Parents’ experiences of neonatal surgery
Emotions, counselling and support when a baby has neonatal surgery
The emotional impact for parents of having a baby who needed surgery was often huge, during their pregnancy, when they were in hospital after the baby was born and once they were home. The experience of spending time away from home with the baby in hospital could feel very isolating. Some mothers said they felt guilty and a few said they suffered from anxiety, panic attacks, and flashbacks. Some mothers we spoke to were offered anti-depressants and therapy. Fathers were also deeply affected.
Amy’s daughter had exomphalos*. She said she was unprepared for the strength of her emotions and didn’t know how to cope.
Amy wasn’t prepared for the emotional rollercoaster she was on. She was petrified to go home with her baby. In hospital she had been closely monitored and had doctors and nurses all around.
Amy wasn’t prepared for the emotional rollercoaster she was on. She was petrified to go home with her baby. In hospital she had been closely monitored and had doctors and nurses all around.
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 nd 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 was just kind of phrasing it like, “You’re seeing everything negatively.”
Isolation
Several parents talked about how isolated they felt while they were in hospital with their baby, and how this impacted on their emotional wellbeing. This role more often fell to mothers, as women’s maternity leave and pay rights are usually more extensive than men’s. But fathers also experienced loneliness trying to look after other children at home or going back to work to keep earning enough for the family. Parents were often in hospital sitting by their baby’s cot side for weeks or months on end, eaten up with worry. Once home, there were the challenges of looking after their baby and being around other parents and babies was very challenging for some. Jane couldn’t be around other babies, because it was too upsetting when her baby was so ill – “I was a bit cut off I think”. Shanise said, “I felt really isolated and I’ve never felt that lonely ever, ever before, like it was horrible.”
Nicky was very isolated when her son was in hospital and only her parents and partner were allowed to visit.
Nicky was very isolated when her son was in hospital and only her parents and partner were allowed to visit.
Family mainly, it was very isolating, very isolating because at [local city] the only people who are allowed onto the unit are grandparents so my parents would come every week and [husband]’s parents would come most weeks. But you couldn’t have anybody else there and by the time you were sort of talking about, I was on the unit as much as I could be because we were starting to breastfeed and build that up so I was there for as long as I could be during the day to get as many opportunities to get established with that because the quicker I got established the quicker the tube comes out the quicker he can come home, it was another milestone to coming home. But nobody else could come and so it’s, you know, I just found it, the last few weeks really very isolating and I just, you know, I’d have e-mail contact with family and a couple of friends and I just craved that, and the outside world information and the real world and what’s going on in your life as well it’s nice to have some normality in this mad world that we found ourselves within, so yes it was very isolating towards the end because of the restrictions with visiting and because it had been so long as well. It wasn’t too much of an issue up until probably the last month or so and then it found, it just felt a lot harder.
Not surprisingly strong emotions were common around the time of diagnosis. But longer term emotional and psychological impact was also an issue, including anxiety, flashbacks, post-traumatic stress disorder (PTSD) and panic attacks. Some parents were prescribed anti-depressants. Donna was recently home from hospital with her son who had an operation for Hirschsprung’s disease*. Her mum had recently died, and she had taken voluntary redundancy “I’m struggling with my anxiety”. Several mothers we spoke to either had a diagnosis of PTSD, or were concerned they were suffering from it. Joe said, “yeah post-traumatic stress is definitely something I’d say I definitely suffer from it, I know my teenage daughter definitely suffers from it cos she can’t stand to look at [Name]’s tubes, she can’t stand to be in the room when the children are crying.”
Amy E is a police officer. Her daughter had gastroschisis and now she has flashbacks of driving a police van with the blue lights on. She was pregnant with her second child when interviewed and very nervous whether her new baby will be OK.
Amy E is a police officer. Her daughter had gastroschisis and now she has flashbacks of driving a police van with the blue lights on. She was pregnant with her second child when interviewed and very nervous whether her new baby will be OK.
So she’s a midwife locally?
Yes she’s a team, she’s a midwife in [county] she’s like a screening co-ordinator midwife slash counselling midwife, so if something’s not quite right in the scan you go and see her and, you know, she can, she’ll talk to you she’s a lot of experience. And my community midwife’s brilliant as well, [community midwife] she’s, I’ve got the same one now I mean without her just I would see her every week or twice a week sometimes and just when I was pregnant, just having her tell me that her heart rate, her heart was beating, you know, cos she didn’t move much and the reason why she didn’t move much was because she had so much bowel she was like she got stuck she couldn’t move. But [community midwife] really did keep my mind at rest, you know, and with [midwife] as well with the both of them so I really did appreciate having that level of care locally. Because a lot of the time consultants they’re so busy you can’t phone them up and ask something you don’t, I don’t know what I’m talking about half of the time so I would say I’ve got this bleeding and they would say that sounds absolutely fine that’s normal don’t worry about it rather than okay come into hospital or I’ll phone and say I don’t think she’s moving and they’re like get yourself in, come in. So yeah they was, those two the community midwife and [midwife] were brilliant.Shanise started having regular panic attacks while her son was in hospital with gastroschisis.
Shanise started having regular panic attacks while her son was in hospital with gastroschisis.
And you mentioned earlier about having anxiety attacks and panic attacks was that throughout that period or?
Yeah to be honest I think it got to the point where I was literally having one like, it wasn’t so much when I was in hospital it was when I was at home on my own, so when [partner] was doing a shift at the hospital that was when I would have an anxiety attack he probably won’t know this but the only thing that stopped the panic attacks and it felt like I knew when one was coming cos I’d have like a pain like underneath like in my rib cage, I used to go out for a cigarette and it used to calm me down and it used to try to focus my breathing and I’d listen to music. So I knew how to bite them in the bud, not bite them in the bud but I.
Nip them in the bud?
Nip them in the bud that’s it, nip them in the bud as soon as it was happening so, and then they stopped so, on my own, on their own, so.
And did anyone when you were in hospital feeling down, did anyone offer counselling or emotional support?
No, I think it was quite hard cos most mums or any other had their partners there but my partner was working, he used to work 12 hour shifts so two 12 hour day shift so he never used to get home until, get to the hospital until about 7 or 8 ‘o’ clock where he could only be there for an hour. My mum obviously worked so she could only come now and again like so literally all day until about 6 or 7 ‘o’ clock I was on my own with there wasn’t really anywhere to go either, apart from the canteen and you don’t really know anyone there was like it was a massive hospital there were people there for different reasons there was nowhere to go there was, there was no support from that side at all.
So you felt very isolated?
I felt really isolated and I’ve never felt that lonely ever, ever before like it was horrible yeah.
Parents described finding support from a variety of different sources:
- Other parents
Access to online communities of parents from around the world who had had a baby with a similar condition was invaluable as a source of support. “The main support really, throughout the pregnancy, has been other parents going through the same thing.”(Claire). Amy clearly remembers another mum with an exomphalos* baby saying to her, “‘This will be a memory one day.’ And she was right and I needed to hear that at that time.”
- Family and friends
Family and friends were central to supporting parents emotionally through the stressful weeks and months their baby was in hospital and recovering. Alix and Antonio valued both the emotional and practical support they received from their family. It helped that they could do basic things like bring them food and clean clothes, as well as provide emotional support. Rebekah said it was incredibly helpful that family members could update others so that she didn’t need to text or speak to everyone. Victoria described her mum as her “right hand man” as she sat by her son’s cot side when her partner was at work. Zoe’s daughter was in a hospital several hours away from home, but her family were “always at the end of the phone”.
- Staff
Nursing staff on the neonatal intensive care unit (NICU)* and other acute wards often played a vital role in supporting parents. Victoria said that the staff on the unit were amazing, encouraging her to take a break and look after herself, “They used to tell me off for monitor watching.” Shanise was starting to have panic attacks, and received a lot of support from one of the neonatal liaison staff who would sit with her and helped her through.
Zoe said the nurses on the unit were amazing and made getting through it possible.
Zoe said the nurses on the unit were amazing and made getting through it possible.
Once they were home, health visitors and GPs were another source of help. Jane really appreciated that her health visitor would come and see her at home so that she didn’t have to go to baby clinic with her daughter, as she found that very upsetting.
Counselling and therapy
Several parents had been referred to, or sought out, counselling or therapy. This included counselling in hospital before they left and at home through their health visitor or GP. Donna was having cognitive behavioural therapy (CBT) (talking therapy), Nicky had telephone counselling sessions through the charity Bliss and Emma went to a group counselling sessions at the hospital. Julie had anti-depressants for periods of time. Fiona and Mike were offered counselling when their daughter was almost ready to leave hospital after several months. They were aware they had become institutionalised: “other parents said your children have to be weaned off the machinery and so do the parents.” Nicky said her counselling sessions were helpful, because it was great to have space to talk to somebody unconnected with the NICU and staff. “Yes, just that space to talk to somebody outside, disconnected. The staff on the unit were fantastic but there was only so far I felt able to go with them because you still needed to maintain that positive relationship.”
Victoria felt very supported by the woman she was seeing for therapy to help her come to terms with her experiences in hospital with her premature baby.
Victoria felt very supported by the woman she was seeing for therapy to help her come to terms with her experiences in hospital with her premature baby.
And where have you got support from?
Our families have been amazing you know, without families I think we would have been… I think without our families because [Partner] had to work I’ve got to say my mum was absolutely amazing through it she’s been here for both, you know, for both me and [Partner], she’s great with Bobby now. She was kind of like my right hand man because obviously [Partner] couldn’t get the time off and she’s been great. But families in general have been absolutely amazing anyway - so they’ve been absolutely amazing our families. We’ve had a couple of good friends that have been the I’ve got to say the support group was absolutely great because they knew exactly what we were going through, they knew, they’d been through it themselves, you know, it was, they were amazing really. The staff on the units were amazing, you know because they knew what was going on with Bobby they used to tell me off for monitor watching, they’d be like ‘Right, will you stop watching the monitor, I’m actually gonna turn that monitor away if you keep looking at it.’ Because you do get obsessed with them, it’s so, you do get obsessed with them. But yeah, yeah it’s been, we’ve, sometimes it’s quite a personal journey to be honest because you, you, you know, the only other person that knows how you feel is, is [Partner] or you know and so yeah.Joe said her health visitor and GP had been amazing. They have suggested counselling but she doesn’t have the time, she is too busy caring.
Joe said her health visitor and GP had been amazing. They have suggested counselling but she doesn’t have the time, she is too busy caring.
Amy E had poor experiences with a counsellor, but was then offered someone through her work as a police officer, who she has found very supportive.
Amy E had poor experiences with a counsellor, but was then offered someone through her work as a police officer, who she has found very supportive.
How often did you see her?
I saw her once a week.
For how many weeks?
For well I think it was for about ten weeks until the end, she was really lovely she was she was just nice having, because she’d a level of knowledge of midwifery as well and she’d gone away and researched what was wrong, she didn’t know about what was wrong but she’d researched it, I felt like when I was talking to her that she actually had some level of knowledge of what I was saying rather than just anybody who, because obviously she’s a police counsellor she’s not, but they do counsel you for anything. And the fact she said to me ‘Oh I handpicked you out of, out of the bunch’ I thought well she’s chosen to help me. So she did really help me she taught me some relaxation techniques that helped me in intensive care as well just helpful when you feel like you’re completely out of control how to get yourself back in the room and that did help me a lot a couple of times when I thought like I’m about to explode. I can’t even describe it any other way.
Sadly not all babies survive. Hayley and Thomas lost their son when he was 7 months old. They described the silence that engulfed them after he passed away, after the months of busy noise on the ward. He died on a Friday afternoon so they had a weekend of limbo before they could contact the bereavement services. Thomas said Hayley gets the “raw end of the stick” in having to talk about losing their baby more.
Hayley and Thomas said that silence after their son died was the hardest thing. They have been offered great support through a follow up meeting with the medical team who cared for their son, and a bereavement counsellor.
Hayley and Thomas said that silence after their son died was the hardest thing. They have been offered great support through a follow up meeting with the medical team who cared for their son, and a bereavement counsellor.
And that was four or five months ago now?
Hayley: October, end of October.
Thomas: Five months ago now, yeah five months ago next week.
Hayley: Yeah.
Thomas: But yeah you know it’s just.
Hayley: Feels like a lifetime ago.
Thomas: It does, it does, it feels as if things went really, really, really slowly since it, if you think the years fly, the years are always flying by but with this it felt like years rather than months in that sort of way.
It must have been, I mean hard on so many levels but-
Hayley: It’s the weirdest thing because it’s just like the silence.
Thomas: It’s.
Hayley: The only way to describe it, when you leave that room just silence, nothing.
Thomas: And it’s that sort of thing-
Hayley: And our family went because I think they thought that was the right thing to do didn’t they.
Thomas: Yeah.
Hayley: And we left, literally left the PICU to nobody, nothing, we didn’t even have our home to go to. We didn’t know what we were supposed to do either, we was-
Thomas: Yeah they let us stay at the hospital because he passed away at the weekend as well.
Hayley: He passed away on the weekend.
Thomas: It’s the weekend he passed away.
Hayley: There was no bereavement services there was no support people, there was nobody, even the, what is it called the where they go.
Thomas: The mortuary.
Hayley: The mortuary was closed because it was the weekend because, there was this, just this craziness.
Thomas: Yeah.
Hayley: And there was nothing there were no funeral services open, so, we couldn’t, we didn’t know what we were doing, we’d never planned a funeral in our lives.
Thomas: But then, that’s when our parents were really good.
Hayley: Our parents were really good because they were like, don’t worry this is what you’ve got to do and, you know.
Did you start that that weekend or did you wait till Monday.
Hayley: No we waited till Monday.
Thomas: We waited until the Monday but I went to.
Hayley: Which actually in hindsight it was quite a good thing.
Thomas: Yeah it was.
Hayley: As it meant you didn’t rush into anything.
Thomas: And this thing as well, I went to Mass on the Sunday and I’d spoken to the priest and the priest had given, give us a better direction where to go and he phoned the funeral directors and said look this young family’s gonna be in they just lost their-
Hayley: And they were lovely weren’t they?
Thomas: They were sort of ready for us coming in and they were excellent, absolutely excellent.
Hayley: The nurses in the PICU, because we went up there and asked them what we do next.
Thomas: Yeah they done their best.
Hayley: They done their best but obviously that’s not what they do, they do this bit.
Thomas: And thankfully, and thankfully from their perspective it doesn’t happen very often in that sort of way so it’s not something that comes round thankfully on a weekly basis. So it’s out of the blue for them when it does happen.
Hayley: But the meeting was really important because it helped you didn’t it cos you was whirling around questions and this and that and could they have done this could they have done that. And for me it made me, let me ask, because it’s really weird when you’re in the hospital and something bad happens or something goes wrong you have, you have, you speak to them after and you talk about it or what happened here, what happened there and what could we have done. But when it happens at the end there’s none of that you just go, you don’t really know what just happened. You know, and when you’re, when you live in the hospital and you’re used to that talking about what happened what we did this we did that and at the end there you just don’t, you don’t, you only.
Thomas: They kept us out of it.
Hayley: Yeah and you don’t know what’s happening because it’s so fast and they’re just doing what they have to do so they don’t talk to you about it and actually it’s at the end there that you need that like closure of the medical stuff.
Thomas: And it helped, it helped me to cope cos I remember-
Hayley: Because that’s what it was it was closure of the medical stuff and as soon as we had that meeting I hardly ever think about his medical life, I think about him.
Thomas: And it helped from that sort of therapy point of view going back to the hospital because I remember leaving it the day after he’d passed away and it was really bad leaving the hospital without him for the last time and I remember a couple of days later when I had to register his death in [local authority] and I wanted to go a route where it avoided the hospital in that sort of way, but as soon as I walked through the door of that hospital it felt it was [son]’s home.
Hayley: Yeah.
Thomas: It felt, they kept from the road up into the car park it was absolutely terrifying, daunting and sad, as soon as I walked through that door something just sort of, some sort of spirit just sort of - it’s his house in that sort of way and all these good memories came back.
Hayley: And they a gave us a level of support as in they referred us to a bereavement counsellor who said that she had so many e-mails from different professionals about us and the support that they wanted for us and we thought that was really special-
Thomas: Yeah.
So what support have you got from the bereavement specialist?
Hayley: So we had, I’d see her every couple of weeks, [husband] comes now and again don’t you, you stopped coming really.
Thomas: Yeah it comes, depending on my work commitments, I’ve had a hell of a lot of time off work, they were absolutely amazing with me and I just, I don’t want to take too much time off if you know what I mean.
Hayley: So I see her every two weeks but she’s at [specialist hospital]’s so sometimes it’s nice and sometimes it’s difficult.
Yes.
Hayley: But I prefer to see her because she actually worked in the neo-natal unit so she knows the life that we had and stuff like that.
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.
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.
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.
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.
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.
Copyright © 2024 University of Oxford. All rights reserved.