he…
Fiona: [daughter] and I.Amy was terrified about the outcome for her daughter who had exomphalos. For her, looking at the worst case scenario was her way of coping.
Amy was terrified about the outcome for her daughter who had exomphalos. For her, looking at the worst case scenario was her way of coping.
I can’t speak for everyone but I wasn’t prepared for that and what do I do with myself and, and who am I? My identity was a mother that, do you know, that was it. And then, when we finally left after three months, I just I didn’t know who I was anymore and I didn’t, I was so scared, you know, and here I was this older mother and the expectation that I would be fine going home with this baby and I was petrified. I had been in hospital where she’d been monitored every second of every day. I remember the first week we moved out of ICU, she took a turn, her breathing, when we were on the unit. So I was alone with her in the room and her breathing became laboured and I was petrified. It was in the evening. The nursing staff was, you know, skeletal and it was smaller staff. Not the doctors walking around and I was petrified. I was so scared watching her and feeling like I can’t do anything, where’s, you know, please come quick and I mean the nursing staff was excellent. They came to and they, I think they had to calm me down more than, you know. She quickly was fine but it really, really frightened me and I thought, will we have to go back to ICU and is this a longer road? And I think you read into every little thing that happens to your child. You, I don’t know, for me, it was just making it bigger. But and my husband was saying, you know, “Is it, are you just.” I, he, he was just kind of phrasing it like, “You’re seeing everything negatively.”
But I think for me, it just was about how I coped. I had to look at the worst case scenario, like when she was in me and I still was, “She might die.” And I had to keep on a path for me, you know. Some people might be different, they might just think, “My child is going to live. I’m going to stay positive and optimistic and this is how I have to cope.” For me I had to always think that she might still die and it was horrible to hold that beside you. But for me, it would be the only way I could cope if she did. I had to be realistic I guess. I just always kept that and I probably asked, you know, the surgeon more than once about, you know, what’s the possibility? And I mean he can’t tell but I was still asking.
* 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. Julie said she honestly wasn’t sure how she coped.
Julie said she honestly wasn’t sure how she coped.
Next question [laughs] I don’t know and that is the honest answer I don’t. I, you know, I don’t know how, if I’ll, I will cope with [son] having more surgery cos like I say his last surgery was when he was, his last major surgery was when he was two and I just used to hide away, didn’t want to talk to them because it was, you know, always negative news that you were given and then I found out since then that, cos this was right when they started introducing like the carers to him, that were going to be looking at after him over night. And the one that’s still here, she told me a couple of years ago that she was told that [son] wasn’t going to make it. And it’s like even then, even though I knew he was here I knew he made it it’s like, you know, a knife in your heart. And I knew it, I knew it I just didn’t hear it because I didn’t let them tell me.
But you know this stuff don’t you just from looking at yourself and, you know, being there and yeah.
Yeah. And it never goes away, you know, even, even now and this is the other thing that, you know, that I feel that professionals need to take on board just because you’re seven years down the line, it doesn’t meant to say that it’s all gone away because it hasn’t. Because it’s very much still there, you know, I still panic that [son]’s diaphragm is going to come away, I still panic that all the scar tissue in his stomach is gonna you know, screw up and because if that twisted and triangulated, he’d be gone, you know, there’s still and it petrifies me, just as much as it petrifies [son] of wanting him to have more surgery because it’s never gone smooth, you know, each time we’re told well he’s older now so, you know, he’ll cope with it better and it’s like well, don’t happen.
After yet another setback, Nicky started to lose her faith in her son getting through. She rang the BLISS helpline and had counselling to help her cope.
After yet another setback, Nicky started to lose her faith in her son getting through. She rang the BLISS helpline and had counselling to help her cope.
And how has it impacted you two as a couple, it’s been a tough year?
Yes definitely and some times have been easier than others and we’ve certainly pulled together very strongly at the beginning and then when I started to fall apart I think I started to pull away but that got, once I had the counselling then that very much helped on that front. And I think now it’s just, just different isn’t it because there’s three of you in the equation and there’s just very little sort of couple time if you like because usually you see by the time [son] goes to bed I may even have gone to bed before him to try and get because I'll be the one who usually gets up in the night or gets up to fed him which can be, sometimes it’s not until 7 ‘o’ clock but it can be four, five, six so yes there’s, it’s very different but it’s just how it is isn’t it.
It passes
Yes, we’ll maybe get a babysitter one day but.Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.
Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.
* 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.
Parents had different ways of coping with their worries and the uncertainties surrounding their baby’s health. Many described the adrenalin kicking in, just getting their heads down and getting through it.
Louise’s twin son had congenital diagphragmatic hernia (CDH)* and she was surprised at how strong she was. “My sisters commented that they were surprised because I’m a worrier as well, like my mother, but they were surprised how strong I was, but I think I was, no this is, he’s going to be fine and I’m on a mission to get through this.”
Rebekah’s daughter was in hospital for weeks; adrenalin and ‘going into overdrive’ got her through. Her husband was more emotional.
Rebekah’s daughter was in hospital for weeks; adrenalin and ‘going into overdrive’ got her through. Her husband was more emotional.
And who, so you and your husband were obviously spending a lot of time together supporting each other.
Yes.
Who else was giving you support in that time?
So everybody, everybody was amazing. So some really close friends who live up the road they were helping with babysitting, my mum my husband’s mum everybody says they’ll, you know, they’ll do whatever you need and it’s really good. But yeah mostly close family and close friends, yeah.
Okay, yeah. And do you feel did you have enough support, enough emotional support in that time?
Yeah I’m not really an emotional support person [laughs]. for me as long as someone’s explaining to me what’s going on I’m fine it’s when people aren’t communicating that’s what will rile me so I’m, I’m pretty good just bumbling along as long as people are explaining things. my husband was a little, he’s a little bit more emotional than me he found things a little bit more difficult like when she had the meningitis and he’s a lot more of a worrier than me. But yeah so I would have to try and explain things clearly to him I think he’s quite good, he sort of looks to his mum when he needs to talk things through as well.
Some found that being positive and staying hopeful was the best way for them to cope. Jane said, “I still do tend to cope with things by just making a joke out of them, I think that’s just the kind of person I am.”
Pamela said that when her son was born prematurely she and her husband made a decision that the only way they were going to get through was to be “relentlessly positive”.
Others felt that pessimism, exploring and facing up to the worst-case scenario, was their way of coping. While Amy E said her husband blocked out what was happening, for her facing up to the worst was her way of coping. “Even if it was horrendous I wanted to be there so I knew, cos I had in my head what I imagined would be worse than it was gonna be.”
At one point one of the nurses turned to Emma and said, “You are planning your son’s funeral, and you [her husband] are thinking of him being 18”. She felt that this was the only way she could cope.
There were also points when the worry got too much. Emma said her husband just had to leave the hospital for the whole of their son’s surgery, the situation was so intense.
"He disappeared from about 11 ‘o’ clock in the morning didn’t come back until 6 ‘o’ clock at night, the whole surgery, just went. He said, ‘I couldn’t cope I was gonna thump someone for holding him down and just making him scream’ he was that upset and that fed up having people hold him down, even though it’s for [son]’s good, as a dad he was like ‘I wanted to thump one of them so it was better for me to walk away.’ And it wasn’t that he was bad against the doctors it was just it was an intense situation.” Emma
Some parents felt they needed to shut down or bottle up their emotions. Shanise said, “I think my emotions and my feelings were the last things to think about.” Pamela said her husband was a “bottler-upper” and “better at shutting stuff out.” Mike said he “tried to keep it all inside” and there were parts of the experience, “just don’t think about it”.
Coping as a couple
Parents often found that they coped differently with the stress and worry, which could be a way of helping each other get through. Some talked about how they would have opposite approaches; one positive and one negative, or one emotional, and the other practical. Rebekah said she herself wasn’t really “an emotional support person” but her husband was more emotional and more of a worrier. Adam felt he had to prise his wife away from her daughter’s bed during the surgery. She wanted to sit by her cot and wait, but he forced her to eat some lunch and walk around the hospital grounds.
Sally-Anne described how her husband’s strength and positive approach helped her through.
Sally-Anne described how her husband’s strength and positive approach helped her through.
Yeah.
Simon: And, I mean it’s easier to talk about it now 13 years on because of what we know because we found out because of where we’ve been, who we spoke to and everything like that. But there’s, you’ve just got to draw positives from it all and if you start looking negative, it’s a negative atmosphere, you know, I mean everything starts to feel bad then whereas if you constantly drawing the positives, yeah you can have relapses but you pull through, there’s your positive. And there’s, you’ve just got to find the strength, draw it off people, doctors, nurses your own child. And you've just gotta move on through it.
Sally-Anne: ….No two ways about it I looked at everything as a negative.
Simon: I mean you walk into intensive care unit you’ve got a little bed with a little child sitting there with thousands of wires coming off going all over machines and you’ve got medicines and you’ve got this at the end of the bed you’ve got the board the electronic board. All you can hear is the sounds going bing bong bing, bing bong constantly just drums through your head. As bad as what it looks it’s there for a purpose its doing a job and that, that’s what a positive is, you know what I mean it’s as I say as bad as what it looks, it’s doing good.
Sally-Anne: And that’s that was one of my, that's one of the things that I pulled off Simon, you know, what I mean, every, everything that I looked at as a negative Simon would show me a positive and that's why I've always said that Simon is and was my rock and he always will be, all the way through there. Because in and throughout even now to this day, you know, when [son] has his issues Simon will always find a positive and when you’re dealing with something like that if you haven’t got the ability to find a positive yourself it’s a very dark place to be. But when you’ve got somebody who’s got the ability to find that positive and to show it you, it makes it easier, you know, because Simon, I don’t know how he done it and even now to this day I will never, ever, ever be, you know, I’m eternally grateful for what he did because when I was looking at everything in a negative way as I think, most mums would do Simon would point out the positive. You know, when I first walked into ITU and I seen all those machines I was like oh my word, do you know what I mean, it scared the living daylights out of me and then Si turned round and says ‘But Sal them machines are keeping him alive, them machines, you know, its them machines that are doing what they need to do’. And he says, you know, he says ‘you watch give it a few days and one by one they'll all start coming away’. And straight away it was okay it’s a bad situation, it’s a dark situation.Amy’s partner coped by being all light-hearted. She knew it was helpful for her and his way of coping, she also got pretty annoyed by it.
Amy’s partner coped by being all light-hearted. She knew it was helpful for her and his way of coping, she also got pretty annoyed by it.
James and Clare’s son was diagnosed with Hirschsprung’s disease. They coped very differently as they approached his operation.
James and Clare’s son was diagnosed with Hirschsprung’s disease. They coped very differently as they approached his operation.
James: I just wanted to fix it.
Clare: Getting it dealt with yeah.
James: I didn’t want to get involved in emotions because that would not help because if I start crying, you know, as you were, then we’re both just crying and nothing’s happening so I was being, it was actually bloody hard to be like that you know, it’s fine to do it in a work sense, you know, and we do that all the time, but actually when it’s something that important to completely remove yourself from the emotion and just be tell me what I need to know, you know, you mentioned the questions there, that was actually my idea to do kinda do like a little thing on it and my priority at the time was to kind of help [mother/wife], at the time kind of focused on something other than the negative. But I think yeah having that, that appreciation of how you should manage yourself.
Clare: Some support with that would be really nice.
James: But also how you support your other half who is probably at that point in time more close to the baby than you are because of, you know, breastfeeding, you’ve just borne this child all this kind of stuff how you manage them and help them is incredibly hard. In the build up to, during and after, I would suggest. So yeah I think that might be something to consider, I don’t know how it will work maybe that’s up to me to arrange.
How, just tell me a bit more about that, what would have, what would have been helpful, what, something to allow, something to allow you to feel emotions or?
James: No, no I don’t- I was so not at the point where I wanted to feel emotions. Cos that wasn’t helpful, it probably would have been in reality.
Clare: I think some sort of talking therapy or something might have been useful to just support the process between, okay you’ve had this big diagnosis and you’re gonna have this operation and, you know, what happens after that is still quite up in the air albeit, you know, there’s a worse option but, you know, we still didn’t really know quite how it was all gonna pan out and what the implications were gonna be longer term and we just kind of trying to get our heads round it all. But just, you know, the sort of talking therapies that you hear about I think probably would have been useful, it would probably be quite difficult to get people to take that up but I could imagine people would be quite kind of nervous of that but even just, you know, some links with, with the support groups with the parents groups. I mean I know that hospital now it was literally forming when we were there being treated after the operation the support nurse started to do a lot of very active work setting up support groups but and putting you in touch with a couple that were kind of just starting themselves that had been sort of brewing.
And actually it would have been really helpful to have been put in touch with them before the operation and I know now from those support groups that there are quite a lot of mums and dads that come onto the Facebook pages or the website or the e-mail groups and will say, we’ve just been given this diagnosis we have no idea what it means we’re expecting this big operation and, and I look back and I think of our experience and I see their experience and actually, I think it’s probably really good for them that they’ve got that now, they’ve got that outlet, they’ve got other parents with a shared experience but also with a really good perspective, because most of us that are still involved in it, you know, that many years on are able to say I know it seems like the worst thing in the world right now but it’s not, it’s gonna be okay, you know, one way or the other.Sonya and Adam felt they had been set their first test as parents and passed.
Sonya and Adam felt they had been set their first test as parents and passed.
Adam: Yeah.
Sonya: I think we passed.
Adam: Yeah I think it was really strange for me because I’d just gone back to work and I was in a meeting when Sonya called and I thought this was a bit unusual so I went out and I just literally I said, ‘I’ve gotta go’ and just left the building, so it was within sort of for me I was snapped, I was in work mode and an hour later I was in the emergency ward so it was even, it was even odder.
Sonya: It was terrifying.
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.
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.
Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.
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 (pooing) normally.
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