Ally
Age at interview: 37
Age at diagnosis: 37
Brief Outline: Ally’s second son was diagnosed with gastroschisis* when she was 12 weeks pregnant. He had surgery when he was 6 days old, and is now thriving.
Background: Ally is a probation officer. She is married with two sons.
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Ally was pregnant with her second son. The 12 week scan picked up the possibility that he might have gastroschisis*, but she and her husband had to wait for another few weeks for a second scan to confirm the diagnosis. They were allocated a specialist midwife, and referred to a larger hospital with a paediatric surgical team in their closest city. Ally was scanned regularly for the rest of her pregnancy, to monitor the baby. Her new surgical and medical team at the second hospital spoke to her about what to expect once her son was born, and she was given a tour of the neonatal intensive care unit (NICU)*. She was advised she could give birth naturally, but doctors wanted to induce her three weeks early, as there was a higher risk of her son being stillborn.
Her son was born naturally and was taken straight to NICU to settle him in. The surgeon assessed him, and put his exposed bowel into a silo*, from where gravity would help it fall back into his abdomen. Ally soon found a routine of visiting her son several times a day, doing what care she was able to, even though he was in an incubator. He was stable and went in to have his surgery to close up his abdomen on day 6. But the night after his surgery he was very unwell, and Ally and her husband were told he was in a critical condition. However, after a worrying few hours, his condition soon improved. He was moved out of NICU when he was 2 ½ weeks old.
The hospital was over half an hour’s drive away from home. Ally was able to get a room in Ronald McDonald accommodation (for parents) in the hospital, where she stayed for the 4 ½ weeks that her son was in hospital. Her toddler was able to visit as well, with Ally’s mum who was looking after him.
By 4 weeks Ally’s son was eating and digesting his food well enough to be allowed home. Unfortunately his wound developed an infection, and several weeks later he had to go back into hospital, and have a second surgery. He was 7 ½ months old at the time of the interview and doing well, although still going back to the hospital for regular checks.
*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.
*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.
Her son was born naturally and was taken straight to NICU to settle him in. The surgeon assessed him, and put his exposed bowel into a silo*, from where gravity would help it fall back into his abdomen. Ally soon found a routine of visiting her son several times a day, doing what care she was able to, even though he was in an incubator. He was stable and went in to have his surgery to close up his abdomen on day 6. But the night after his surgery he was very unwell, and Ally and her husband were told he was in a critical condition. However, after a worrying few hours, his condition soon improved. He was moved out of NICU when he was 2 ½ weeks old.
The hospital was over half an hour’s drive away from home. Ally was able to get a room in Ronald McDonald accommodation (for parents) in the hospital, where she stayed for the 4 ½ weeks that her son was in hospital. Her toddler was able to visit as well, with Ally’s mum who was looking after him.
By 4 weeks Ally’s son was eating and digesting his food well enough to be allowed home. Unfortunately his wound developed an infection, and several weeks later he had to go back into hospital, and have a second surgery. He was 7 ½ months old at the time of the interview and doing well, although still going back to the hospital for regular checks.
*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.
*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.
Ally did find it a worry planning when to have her mother come to look after her toddler, and if she would get into any hospital accommodation once her baby was born.
Ally did find it a worry planning when to have her mother come to look after her toddler, and if she would get into any hospital accommodation once her baby was born.
Ally went to see her son in the NICU in the early hours of the morning. His condition was worse than the scans had suggested.
Ally went to see her son in the NICU in the early hours of the morning. His condition was worse than the scans had suggested.
1 ‘o’ clock in the morning you went to see him?
Yeah.
Wow, okay.
And it made him all comfortable in his little incubator and at that point he hadn’t had his silo* put on but the surgeon had looked at his bowel, there was a lot out there’s more out than you’re expecting. What I found with the scan, sorry I’m jumping back, but with the scans whilst they were looking for I suppose dilation and serious sort of anomalies where they might have to act and do we need to do something with the baby if they need to come early. And talking to [name] who was doing the scans he was basically saying ‘Look I can see what I can see, but until he comes out I might think something’s dilated but actually when babies born it’s quite healthy or might be the other way round.’ So again while we were having these scans we are very much aware that until he comes out we don’t really know exactly what we’re dealing with. And like she said there was more out than we’d anticipated, I’m not sure if it was more than the surgeons had anticipated but I think his stomach was out as well I seem to remember them saying that we were just expecting it to be bowel.
* 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.
Ally tried to get into a routine that made sure she got some rest so that she could look after her son as best she could and find a bit of normality.
Ally tried to get into a routine that made sure she got some rest so that she could look after her son as best she could and find a bit of normality.
And so the sort of routine was, did you go in the morning or did you just tend to go in the afternoon?
I’d go in the morning before ward rounds so that varied depending on how he’d been the night before, if it had been a bad night if there had been something not quite right I’d get up about 6:00 and I’d go across and just sit with him and obviously leave for ward rounds and then we’d go back after that then go and have a bit of lunch and then go back mid-afternoon and then tea time. So I’d say across the day we’re there about four or five times but maybe a couple of hours stints at a time but
But [husband] was with you pretty much the whole time?
Yeah.
Yeah.
Yeah, yeah yeah I think there was only two nights that he, maybe three that he came home and stayed over here.
Okay.
But yeah we were pretty much over at Ronald McDonald together. We just, I don’t know you just like I don’t know if like because we just put it into little sections or right we’re here move onto the next bit and then onto the next and were moving to going home and I don’t know you just, you just manage. And maybe about, maybe a big part of it is maybe as someone said to the other parents try and keep that normality of doing things for you, go and have a bit of lunch together or go and have a walk in the park, go and have just a bit of time out because you need it otherwise it does get tough. And it’s quite hard as well, something I did find hard was because it’s a children’s hospital you’re obviously dealing with your own whatever illness your own child has got but as you walk through the hospital you see other poorly children and that’s heart-breaking like children with cancer and you’re in a delicate sort of place yourself and it’s just so emotive I suppose.
Yeah.
Or seeing other parents with their children. We didn’t really talk much to other parents on the unit and I think that was just - I don’t know if it was part of our preference of not wanting to intrude or be nosey or, I’m not sure if other parents maybe talked to each other more and said ‘What’s your child in for’ I just never wanted to do that as I don’t think it’s fair to put somebody in that position. But you see parents at Ronald McDonald and have little chats about what their experiences were. I mean some of them are there months and you think gosh at least we, I always think we knew what was coming for us, some parents their baby’s born and they have no idea and that must be really tough. We could, we could plan, we could we’d get our awareness and we were prepared really as best we could, sorry as best we could be.
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.
* 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.
Ally said the Ronald Macdonald house where she and her husband stayed for 4 ½ weeks was “amazing”.
Ally said the Ronald Macdonald house where she and her husband stayed for 4 ½ weeks was “amazing”.
Oh it’s amazing it’s basically like a hotel it’s free and you have a room which is like a Travel Lodge room, probably better and you can sleep up to four people in that room. They have kitchen facilities, lounges, play rooms for siblings, they provided all sorts of things you wouldn’t think of, obviously we were only there for four and a half weeks some parents are there, some of them were there for months They have hairdressers come in you can get alternative therapies stuff that just to give parents a break, they were thinking of all sorts of things and I think as well we probably didn’t use them to their full potential like I say we’re very much, we sort of just got on with it but I’m sure if you needed, wanted to talk to them or anything like that they would have sat and listened or got somebody for you to talk to. I think they could get help with the community to sort out paperwork or things like that an amazing charity, in fact two of my friends did a run this year the Great Run, no, Glasgow half marathon and raised money for them just because, I raved on about them that much they did that so fantastic if we hadn’t had that it would have been a lot more stressful, a lot more stressful.
Yeah and so you just basically moved in there for, what that ended up being for, four and a half weeks?
Just over four and a half weeks yeah I didn’t, we both moved in and initially we were both there and [husband] would come home every three or four days and see [older son] and then either bring him back or bring my mum and [older son] back so that they could come and see [son] but I just, I just stayed there I didn’t want to go far away.
Yeah.
And the beauty of the Ronald McDonald house in [city] is it literally is you walk out of their front door and the entrance to the children’s hospital is over the road, you are minutes away if ever you needed to be called. So you’re able to go first thing on the morning, you don’t put anything out like if I had to travel I don’t, I can’t imagine, that would have been awful.
Ally’s son was poorly after his surgery. It was a horrible night as she and her husband sat with him until he started to improve.
Ally’s son was poorly after his surgery. It was a horrible night as she and her husband sat with him until he started to improve.
And that night that’s probably the worst night that night they re-intubated him I don’t know what time about 10 ‘o’ clock and I don’t know whether by doing that or whether it was just a consequence but his lung then collapsed and his breathing and his sort of stats and his blood levels were all to pot so he was, he was poorly but he then seemed to steady off. So I went back to Ronald McDonald to get some sleep and then [husband] came to get me it must have been an hour later and said, ‘Oh they said he’s critical,’ that was awful, just awful. But so I went back over not knowing what to expect and they were doing the blood gases which is where they basically take a sample from his toe and they’re just checking what his oxygen levels are in his blood. And I think they were doing that every half an hour and the one that came back started to show an improvement and then he picked up from that point but it, it just amazed me how, how quickly it could turn one way or another with babies they’re just so delicate but yet so resilient. You think they’re doing okay and then he just went down and then very quickly came back up and that’s what they do when they’re monitoring and putting the right drugs in to manage all those all those statistics come out, those blood tests. But yeah that was a horrible night.
Did you stay with him all night that night?
Pretty much I think in a space of two or three hours, but then it’s quite quick how they rectify themselves so that reassurance is right, and the nurses are very good they will ring you if, for anything if you want them to. So yeah I think I stayed most of that night and then went and got some sleep the very early hours of the morning but then by the next day he’d picked up again and was steady. And I think it was about three days after that they started giving him food because before that he’d not been able to have anything.
Ally’s son went back into hospital for a second operation and had an infection, but by the age of 7 ½ months he was discharged.
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Ally’s son went back into hospital for a second operation and had an infection, but by the age of 7 ½ months he was discharged.
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Oh yeah, strange in a little bit ohhh and of course we had this V.A.C. machine that sounded like a train chugging away as it, as it did the suction but no it was brilliant coming home.
So that suction was for his lungs or for his wound?
The wound yeah he came with this little machine in a man bag that we had to take with us with a tube attached and he ended up on I think three weeks until he then started, I’m jumping the gun here to this next phase but he started reacting to all the dressings that were on his skin went awful he smelt awful because his skin was irritated by all the adhesive. And then, it was working in closing this little hole that was there but Mr [name] had a look one time and he could actually see that the membrane had deteriorated underneath which it shouldn’t have done it did it earlier than anticipated it should have lasted about six months. And it lasted a lot longer probably about two and half well less than that, it started and, at that point I can’t put the V.A.C. dressing on cos that was a suction it could damage his bowel. So we had a week of seeing what that wound would do on its own but it, it just, it maybe got slightly bigger the hole so he said right let’s bring him back in and close him up.
Okay.
In hindsight, that was probably not a bad thing because he actually took out all of that membrane so he’s got no foreign body in him now and he managed to stitch his stomach muscles together which he hadn’t been able to do the first time cos of that little gap. So he closed him up and that was really quite successful until two days later when we got home, I think it was on the third day and it became infected and then I actually took him to [city] Hospital then and we were in there for a week because it, he just needed intravenous medication, basically his stomach became so sore and it burst and all that [blegh] that came out.
So that was the second surgery that you went back in for?
Yeah the second surgery in [city] I think that was end of June so he’d been about three weeks of this if the V.A.C. dressing if not longer but it became quite that was probably the most stressful period in a way because I wasn’t sure if when it became angry and the dressing started slipping off a bit and things, whether that was infection or what was going wrong. So one week we were at [city] five times because there was no point me taking him to [city] because they couldn’t deal with the vac dressing they would have just sent me to [city], we did have a link at [city] we had open access to their children’s units as part of our discharge from [city] but I think I rang them once and they were just sort of like ‘Oh no send him send him to [city]’, so we just said we’ll just go there and present to A&E and then and if Mr [name] was on he would come and see him. Or if one of his team they would see him or I’d be going to a scheduled appointments to get the dressing changed. But it was just I, because I didn’t have the knowledge and nobody else who came, we had neo-natal nurses coming out as well from [city], they were lovely and they even came out extra when it was getting red and angry and I just said, ‘Look will you come and have a look at it.’ But again they would, they would err on caution and say can you get to [city]. But luckily I mean I feel like I pestered the life out of the surgeon, I would send pictures to his secretary of his tummy and then she would pass it on and then Mr [name] would come back and say ‘It’s just irritated don’t worry it will be alright I’ll see you at his scheduled appointment.’ So that was really good in that I didn’t have to go all the way to [city] for no reason and waste his time as well, so that was really useful.
Ally had to try and plan care for her toddler as best she could. She didn’t know how long she and her new baby would need to be in hospital.
Ally had to try and plan care for her toddler as best she could. She didn’t know how long she and her new baby would need to be in hospital.
And did you at that point have any idea how long it was likely to be, was it was anything between a couple of days and six months or had they given you a sort of ballpark?
No that’s the one thing they won’t commit to, and I don’t blame them for that because I think it is so unique to each child how long they’re gonna be there and what their outcome is gonna be that I think you would, you’d latch on to ‘You said it I was only gonna be here two weeks and I’m here three months later’. And they were quite open and said we can’t give you that information, I think even, and I think the message we sort of got about the nurses and the surgeons and the doctors experience with gastroschisis* is that it’s very up and down, you think you’re doing okay and you’re hitting a bad point and you might feel like you’re going backwards again and then you’ll go a bit further and that, that is true we experienced that luckily in a very short space of time and I’m sure it goes on for a lot, it can go on for a lot longer. But yeah no commitment to dates and we accepted that. I think in our minds we talked by about a month we would know what direction we were heading in and then be able to gauge a bit better cos it’s like things you’ve gotta think about like [husband] has to go back to work at some point. So yeah I think we’d set ourselves four weeks we might have an idea but certainly they couldn’t commit to anything and that’s fine but we sort of knew that was the case. You try if you can get the information but they can’t, they couldn’t commit to that.
* 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.