Shanise

Age at interview: 23

Age at diagnosis: 19

Brief Outline: Shanise was pregnant with her first son when at the 12 week scan she was told he had gastroschisis*. He is now 4 years old.

Background: Shanise is an insurance consultant. She has one son.

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Shanise was pregnant for the first time when she went along for the 12 week scan. The sonographer picked up that her son had gastroschisis*. She was referred from her local hospital to a hospital with a specialist paediatric surgical team. At 20 weeks she met the surgeons who would be looking after her son. They explained to her what would happen and she was shown around the neonatal intensive care unit (NICU)* where her son would be cared for.

She was induced, and gave birth to her son naturally. He was taken immediately to NICU where doctors stabilised him. Shanise wasn’t able to hold him until he was two days old. His first operation took place on the NICU to make the hole in his abdomen larger, so his bowel could go back in. It took a week to ten days to get his bowels back inside his body, and then the focus was on increasing his nutrition. He was allergic to milk so had to have a special formula. When he was 6 weeks old, her son was well enough to come home. It was a couple of days before Christmas, and he was able to meet his family. 

But then problems developed with his bowels again – they were blocked and so he had to go back into hospital. He had a severe infection and had to have another operation to unblock his bowels. This time he was in paediatric intensive care (PICU)* for 6 weeks, and in hospital for 4 months in total. Shanise was able to stay in hospital accommodation, so she could be with him, but it was a long way from home and she was very isolated. When he was 6 months old, he was finally well enough to come home. At the time of the interview he was a bouncy 4 year old boy. He has annual checks but is thriving. 

*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.

*Paediatric Intensive Care Unit (PICU)
PICUs care for children and infants requiring high levels of care, in particular breathing support with a ventilator (breathing machine).

Shanise felt huge relief after meeting the surgeon. She was given the best and worst outcomes, and she understood more about the road that lay ahead.

I saw her, I saw her on, I think I saw her twice and I saw her quite late on about 33 weeks I think it was, 33/34 weeks cos I remember I couldn’t get a scan photo, a nice scan photo, I saw her twice.

Okay and that was, that was the point at which you felt reassured?

Reassured and we had a plan.

Okay.

To focus on.

And can you remember what that plan was?

Basically [son] would be born he, whether so basically, first of all I was asking the question would I give birth naturally because I wanted to give birth naturally I didn’t really want to have a caesarean. And she basically said yeah, absolutely you can give birth naturally however we will have you on a list of for emergency C section just in case as obviously there were quite a lot of complications, obviously I was a first time mum so I didn’t know what I was heading into a labour anyway but obviously because of [son] it was gonna be more complicated. She told me that there would be quite a lot of people in the room, she explained to me who would be in the room so it was like there’s not gonna be any strangers it’s gonna be, there’ll be like obviously a nurse from neo-natal there’ll be she said like a paediatrician, I don’t know how to say that word but, yeah there would be obviously a doctor there’ll be, you know, I think there was about four or five people in total that will be in the room. And then she said obviously there’ll be your midwife there and obviously like your mum or your partner. So I knew who was gonna be in the room cos obviously it’s quite a traumatic stressing time. She also told me as well what would happen she was like ‘Right so you’ll give birth to [son] and you will see him before, they won’t just whisk him away,’ cos obviously that, that just felt, she was like ‘Obviously you won’t be able to cuddle him but like you can see him,’ so obviously that just gave me relief cos you’ve just given birth and the last thing that you want so for them to take the baby straight away you’d just given birth. The and then she explained like, you know, you’ll just get bog standard shop bought cling film and wrap his bowels round it he will then go onto an incubator, transportable incubator she showed me an incubator as well when she took me around the wards we knew exactly what it would look like. And then she said they’ll take him off and what they’ll do is they’ll get his she mentioned two different types of silo* bags that they would use depending on how [son] is with his bowels. 

She gave me the worst outcomes she gave me the best outcome so you just knew that what which one we will be taking so we heard back from neo-natal [unit] saying okay so his bowel’s a little bit larger then we knew that we’d put them in a silo bag or if his hole, his hole is too small they’ll have to cut open his cut open his hole a little more so they can put it into the silo bags cos it wouldn’t attached properly but then his bowels where too big for them to sew back in. She just gave me like different options of what would happen so we knew what we could be facing and what road we’ll be going down. And then obviously things are more serious or not a lot serious they would, we’ll know what path we would be taking basically. Yeah she just basically gave me a huge relief like I knew where I, knew where I was at, it was lovely. And that helped big time people commented saying in terms of how much that really helped us and I think she did that with every parent who knew they was going to be in neo-natal [unit]. And that was a 15/20 minute appointment that helped us for weeks, like it was lovely.

* 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.

Shanise said she couldn’t get excited about buying things for the nursery and hated it if people wanted to touch her bump.

No, didn’t enjoy it like. I think I’m normally the type of person who will block out my feelings for stuff like I won’t really deal with it it’s like I’m in a haze sort of thing. I didn’t enjoy my pregnancy one little bit and I don’t know if that was because of me if I was maternal shall we say or but it was, it was obviously the circumstances. When people came over and wanted to touch my belly I was like get off like, didn’t like that I didn’t like, I didn’t, I wasn’t excited like I didn’t even do [son]’s nursery cos I wasn’t that excited to bring him home cos I knew he hasn’t gonna come home for a while. [Partner]’s mum did the his nursery for me. I didn’t yeah just sort of like everyone talking about baby’s and stuff like that I would be like trying to change the subject like, everyone like, you know, giving me the sympathy or oh it will be alright yeah you’ll be fine sort of thing and I’d just brush it off, didn’t really deal with any emotions really I felt like a robot I felt like the robot throughout my whole pregnancy and throughout the whole hospital.

Shanise felt she held back from loving her son while he was in hospital, she didn’t want to attach herself to him in case something happened.

And then went back the next day and then throughout the whole next couple of weeks I was sat next to the incubator and I felt like there was no point me being there whatsoever. The whole time, the whole six months that [son] was in hospital, this is going to sound like a really awful person, but I didn’t want to love him or attach myself to him in case something happened, it wasn’t until he came home that I felt that like motherly son bond, I think I put it all on hold in fact, emotions or love or affection even for [partner] went like literally I was just like a robot throughout the whole thing. Then he, I just, going back to, the thing is I was sat next to the incubator for like 12/13 hours a day, doing nothing. Like I would see the other mums reading stories to their kids to their baby in the incubator or one mum constantly like every couple of hours changed the teddies, rotated the teddies round the incubator cos that’s all you could do, you couldn’t do anything like you couldn’t feed him cos he wasn’t being fed the only thing I could do every three hours go and pump my breastmilk so they can freeze it so that when he was ready to take milk. All you do is put your hand through the hole in the incubator.

You weren’t allowed to pick him up.

No it wasn’t until [son] was two days old we got to hold him but even then he was on a pillow and he had wires and I was just like that like holding a doll basically and it was like quite awkward cos there was wires everywhere and yeah it was like that, like it didn’t feel like I was cuddling my child it felt like I was cuddling a doll, so. So, the whole thing was just a real like I don’t think until you’ve actually, you’ve done that and I think, I was young as well I just didn’t know how to take it so I was.

After we got out of that cloud bit, he basically he woke up and literally he was in a, as the capsules went down basically he woke up and he woke up smiling and it was, until that point even in neo-natal where I felt like there was no purpose me sitting next to him, next to like next to him cos I didn’t feel like a mum because you know there was doctors and nurses and everyone looking out for him and like there was only certain things I could actually, I couldn’t even change his nappy really cos he had so many wires and I felt frightened to. They all bath- like I couldn’t really help bath that much so I just couldn’t feed him I just felt like an ornament sat next to him and just felt like there was no point. Within that moment that he woke up and he started, like he started crying at first and then he saw me and he, like he started smiling and it was like I’ve got it on video and he actually could like hear my voice and like if I walked round the other side he’d watch me walk round to the other side and it wasn’t until that day like I actually thought that I was there for a reason like yeah it was a lovely feeling for him to wake up smiling, it was lovely. 

Shanise tried to breastfeed her son, but he couldn’t latch on. She felt guilty, but said ‘sometimes you just can’t do it’.

Then as the milk was going up I think we increased our milk quite quickly and we were trying a syringe, well first of all we tried breast but [son] didn’t like, obviously he was out of the womb for about two or three weeks so it was quite hard for him to latch on and for him to know what he was doing he didn’t know what he was doing so we tired a syringe and we also tried a cup just so he could get my breastmilk. I remember we were trying breastfeeding for well over a week and it felt like it was a massive step back to us cos we just wanted to go home. I went home and was like I don’t think, I said to [partner] I don’t think I want to breastfeed anymore it’s not working I think we should go onto bottle. There was people called ‘breast feeding babes’ there and obviously they were like proper like ‘breast is best’ and stuff and they made me feel so guilty even thinking of bottle like formula fed. I think there was quite a lot of pressure for mums to breastfeed, I know breast is obviously best it’s been proven, sometimes you just can’t do it and there’s quite a lot like just think through it, you know, you’ve just gotta ride through the storm, I just found like it was a massive step back. They wanted to try another week before we could try a bottle, I just, I was like basically these few days were going past, I think I was picking up the courage to say no we’re going on to bottle, I think that’s what I was doing I think I knew the right answer. 

Looking back, Shanise reflected that her experiences with her son’s gastroschisis had made her a stronger person.

Yeah, yeah it feels like a lifetime ago, like when I came home cos I put everything on hold I actually had post, like not post-natal depression but depression it was like a back, although we was like home and settled I think it was like a, everything came flooding back and I think that only lasted for a couple of months. It makes you stronger as a person, it definitely does it makes you have a different aspect on life, negatively and positively like when I, when one of my friends has a kid and they’ve got a cold or, you know, I’ve gotta call 111 or something or you take him to doctors and that, he’ll be fine like I’ve got no sense- with that I’m not sensitive about that at all I’m like literally he’ll be fine, it’s a bit of cold.

Shanise started having regular panic attacks while her son was in hospital with gastroschisis.

There was one woman who helped me and [partner] through the whole of neo-natal and her name was [name] [name] and I was having quite a lot of panic attacks and I remember we had to call the ambulance at one time I actually thought I was going to die it was horrible. I came in the next day I told her I had a panic attack, she was our rock throughout the whole thing, there was times that we missed, we just missed the doctors things we used to call for [name] straight away she was majorly in [son]’s support and his care and she wasn’t just there for [son] she was there for us as well. So no matter what I was feeling or what, you know, if we had questions or anything we would just ask her straight away and she became a friend really. She wasn’t so much a doctor she was a co-ordinator she was a bit like the woman who showed us round, she was a bit more levelled up, she was a lovely woman, she was there.

And you mentioned earlier about having anxiety attacks and panic attacks was that throughout that period or?

Yeah to be honest I think it got to the point where I was literally having one like, it wasn’t so much when I was in hospital it was when I was at home on my own, so when [partner] was doing a shift at the hospital that was when I would have an anxiety attack he probably won’t know this but the only thing that stopped the panic attacks and it felt like I knew when one was coming cos I’d have like a pain like underneath like in my rib cage, I used to go out for a cigarette and it used to calm me down and it used to try to focus my breathing and I’d listen to music. So I knew how to bite them in the bud, not bite them in the bud but I.

Nip them in the bud?

Nip them in the bud that’s it, nip them in the bud as soon as it was happening so, and then they stopped so, on my own, on their own, so.

And did anyone when you were in hospital feeling down, did anyone offer counselling or emotional support?

No, I think it was quite hard cos most mums or any other had their partners there but my partner was working, he used to work 12 hour shifts so two 12 hour day shift so he never used to get home until, get to the hospital until about 7 or 8 ‘o’ clock where he could only be there for an hour. My mum obviously worked so she could only come now and again like so literally all day until about 6 or 7 ‘o’ clock I was on my own with there wasn’t really anywhere to go either, apart from the canteen and you don’t really know anyone there was like it was a massive hospital there were people there for different reasons there was nowhere to go there was, there was no support from that side at all.

So you felt very isolated?

I felt really isolated and I’ve never felt that lonely ever, ever before like it was horrible yeah.

Shanise’s son had gastroschisis. At age 4 she described him as a normal little boy.

And does he have any lasting effects?

When he came home he obviously had NG tubes* so we obviously had to try and get him feeding. Cos he was obviously used to the milk we had to try and get him hungry so he ended going onto solids quicker than what a normal baby would, which he did perfectly. Ever since then everything’s been plain sailing. He’s literally a normal little boy now, he has a right character on him all he has is his ears stick out because when he was in hospital his ear kept folding over where he was always in bed so his ears stick out and one ear is lower than the other where they folded over, the nurse used to tell me off when his ears folded over cos I used to put sticky tape behind his ear. But he’s allowed to get them pinned back when he’s older, that’s his decision to make. He’s got a massive scar on his stomach and he’s got his gastroschistitis stoma balloon they can make a belly button for him cos he doesn’t have any belly button, they can make a belly button for him when he’s six years old but again that’s his decision. He has no diet, he’s not allergic to milk anymore, he’s literally a normal little boy, so there’s nothing wrong with him at all. He goes to nursery every day, plays with his friends, the only thing that he has is if he’s ill he’s more ill as in - like if he’s got a cold he’ll suffer, suffer a little bit more with it, I don’t know whether cos his immune system hasn’t come back yet if it’s he’s got low iron like I have which I should probably get him checked out actually he just sleeps and that’s it.

* 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.