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Parents’ experiences of neonatal surgery

Early treatments and interventions when a baby needs neonatal surgery

Parents we talked to had often been told about various treatment options, and done their own research, during pregnancy. But it wasn’t until their baby was born that surgeons could assess the anomaly and work out the next steps. Jane’s daughter had exomphalos*. “We’d basically been told that we don’t know what is going to happen when she emerges. We’ll assess her and then she will go to intensive care.” This meant that the early hours and days of treatment were often critical times for their baby, and very stressful for parents. Alison and Martin’s son was operated on immediately for his exomphalos and they were told “everything had gone as well as they had hoped”. But for some parents the first few hours and days were very rocky. Claire’s son also had exomphalos and he was rushed to neonatal intensive care (NICU)* as his condition deteriorated overnight.
 

Claire found the early visit to her son very difficult and upsetting.

Claire found the early visit to her son very difficult and upsetting.

Age at interview: 34
Age at diagnosis: 33
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Yes, he was there for two days and I was, obviously, desperate to see him. And the women’s hospital very kindly arranged for me to go and visit him on the surgical ward. So I went and spent about an hour with him, which was very difficult because I was very upset and I felt like I didn’t want anybody else introducing me to my own child. And that they knew him and they’d seen him and spent time with him and I hadn’t and that was really difficult. I was angry and upset the whole time I was there. It wasn’t, it wasn’t a good experience. And then the, that night, unbeknownst to my husband or I, [son] went into respiratory distress and the following morning [husband] went to the hospital, went to [son]’s bed space, as it had been, and there was no baby there. And went to the reception, and kind of said, you know, “Where is he?” And they said, “Oh, it’s okay. We’ve rung your wife and he’s going to intensive care.” And it turned out they hadn’t actually called me. They called to our home number and spoken to my parents, who were looking after our older son, so I didn’t know, [husband] didn’t know. And so he was down in intensive care. [Husband] was able to give me very brief bits of information but, at that time, they were trying to see if they could not intubate him. They tried to hold off. But he was just very unwell and so they had to put him on the ventilator at that time.
When investigations discover other problems

In addition to starting early treatment, and getting them stablised in special care units (NICU) or pediatric surgical wards, this was a time when other complications came to light for some babies. Claire’s son had been diagnosed with exomphalos during pregnancy, but in the first few days doctors also discovered that he had a floppy airway (laryngomalacia*) and would need a tracheostomy*. He also had a hearing test which found he was deaf.
 

Joe’s daughter had exomphalos. Early scans after she was born showed she had a rare heart condition as well that hadn’t been picked up in pregnancy. They were taken to the “bad news room”.

Joe’s daughter had exomphalos. Early scans after she was born showed she had a rare heart condition as well that hadn’t been picked up in pregnancy. They were taken to the “bad news room”.

Age at interview: 36
Age at diagnosis: 34
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[Name] was in special care and I was on the ward, being taken up there to see her and then she had a routine heart echo because a lot of babies have heart conditions that have exomphalos* but we weren’t prepared for any news at all because we were told antenatally her heart was fine. Turns out [Name] had one of the rarest heart conditions a baby can have, she had something called an aorta pulmonary window so that’s a communication between your aorta and your pulmonary artery which are the blood vessels that go into your heart and there was a big hole in between them so it meant that [Name] wasn’t gonna survive unless she had heart surgery, pretty major heart surgery on a baby that they hadn’t seen at the [Name] hospital for thirty years with one. So to be given that diagnosis when [Name] was five days old was horrendous, we were told that she might not survive, we were told that this little baby that we had who had, who we weren’t sure was gonna survive the birth in the first place and we’d had looking so healthy as healthy as an exomphalos baby can look it was crushing, really crushing news to know that [Name] not only had to overcome all of the problems with exomphalos but then had a heart that didn’t work properly and was really seriously damaged was horrendous news, absolutely horrendous. And they sit you down and they say, we went somewhere and we call it the bad news room because we could see all these other parents go into this and it was, they always call it the quiet room, and all these parents went in with the doctors and came out absolute messes and you could see it happening to all these other parents and thinking ‘Oh God I hope I’m never the parent that has to go in there’ and then we became the parents [tears up] that had to go into the bad news room. and when they tell you that your, that your baby isn’t gonna survive unless they have open heart surgery it’s the scariest thing in the world because I haven’t, you don’t know, anything about it, you don’t, you can’t prepare yourself for it, you can’t, if you’re not medical and you don’t understand a lot of it. And they said yeah “[Name] will just get worse and it sounds awful but we’re gonna wait for her to get worse before she has any surgery because we need her to grow as bit she’s too little to have surgery on.”

* 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. 
 

Sally-Anne recalled the rollercoaster of the first day. She was elated to be discharged and able to see her son, and quickly devastated when his condition rapidly worsened.

Sally-Anne recalled the rollercoaster of the first day. She was elated to be discharged and able to see her son, and quickly devastated when his condition rapidly worsened.

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Well on the Sunday I’d just obviously just been discharged, well got out, got to the hospital didn’t I, we took the suitcase into the room and went straight into [son]. And [son]’s stomach was virtually flat and I was like ‘Oh my word they’ve done it, they’ve done,’ cos he was compression bandaged, I was like ‘They've done it they’ve managed to get everything back in’. I didn’t really know a great deal at this point about his SATS and his oxygen levels and things like that because I'd only spent, you know, a couple of hours with him really. And this machine’s just bleeping away and bleeping away and bleeping away and I just, you know, I just thought it was just one of them things because I was naïve to the fact that I didn’t understand what was going on. And we decided to go and get something to eat didn’t we and in fact we’d got one of the, one of [son]’s nurses and ‘like go on you need to get yourself something to eat now,’ so we went and got something to eat. Within that time span everything must have gone on upstairs because when we went back up was we wasn’t allowed back in the room to see [son] and we was told that his consultant was working with him and I was like ‘Well what’s going on, what’s, you know, what’s happening?’ the compression bandage had, you know, they’d actually put the compression bandage on too tight and his little body just couldn’t take it, it just couldn’t take it at all. See so everything that was originally been put back in had to come back out again and they did this on the ward, they undone the compression bandage and just released all the pressure and, and it was, it was very, it was touch and go wasn’t it, I mean they’d got the resuscitation packs in his room ready. And he'd gone back onto the, he ended up back in the oxygen tent didn’t he and things like that I’ve never, I've never witnessed that before I’d never seen, you know, I’m just looking, you know his head in this box and it was, it was quite a rollercoaster ride that day was because I, you know, I felt between elation and being able to come out of hospital and being with [son] and then when I got there he had this severe relapse and we just didn’t know where, what was happening.
Early treatments

For babies who had congenital bowel conditions (exomphalos and gastroschisis*) the focus was on getting the organs that were outside the body (bowel, liver, stomach) back inside. There were different approaches taken depending on the severity and nature of the condition and the decisions of the surgical team. Alison and Martin’s son had exomphalos and had surgery the first night, but many babies had other more conservative treatments first to try and protect the bowel and push some of it back inside before the hole in the tummy wall could be closed. A common treatment was a silo*.
 

Harry and Michelle recalled seeing their son (with gastroschisis) set up in intensive care with a silo above his stomach.

Harry and Michelle recalled seeing their son (with gastroschisis) set up in intensive care with a silo above his stomach.

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Harry: The ITU room, so there’s ten incubators in that room he was in it’s quite a stressful room there’s lots of things going on, there’s lots of very ill babies who are constantly having problems and there’s alarms going off the whole time, either rightly or wrongly so there’s a constant hum of machine noise and, you know, sometimes stressed parents and stressed medical staff as well so it’s quite a, it’s quite an intense place to be. So moving on he was on his back intestines in a bag hanging from the top of the incubator. So what they do is they, they want to try and do the closure as quickly as possible because the longer it’s outside the more risk there is of infection. So they encourage it, so obviously gravity works, the swelling reduces naturally and the bowel descends into the abdomen to a certain extent but they also on the, imagine the bag above his abdomen they put little ties on so you can see how far every day, you can see it’s like a reverse growth chart seeing how the abdomen is descending and then they make a call about feeling the pressure on, pressure on the abdomen.

Michelle: Because the abdomen hasn’t grown big enough to accept the bowel basically so.

Harry: Yeah I mean its physics really.

Michelle: It puts a lot of pressure on the other organs.

Harry: There isn’t enough space. So yeah it exerts a lot of pressure. As Michelle says once it’s in it’s going to put pressure on the liver, the lungs all the other, all the other major organs in the abdomen so you have to be sure that there’s not, A there’s enough space to shove it in and sew it up.
 

Amy’s daughter had an exomphalos and had had a silo stitched on when she first saw her in intensive care.

Amy’s daughter had an exomphalos and had had a silo stitched on when she first saw her in intensive care.

Age at interview: 39
Age at diagnosis: 33
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So when I came in that first day to see her she had the silo on. So it, it almost seems crude or old fashioned in a way. But really they sew on a mesh bag to the base, so the round base of her, her defect and then, at the top, they sew it together and then your baby is in, in the bed and, very simple again, they use elastic bands, tie them together and that is over the top of the bed so gravity really is starting to push the organs back into the body. So gravity is part of the medical process I guess, of you know, healing your child. So it’s quite a crude isn’t the word, but it’s very simple really, a really simple process of how they do it And seems almost, you know, in this day and age they could have some, you know, new contraption or some fandangled way of doing it but it was really sewing it on, you know. 

And I guess, one of the things for me was always the risk of infection, and it was something I was always really, really worried about, you know. Because it’s so life threatening for these little babies and I, you know, was really worried about infections. And even when she’d had the surgery then, you know, worried, you know, would that have exposed her to infection and so there was always that element of worry and then, obviously, seeing her and knowing afterwards that she wouldn’t be as well as she had when she’d gone in. And I think that’s it, when your child has surgery, you expect, at the other end, it’s going to be very positive and, you know, you’re child is in for surgery, they’re coming out better. And my child would come out, not worse, because it had to be done but she would, her little body would, didn’t cope as well.
Several parents were struck by how “low tech” some of the treatments were for their baby’s condition. At various stages gravity, cling film and manuka honey were used to treat their baby, while at the same time they were connected to high tech machinery and receiving one to one nursing care.
 

Ally’s son had gastroschisis and was given a silo to let gravity take its course before he was ready for surgery.

Ally’s son had gastroschisis and was given a silo to let gravity take its course before he was ready for surgery.

Age at interview: 37
Age at diagnosis: 37
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He was really good he explained to us what, that his bowel looked healthy it was nice and pink there’d been a little growth of skin around an area and he’s had to snip that but he said he had seen that before and then basically he explained that the following day they’ll put everything in a silo*, he might have been going to do that later that night actually whether he, I think if Mr [name] our surgeon it was that surgeon we saw and he followed it right through he then did the main operation as well. I think later on that night he must have put his bowel in the silo because by the time we were there the next morning it was, it’s suspended from the top of the incubator. And again he explained similar to what we’d been told initially when we had the first conversations with the female surgeon on our scan visits, that they would put it in a silo they would squeeze the bag down every couple of days let gravity take its course as well and get to a point where they could hopefully take him in and close up, up the wound. I think he did sort of give us some information about the closure of the wound and the bowel going in and things and the different scenarios but I think that probably didn’t go in very well at that point he, but he gave us lots of information, not too much but just explaining what would, what could be the outcome in the terms of surgery but we then saw him quite regularly up until the point of when he went into the closure.

* Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.
Another treatment technique used was called “paint and wait”*.
 

Hayley and Thomas found the communication with surgeons very stressful when they called up to tell them they were going to use “paint and wait” rather than surgery straight away.

Hayley and Thomas found the communication with surgeons very stressful when they called up to tell them they were going to use “paint and wait” rather than surgery straight away.

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So what had they done with the exomphalos*, was it in a silo* or?

Hayley: So this is the bit where [specialist hospital]’s kind of so they wrapped him in cling film first off and then they put a doughnut round him just to keep it in place, he was on his back wasn’t he. And then because it was the weekend we kind of didn’t have people round to tell us what was happening really and we didn’t have any accommodation so we were actually travelling back and forth for that first four days?

Thomas: Yeah something like that.

Hayley: Which was horrendous. I think that’s why I don’t remember any of it.

Thomas: I think the first, I think the first few days was we still stayed in the Premier Inn.

Hayley: No one day.

Thomas: And then we then we came back, back and forth from here.

Hayley: And again that was horrendous because we had to leave him at a certain time cos of the traffic and, you know, it was just awful I just remember it just being hell. And we arrived here one night literally just walked down the gate and we’d arrived and they said we’re going to feed him now and there isn’t enough milk so we need your permission to put him onto formula and I just didn’t know what was happening and I’d been expressing constantly and I just didn’t know, well why are we feeding him now what’s happening is he not having surgery and the nurse was like ‘Has the surgeon not spoken to you?’ I’m like ‘No’. So she passed me onto the surgeon who was a registrar, he talked as if I knew what he was talking about, he was like he’s not having any surgery and then started talking in medical terms and I remember saying on the phone ‘Are you doing paint and wait*?’ and he said, ‘That’s exactly what we’re doing,’ and I thought, why didn’t you just tell me this because in our minds at the time we thought that was the worst thing in the world.

Thomas: We had to phone back, Hayley had to phone back and clarify it because I think she was in here taking the call and I was in there and then she came back and-

Hayley: And we had loads of questions and what he’d said and…

Thomas: So we phoned back and I think they were able to clarify.

Hayley: Yeah but then again paint and wait but we didn’t really know him because the whole time we were pregnant we were thinking we wanted him to have surgery so that he would stupidly, naively just be better, but that, you know, now we look back and think paint and wait was definitely the right thing to do but at the time you just don’t understand what repercussions that’s going to have to his life and stuff like that and, you know, he really sat us down and explained it to us. It wasn’t until the next day that we went and we saw our surgeon and he took us aside explained it all and we felt much better but that phone call was just the worst thing, I didn’t really know.

*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. 

*Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

*“Paint and wait” technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.
Setbacks

While most babies that have early surgery don’t have any major complications, several parents we spoke to remembered very clearly the setbacks their baby had in the early days and didn’t feel that progress was straightforward. Jane remembers that her daughter had become severely unwell the first night when doctors had tried to push her bowel back in.
 

Jane went down to see her daughter the next morning and discovered there was a problem. She was ventilated for 9 days.

Jane went down to see her daughter the next morning and discovered there was a problem. She was ventilated for 9 days.

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She was in, well, she was actually, she did really well on the day she was born. So, you know, we’d basically been told that we don’t know, you know, what’s going to happen when she emerges, you know. It will, “We’ll assess her and then she will go to intensive care”. But she wasn’t ventilated and I actually breastfed her the day she was born, which was amazing. And then it all got a bit difficult after that but, basically, what happened was I obviously, couldn’t stay the night with her but I was in a private room in, on maternity which was brilliant because, you know, the thought of being next to other mums with babies; feeding babies and crying babies [ugh]. And that’s something I hear from mums all the time, the thought of that is just terrifying. But they put me in a room one my own, it was, I didn’t pay for a private room. They just found me a little corner which was brilliant and. I just, I remember I just, there were, you know, my husband, I went down to see her with my husband and gave her a cuddle and breastfed her and, you know, it was all seemed to be going really well. And then and, you know, I felt ‘well, she’s with, you know, these nurses’. 

And I was just left in the hospital and I think I, I must I think I went down there quite late. But, you know, my husband had taken me down and then I just couldn’t sleep at all and I remember ring-, getting them to ring at three am or something like that and saying, you know, “Is she okay?” And they said, “Oh yes, she’s fine.” And then, basically, my husband came in the next day, not that early, and took me down and she was on ventilation and she’d nearly died during the night. Because the surgeon had decided to try and push everything back in and she went into respiratory distress and nearly died. So that was a bit of a shock [laughs].
Barbara’s daughter had gastroschisis and was put in a silo to slowly squeeze her bowels back inside her. So she knew she was going to be in hospital for weeks. And then “all the unexpected stuff started happening, you know, line insertions, infected lines all of that, and it got really hard.”

But most neonatal surgical operations go straightforwardly and babies who are healthy and well otherwise do very well. Harry and Michelle’s son had gastroschsis. He was taken off to NICU soon after birth. By the time they were able to go and visit him a couple of hours later they were shocked by the wires and monitors around him, but reassured he was stabilised. He had his surgery a few days later. 

*Footnote definitions:

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.

Laryngomalacia
Where the cartilage, the tough flexible material, in the larynx or voice box, is very soft from birth and can collapse and cause an obstruction to the airway.

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. 

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.

Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

“Paint and wait” technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.
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