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.

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.

Yeah because our family aren’t over here in the North West we had to plan for that, so that my mum could come over and plan with her to come over and basically just have [older son] she was originally going to be down for three weeks and then we’d see where we were at. I suppose the uncertainty was we knew there was a Ronald McDonald House we didn’t know if you could get it and you can’t pre-book it obviously you can only get a place once you, you’re in the unit and the nurses do a referral for you. So that did play on my mind what would we do if we couldn’t get anywhere that I suppose was my biggest worry. So towards the end obviously I knew I was going to get a date for my induction but I wanted that date so my mum could know when she needs to come down and just, and just plan from that day and have a few people on standby and things. Yeah it was just, as if we were going to get accommodation in [city].

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.

Yeah that was about 1 ‘o’ clock (am) like I said it took a while for these pain to subside with me and by the time it got sorted across the maternity ward because it was about 1:00. And so we explained look he’s [husband] gonna have to go all the way back here to [home town] to come back again and they were really good there kind of was like a single room on the maternity ward and [husband] was able to stay in there one night so that, that was really helpful and obviously the next day we got Ronald McDonald. And then we went to see [son] at 1 ‘o’ clock on NICU and the surgeon was actually there then and that was the surgeon.

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.

And then basically we fell into the routine after that of day one just spending afternoons over there and again we were quite pragmatic and realistic that by sitting by his bedside, I don’t know if this might sound, I don’t know we didn’t stay like all afternoon all the time because I just don’t think that was doing anybody any good so we’d have little visits and then go and have a look around the local area, never far because once we went, when he was about three weeks and we went to a shop in [city] and I said ‘No this is far too far how would I get back, how would I get back’. but yeah go and have a bit of lunch or there was a park quite close by there was quite a lot going on in the area of [city] Hospital so I was quite happy to just go and get some downtime really or that luxury of having Ronald McDonald house you could go back and just have a sleep or just put the telly on and just try and I suppose relax really and make sure you’re alright for looking after [son].

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.

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.

Ally said the Ronald Macdonald house where she and her husband stayed for 4 ½ weeks was “amazing”.

And what’s the Ronald McDonald house like?

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.

That first night after surgery he was quite, he was quite poorly. He in terms of the surgery it went well in that they did get his bowel back in but it was a tight squeeze cos he had such a lot out, so what they had to do was put a patch in to hold the bowel in it was like a membrane that would degrade over a period of time and then they basically seal the stomach together over the top of that, and you have a little drain in. And so that’s how things had gone well although Mr [name] did say it was tight he might pop open it’s something we’ve got to be aware of because it was such a tight squeeze. So he came back from surgery and he came back off the intubator, I think they’d had a struggle getting him off and the anaesthetist came to see us, she came to see us before actually and talked us through everything so that was reassuring she explained what she would do and it’s quite reassuring as well, I don’t know if it’s because they’re so little it’s all consultant lead or it is at [city] for the babies so again it’s that reassurance and I know you probably shouldn’t, but you think ‘oh I’m getting the consultant looking after my baby’, just that extra level of assurance. So she explained what she would do before and afterwards she came up to see us and she said it was a bit of a struggle to get him off the intubation he might need to go back on it later and then across the day he got, he found it harder and harder to breath I think combined with everything going back in it squashed up his lungs a bit obviously everything had had loads of space and then it all gets squashed in. 

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.

It must be brilliant bringing him home.

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.

Yeah because our family aren’t over here in the North West we had to plan for that, so that my mum could come over and plan with her to come over and basically just have [older son] she was originally going to be down for three weeks and then we’d see where we were at. I suppose the uncertainty was we knew there was a Ronald McDonald House we didn’t know if you could get it and you can’t pre-book it obviously you can only get a place once you, you’re in the unit and the nurses do a referral for you. So that did play on my mind what would we do if we couldn’t get anywhere that I suppose was my biggest worry. So towards the end obviously I knew I was going to get a date for my induction but I wanted that date so my mum could know when she needs to come down and just, and just plan from that day and have a few people on standby and things. Yeah it was just, as if we were going to get accommodation in [city].

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.

Ally described how her mum cared for her older son, but therefore missed out on seeing her younger son when he was ill in hospital.

I think on the likes of, like my mum who had [older son] which she, she loved but I think as well she would have liked to have seen [son] more often and when she did see him she had to come and see him in hospital and I think she found that hard. And I think she, its hard work looking after a toddler as well day in and day out and he was in nursery so there was a bit of respite but I think it was hard for her as well in terms of just, the energy and the sort of yeah having to look after a, a toddler day in and day out. Things like she would get the train to [city] and that’s not something that she would normally do so, probably putting her out of her comfort zone but she just had to get on with it because she didn’t want to stress us out thinking well how, ‘I can’t expect them to come and get me’ and things like that so I think for my mum it had an impact. And I think my dad obviously they’re over in [city], they came over and did have [older son] a few days for us as well but I think because they’re so far away they just want to be able to do more but can’t. I suppose they worried about me as well am I alright and [husband]’s parents and, well his dad and his sister they again it’s that distance for them to be here to help and just that worry for everybody really wanting to know and they getting our feedback and obviously sometimes us saying ‘Oh it’s been a really bad day,’ touch wood there wasn’t many of those but when there was, be worrying waiting for the next bit of information on how he’s doing.