Parents’ experiences of neonatal surgery

Preparing to go home after neonatal surgery

Being able to bring their baby home was a huge step for many parents. It was a positive sign their babies were on the mend from their surgery, and the end of many days, weeks or even months in hospital. But it was also frightening to leave the “safety net” of hospital, doctors, nurses and equipment. Fiona and Mike were aware they had become “institutionalised”, as they put it. Louise remembers feeling very emotional as she left hospital with her twins, one of whom had surgery.

As they left the hospital, Louise started sobbing. They were happy tears, but she also felt daunted to be bringing her twins home.

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Age at interview: 32
Age at diagnosis: 26
And what was it that he needed to achieve before he was allowed out? Breathing on his own. 

Breathing on his own at first he was still getting tube fed and then feeding and then there was sort of normal baby things that they need to achieve before they come out, feeding on the bottle.

And was that relatively easy or did it take a?

It took a little while but that was, that was fine, I think after he could breathe we were like this is normal baby stuff now and fine we were happy at that point we just couldn’t wait to get him home with us so we could get started.

Yes because it must have felt like everything had been on hold.

It was awful yes it’s, it’s but you see the people coming in with balloons and teddies and you think well that’s not going to happen. But I remember when we took [second son] home we were so relieved and excited we couldn’t wait to get him out of there but we were sitting in the car on the way home and I started sobbing and my husband was like, ‘Are these happy tears?’ I was like half yes and half no. I’m so scared we have two little babies to actually look after now after all that and it was like we’ve got to deal with the practicalities now of actually looking after two babies which I think because we were so ravaged from the experience we were like how are we going to cope.

Yes, which of course I’m sure you did.

Yes, yes, you do.
Losing the safety net

Many parents described how frightening they found taking full responsibility for their baby, after so many weeks in hospital with often such acute care. Victoria’s son had been born prematurely and needed surgery for necrotising enterocolitis ( NEC)* “I don’t think anyone can prepare you for coming home because you are going from having that complete support from doctors, nurses, everybody, to having no-one”. Jane and Ally explained that because they had other children already it wasn’t as daunting as it might have been, and Jane was keen to push staff to hand over care quickly. But for Michelle the thought of leaving hospital was like taking away “the biggest safety blanket you can possibly imagine”. Parents described how hospital staff helped them prepare gradually for this moment by small steps, sometimes called a ‘graded discharge’.

Gradual handover

Often the first step towards getting home was taking their baby out for a short walk or visit to the park. After weeks in a hospital ward, or neonatal intensive care (NICU)*, this was a huge step for parents. Fiona and Mike took their daughter to the park, Sally-Anne and Simon took their son out round the city. “To some people that’s not a lot but for us that was a big thing cos it was the first time us three had been able to be together as a family.” Sally-Anne

Amy was so happy to take her daughter out for the first time. The hospital lent her an old fashioned push chair, and she was thrilled to do something normal.

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Age at interview: 39
Age at diagnosis: 33
To bring her home was about her tummy being closed up so the muscles and the skin, her, oh well you know, at least it had to all be back in, you know, slight risk of infection. And then also her breathing and, actually, I had prepared myself so much for the exomphalos* that I hadn’t, hadn’t thought about other issues. So the breathing, you know, it was, you know, there was a chance there’d be other problems but I didn’t realise how much the breathing would be an issue. So it was really about her breathing on her own that was, you know, the, the hurdle we needed to reach and I could tell things were improving day by day, when I could bring her that little bit further. So it came to the point where there was less things attached to her. So I could move her that little bit, so I could hold her a little bit easier or there came a time when I could bring her to the bed on my own and that felt so normal. And it was such a, you know, a little thing. But I was so excited that I could take my baby to the bed and the nurses started letting me do some simple things or we’d give her a bath. I remember the first time they let me take her out. I was so, we went to Baby Gap. To buy her a winter outfit. It was, she was born in September so we went home in December fifteenth, we took her home and I remember going out, taking her out of the hospital and bundling her up. And she still had a tube in and, you know, we were going into, into the store and people are gawking at this baby and we’re in this really old fashioned pushchair that the hospital happened to have.

And, I’m pushing her along. I was just so happy. It was freezing that night, freezing. We had her totally wrapped up but I was like, this is so normal. We’re going out, you know, taking my baby outside. The first time she’d ever breathed air. So she was well enough that I could take her out and it just felt like, when we got that chance to go out, it was like, this is it. We’re going home soon and I, but I tell you that date they said we could take her home, oh, just so incredible when you hear that, you know. It’s fearful. It brings out new fear but that, yes, it’s your chance. You’ve, you know, she’s done it. You know, you feel so proud of your child that you know you’ve done it. You’ve done it.

* 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.
Parents are often encouraged to come and sleep over, “room in”, with the baby for a couple of nights in hospital to give them extra confidence. As Zoe said, “It’s horrible, like it’s nothing can prepare you for that…..it was a daunting experience”. But it was all part of setting up routines for being at home, such as bath and bed times. Joanne described how part of the process for her and her baby was gradually reducing the tube feeding and replacing it with more breastfeeding, “They call it normalisation in those last few weeks”. Pamela said, “So just getting to be like a normal baby, so instead of sleeping on their front all the time….they sleep on their back, drinking independently”. Claire found it useful to talk online to other families about their experience of going home with a baby with a tracheostomy*. As well as sleeping over at the hospital, she and her partner were also able to bring the baby home for the odd night to test how well it went. Joanne found that after weeks in hospital, it all felt quite quick. “I think we only maybe got a weeks’ notice that we were leaving, when we were actually leaving, you know, it sort of all happened very suddenly at the end as well.”

Training, and managing the technology

While their baby needed to be well enough to go home, it was often the parents who were being prepared and trained in the last few days. Doctors needed to be confident they would be able to cope with their baby at home. “It was mainly us, wasn’t it, what we had to do”. Mary said this wasn’t so much about testing whether parents had the skills, but rather making sure they themselves felt confident enough to say, ‘yes, I can do it now’. Many hospitals had a set protocol that involved training parents in the various techniques they might need at home, and giving them the confidence to look after their baby on their own.

Mary felt she was being trained to take her son home. She was grateful of the expert input, but also desperate to be able to be home.

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Age at interview: 42
Age at diagnosis: 41
I think there’s quite a refined protocol for preparing parents to come home so we done, we did some rooming in the nurses were very good as to helping me and giving me tips so by this time, stage [son] was on formula so you, obviously there’s one thing you know how to make up but there was also kind of them telling me, telling me how to manage that day to day like getting the bottles ready, making it most efficient and so, and I probably knew, I probably took advantage of them as well, you know, when you’re discharged from hospital you just kind of, there’s two sides to that relationship. So you have all these very expert neo-natal nurses all who have slightly different styles of doing things as well and slightly different ways of swaddling the baby and holding the bottle and everything. So on one hand, you know, as a mum you kind of feel a little bit kind of intimidated and frustrated that you’re being told to do one thing one way and then another way and then just, just why am I being corrected and I wouldn’t have this if I was at home and all that. But then you kind of look on the other side and say wow I’ve just got all these experts who I can just plug for information and tips and everything so I think probably in the last two weeks especially when we were in the last room, the special care room you’re very much being trained for going home with your baby. So we, I think we were very much onto knowing exactly what we were going to do, I knew [son]’s routine I knew that it was best if we brought him home in a taxi at 5 ‘0’ clock in the evening because then I can give him a bottle and then he tended to go down around 8.00 and everything I think had been planned in my own mind. And we’d had time to get everything ready at home, get the bed ready get everything made up and almost like having his pyjamas ready before he left the hospital. 

So he needed to be putting on weight and I guess also ready to be able to manage him with his, with the stoma at home as well. And that’s quite an interesting one because putting on weight is quite easy to define it’s, you know, daily weighing and him tolerating the milk and him, kind of him, you know, quite obviously putting on weight. I think parents think ready to manage the stoma at home is a slightly different thing because that’s not something they can probably tell you either with a test but I kind of understood that that, well he couldn’t come home really unless we could manage him at home. So and there isn’t any definition of when you’re ready or when you can manage something because it’s not just being able to physically do something it’s also having the confidence in yourself to be able to do it as well and to be happy doing it. And also they’re keen that both parents can do it as well which is harder say for my husband to get as much practice in doing it because he’s only able to nip into the hospital, you know, after the first couple of weeks he was only able to nip into the hospital after work.


But, you know, it’s really important that both parents can manage, can empty a stoma bag can deal with the situation when a stoma bag falls off. I think probably, you know, just observation and also looking at my enthusiasm for managing it and dealing with the task. I would say I think it’s fair to say though it’s probably not a test because probably a test is on myself as well of these kind of almost saying to them yes I can do it now I’m happy doing it rather than them, you know, scoring me in the background. I’m sure there’s a degree of that and that’s necessary for the safe guarding of the child but I think, I think a lot of it is also me getting to a point where I was saying to them yes look I am happy about doing this why can’t you know, I should be able to do this at home.

And do they prepare you by having you in and stay for a few nights, is that right?

That’s right yes so we did the rooming in I found, I actually found the rooming in quite hard because I found just living in the hospital 24 hours very claustrophobic. Because I’m someone who likes, just needs to get out, get fresh air so I found that quite artificial. But I can understand why it works for some people, to be honest for me I found the whole experience quite, quite frustrating to be honest so I didn’t really feel I benefitted that much from it.
Depending on the ongoing needs of their baby, parents had different training in addition to first aid and resuscitation. Claire was trained in looking after her son’s tracheostomy and NG tube*, Mary was trained to look after her son’s stoma*, Fiona and Mike had to get used to managing their daughter’s oxygen tank.

Michelle already had two sons at home, but it was daunting to bring her son home after his gastroschisis operation. The hospital encouraged her to take responsibility and prepare for home.

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Michelle: Actually the transition to home we kind of gloss over was they were fantastic they have a couple of rooms that you can room in with your baby before you go home because actually it is really daunting despite having two other children we’ve never, we’d never spent a night with him were he’s not in a box being supported by 24/7 nurses so.

Harry: That’s exactly it, you kind of get used to having that, I mean, the biggest safety blanket you can possibly imagine everywhere. So you’re there you’re doing the kind of tying up the nappies and kind of pressing a button to turn the alarm off if someone tells you to but actually you don’t have any responsibility.

Michelle: You’re told when to feed and you’re, if you have a question about why someone’s crying they’re immediately there to help you so, you know, you don’t you learn not to think for yourself because all you are doing is supporting them rather than you having sole care of your child so you don’t actually feel, you’re infantilised you don’t feel equipped to deal with that. So actually it was really helpful to have that night where they’re just outside the door and you can, it’s quite odd isn’t it to think, you know, they transfer them to a separate little crib that you can kind of wheel into a room, feels quite strange when you’re first in charge of them doesn’t it, quite scary.

Harry: And then you.

Michelle: Quite scary.

Harry: Yeah you just take him home.

Michelle: And then you take him home [laughs]. 

Must be terrifying [laugh].

Michelle: So it I, you know, it is quite scary but actually they, they very much encourage you as you go through, once you get out of ITU and you get into high dependency and certainly in SCBU they, you’re totally encouraged to do as much care for your baby as you can, it’s your baby they’re there to support you and to medically jump in if need be but don’t expect that they’re there to feed and care for your baby because that’s your job. So, you know, they were very good and clear about that which was really helpful actually because it gives you the confidence to start taking over and to start trying to build, I mean I felt like I was kind of bonding with him when he was in there but you can only do it to a certain extent because they’re attached to lots of wires and you need help to come and take them out and put them back in and you never have skin to skin contact with them because there’s too much going on. So actually you can only do that once you get home, I’d never breastfed him until he came home so and by that stage he was two months old so it, you do have a big gap and it feels like everything is on hold until that point at which you bring him home. And it’s kind of a, you have a new born baby that is actually two months old so it’s quite an odd psychological thing to get your head around where you’re dealing with someone who developmentally is older than their years if you see what I mean, you know. So you’re starting from slightly differ point, you kind of hit pause for a couple of months.
Breathing was an issue that several parents talked about as something they hadn’t anticipated or been warned about. Amy said, “Also her breathing and, actually, I had prepared myself so much for the exomphalos* that I hadn’t, hadn’t thought about other issues. So the breathing, you know, it was, you know, there was a chance there’d be other problems but I didn’t realise how much the breathing would be an issue.” Some babies had to come home on oxygen and have their oxygen levels closely monitored, which was very stressful for parents. Fiona and Mike came home without a monitor to measure their daughter’s oxygen levels and it took a while for the local healthcare trust to agree to provide one. As her oxygen levels fluctuated a great deal, they couldn’t have her home successfully without it, “you’d be calling the ambulance all the time.”

Care package

Some babies needed a care package and equipment to be in place before they could go home, although the care required varied. Julie’s son needed carers to come in every evening which took months to negotiate, and Fiona and Mike had to arrange for an oxygen saturation monitor at home for when their daughter left hospital (see above). Some parents found persuading their local NHS that they were skilled enough to use this and to fund the equipment was not easy. Claire needed the community team to be notified about her son’s tracheostomy so they could visit regularly. 

For many parents, going home was “really tough” and daunting. But worth it. People described feeling proud, relieved and excited to get this far. Amy said it felt a bit flat walking out of the hospital and “you almost wanted this ceremony” to mark it as a watershed moment. Louise found it overwhelming and found herself crying.

Rebekah was thrilled to have her daughter home after three months, but struck by how weird it was bringing home a three month old baby, not a newborn. 

“But then I found the strangest is that, is that she was a three month old baby, she came home and she was three months old, it felt like I had a new born because she hadn’t been home. So she’d be doing things that a three month old baby does like smiling or cooing and I was like what are you doing like this is really bizarre because I felt, it felt like she had just been born.” Rebekah

*Footnote definitions: 

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. 

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.

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

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.

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.

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.

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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