And is there anything you wish you’sd had known then that you know now?

Yeah how easy and how hard it can be like not just, what can go wrong but people I think you need to be aware of what can go right and how little, how little things such as like taking a syringe of five mils of milk how amazing that can actually feel. Because you just get warned about everything else like not the, the minor things and what everyone else thinks is the minor things cos to me they were all massive and not that she knows, but to see how she enjoys things like milk for the first time ever is an experience and a half and I wish that like you kind of cherish these moments in like pictures, you just can’st. And for [partner] to wait six days to even hold her was like, I mean that, that made me cry, so it’s those little things that people don’st realise that can mean the world to you and everyone else takes for granted, cos I mean like, my mum came down and visited us a few times, but she didn’st get to hold her own granddaughter for over a month and so did hardly any other family member like people just get to go round and see a new baby for the first time and just be able to hold them but when you’sve been in NICU* for that long and other wards after that it’s, yeah they’sre massive. So, but the second time I think being in hospital was definitely harder cos it was for longer and, I mean, it was double the length we were in the first time and we were warned that we were gonna be in with the gastroschisis* for two months, I don’st think I could have dealt with that for two months like the first time round and never been home but we were lucky after a month. And we actually went down to the NICU to thank them the day that we were leaving and the charge nurse who we got to know really well like You’sre not leaving are you?’s and we were like Yes she’s getting discharged this afternoon,’s she was like No way,’s was like Yeah, yeah we’sre getting to go home,’s and she was like That’s amazing,’s and she actually told us that a little boy with gastroschisis who was discharged after 13 months so it just shows how different people’s stories can be. But yeah the positive story should definitely be advertised as well as the bad points because it just makes you more nervous I think, yeah.

* 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.

* 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.

So I’m just a- when things are hard we just get on, we just do whereas [husband] just sort of, he gets down sort of stops functioning. Yeah just a different styles, he would just, he would just want to ask questions of me all the time and I didn’st really feel I had the answers or feel like, I don’st know, yeah it was just messy and difficult and then, you know the sleep deprivation neither of us coped well with that so we, you know, I was, I was, it was funny I was like so thrilled to have her and, you know, she was turning into such a wonderful wee thing, but at the same time being physically wrecked with the, you know, I feel bad because I’m aware there’s people here maybe about to go through this but are gonna hear it and, you know, lots of it was joyous and if I’sd known at any moment in those six and a half weeks where we would end up you know, it would have been so helpful.

Mike: Yeah, and I mean again, I gloss over the fact that I think, before this, probably a couple of months before this, we both probably had emotional breakdowns at some point or other. Because it’s just, I think after about three months of it, I’sd had enough and we had a big fight on the phone, at one point, and I think I smashed up my phone as a result just because you’sre so stressed and tense towards her. So it’s starting it’s starting to take its toll on us as well. At that stage, because it’s just a long term. You go through two or three weeks to two or three months. And each time, it seems like a ridiculous amount of time to be in hospital.

Yeah and this is.

Mike: two or three months, if we’sd known if we’sd know we’sd be there ultimately for ten months then you just wouldn’st, you’sd have cracked, at that point. Knowing that you’sve got that much more ahead of you and actually, worse times than you’sve already experienced pretty bad times so.

Fiona: And also we were [inaudible speech] I used to see [son] once a week, I think when I was and that was really hard. And it was almost like we were two separate families with you and [son] and then it was.

Mike: Yeah, and he

Fiona: [daughter] and I.

It was really hard to see and sometimes you’sd come in after, when she’sd had the exomphalos* pushed that little bit in and how much pressure it was then putting on her lungs, and how challenging her breathing was and, you know. And seeing your child hooked up to machines and, you know, seeing needles in their heads or morphine going into them and it’s just so surreal. And I think that, and your emotions are just on another planet. It’s just something that when you’sre in the moment, you can’st see the other end of it. You can’st, you’sre so anxious. You’sre so upset and it’s what to do with yourself, what to do with your emotions and how to cope with it. It’s something that you’sre, I wasn’st prepared for.

I can’st speak for everyone but I wasn’st prepared for that and what do I do with myself and, and who am I? My identity was a mother that, do you know, that was it. And then, when we finally left after three months, I just I didn’st know who I was anymore and I didn’st, I was so scared, you know, and here I was this older mother and the expectation that I would be fine going home with this baby and I was petrified. I had been in hospital where she’sd been monitored every second of every day. I remember the first week we moved out of ICU, she took a turn, her breathing, when we were on the unit. So I was alone with her in the room and her breathing became laboured and I was petrified. It was in the evening. The nursing staff was, you know, skeletal and it was smaller staff. Not the doctors walking around and I was petrified. I was so scared watching her and feeling like I can’st do anything, where’s, you know, please come quick and I mean the nursing staff was excellent. They came to and they, I think they had to calm me down more than, you know. She quickly was fine but it really, really frightened me and I thought, will we have to go back to ICU and is this a longer road? And I think you read into every little thing that happens to your child. You, I don’st know, for me, it was just making it bigger. But and my husband was saying, you know, Is it, are you just. I, he, he was just kind of phrasing it like, You’sre seeing everything negatively.

But I think for me, it just was about how I coped. I had to look at the worst case scenario, like when she was in me and I still was, She might die. And I had to keep on a path for me, you know. Some people might be different, they might just think, My child is going to live. I’m going to stay positive and optimistic and this is how I have to cope. For me I had to always think that she might still die and it was horrible to hold that beside you. But for me, it would be the only way I could cope if she did. I had to be realistic I guess. I just always kept that and I probably asked, you know, the surgeon more than once about, you know, what’s the possibility? And I mean he can’st tell but I was still asking.

* 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.

So how have you coped through all this?

Next question [laughs] I don’st know and that is the honest answer I don’st. I, you know, I don’st know how, if I’sll, I will cope with [son] having more surgery cos like I say his last surgery was when he was, his last major surgery was when he was two and I just used to hide away, didn’st want to talk to them because it was, you know, always negative news that you were given and then I found out since then that, cos this was right when they started introducing like the carers to him, that were going to be looking at after him over night. And the one that’s still here, she told me a couple of years ago that she was told that [son] wasn’st going to make it. And it’s like even then, even though I knew he was here I knew he made it it’s like, you know, a knife in your heart. And I knew it, I knew it I just didn’st hear it because I didn’st let them tell me.

But you know this stuff don’st you just from looking at yourself and, you know, being there and yeah.

Yeah. And it never goes away, you know, even, even now and this is the other thing that, you know, that I feel that professionals need to take on board just because you’sre seven years down the line, it doesn’st meant to say that it’s all gone away because it hasn’st. Because it’s very much still there, you know, I still panic that [son]’s diaphragm is going to come away, I still panic that all the scar tissue in his stomach is gonna you know, screw up and because if that twisted and triangulated, he’sd be gone, you know, there’s still and it petrifies me, just as much as it petrifies [son] of wanting him to have more surgery because it’s never gone smooth, you know, each time we’sre told well he’s older now so, you know, he’sll cope with it better and it’s like well, don’st happen.

On a number of fronts as well as it being a step towards home all be out it was a way off, we knew that, but it was another step towards home which for so long we hadn’st known and hadn’st dared hope that home might happen because as soon as things[started] to improve there’d be another setback with surgery and then he’sd recover and then there was another [setback], do you know, what I mean it’s like having got back to [local city] was a massive milestone for us on a number of fronts. And then so quickly to become poorly again and go back through all the old is he going to make it, what’s causing it, what’s the problem all was, it just took the wind out of my sails and I fell apart basically yes at that point I struggled. And I’sve struggled on for a little bit and then I’d seen posters up about the BLISS charity having a helpline and so I rang them because I knew I was struggling. I wasn’st daft as well as everybody seeing I was struggling, telling me I was struggling I knew very well what was going on in my head and I just couldn’st see how I was going to get through much more of this really, starting to get your hope and then having it dashed again. So they arranged counselling for me.

And how has it impacted you two as a couple, it’s been a tough year?

Yes definitely and some times have been easier than others and we’sve certainly pulled together very strongly at the beginning and then when I started to fall apart I think I started to pull away but that got, once I had the counselling then that very much helped on that front. And I think now it’s just, just different isn’st it because there’s three of you in the equation and there’s just very little sort of couple time if you like because usually you see by the time [son] goes to bed I may even have gone to bed before him to try and get because I’ll be the one who usually gets up in the night or gets up to fed him which can be, sometimes it’s not until 7 o’s clock but it can be four, five, six so yes there’s, it’s very different but it’s just how it is isn’st it.

It passes

Yes, we’sll maybe get a babysitter one day but.

So after the surgery, I think when your child is going to have surgery you do everything you possibly can to stay strong until that point and there’s adrenalin and there’s support from lots of different sources right up to that point and the surgery happens and almost a lot of that support goes away and you’sre left thinking well you, for me I knew I had to be strong up until the point of the day of her operation, I didn’st realise I would have to keep being strong, so strong afterwards. So and I think a lot of the community nurses and the health visitors were all, we all had this date in our minds and on that date [daughter] would be fixed and it was not like that at all. We came back from hospital after her operation and that was when we had the suspected hernia’s*, greater risk of bowel infection and the things that we weren’st told like [daughter’s] bowel was going to be hyperactive after the surgery and her poo would be very acidic. So what we had to use was a mixture of a barrier cream and an alkaline cream to save her skin because it burns the skin, and keep changing her nappy like every ten minutes. And that was, it felt, it doesn’st sound it but that was quite stressful because every time she was constantly going to the toilet and her skin was getting all burnt and that was awful. We had no idea that things like hernias could happen and they then told us when she had the hernia or when it was a suspected hernia that that could involve another operation and this was just a few days after surgery so that is quite hard to handle. And so all of these things and I think I certainly started to find it really hard after surgery I was really feeling quite weak and emotional and how long do I need to be strong for because I’ve done everything in my power to be strong up until the point of the surgery and actually after the surgery was really difficult as well. Dealing with a baby with, you know, wounds and then the other thing we weren’st told until after the surgery was the bowel the bowel can shrink and I guess then you’sve got the scar tissue so it can shrink the skin surface so effectively [daughter’s] bowels could start shrinking and all the pipes could become thinner and she would be constipated, and that happened. You have to use a dilator with her every day which is like a metal thing that you poke up her bottom to make sure it doesn’st shrink but it did shrink. So then we had to and again the worst possible outcome there is more surgery to stretch the bowels. So we had to use a bigger dilator and do it more often and those things were really, really awful.

* Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

It’s been horrendous so not that I was stressed but it’s the tiredness. I’sd only had major abdominal surgery like just getting over that on your own is, you know, is great fun but looking after two toddlers as well and then not getting back home till sort of 1 o’s clock in the morning at night after driving sort of constant, well my husband was driving at that stage. It’s exhausting so yeah I lost quite a lot of weight which I was happy with [laughs] but it’s the tiredness cos I think you just go into overdrive and adrenalin does kick in but there was, but if you stop, it’s when you stop that’s then if you sat down it was like actually I am absolutely shagged, yeah pretty bad. But apart from that you do just, you just carry on.

And who, so you and your husband were obviously spending a lot of time together supporting each other.

Yes.

Who else was giving you support in that time?

So everybody, everybody was amazing. So some really close friends who live up the road they were helping with babysitting, my mum my husband’s mum everybody says they’sll, you know, they’sll do whatever you need and it’s really good. But yeah mostly close family and close friends, yeah.

Okay, yeah. And do you feel did you have enough support, enough emotional support in that time?

Yeah I’m not really an emotional support person [laughs]. for me as long as someone’s explaining to me what’s going on I’m fine it’s when people aren’st communicating that’s what will rile me so I’m, I’m pretty good just bumbling along as long as people are explaining things. my husband was a little, he’s a little bit more emotional than me he found things a little bit more difficult like when she had the meningitis and he’s a lot more of a worrier than me. But yeah so I would have to try and explain things clearly to him I think he’s quite good, he sort of looks to his mum when he needs to talk things through as well.

Simon: It was all the way through it was more of a case of you had to cope there wasn’st time for emotions and feelings it was things had to be done and, you know, just get on and do it. A lot of it as well was you didn’st know what to expect and because you didn’st know what to expect, how could you be emotional, you know, about something you didn’st know nothing about?

Yeah.

Simon: And, I mean it’s easier to talk about it now 13 years on because of what we know because we found out because of where we’sve been, who we spoke to and everything like that. But there’s, you’sve just got to draw positives from it all and if you start looking negative, it’s a negative atmosphere, you know, I mean everything starts to feel bad then whereas if you constantly drawing the positives, yeah you can have relapses but you pull through, there’s your positive. And there’s, you’sve just got to find the strength, draw it off people, doctors, nurses your own child. And you’ve just gotta move on through it.

Sally-Anne: .No two ways about it I looked at everything as a negative.

Simon: I mean you walk into intensive care unit you’sve got a little bed with a little child sitting there with thousands of wires coming off going all over machines and you’sve got medicines and you’sve got this at the end of the bed you’sve got the board the electronic board. All you can hear is the sounds going bing bong bing, bing bong constantly just drums through your head. As bad as what it looks it’s there for a purpose its doing a job and that, that’s what a positive is, you know what I mean it’s as I say as bad as what it looks, it’s doing good.

Sally-Anne: And that’s that was one of my, that’s one of the things that I pulled off Simon, you know, what I mean, every, everything that I looked at as a negative Simon would show me a positive and that’s why I’ve always said that Simon is and was my rock and he always will be, all the way through there. Because in and throughout even now to this day, you know, when [son] has his issues Simon will always find a positive and when you’sre dealing with something like that if you haven’st got the ability to find a positive yourself it’s a very dark place to be. But when you’sve got somebody who’s got the ability to find that positive and to show it you, it makes it easier, you know, because Simon, I don’st know how he done it and even now to this day I will never, ever, ever be, you know, I’m eternally grateful for what he did because when I was looking at everything in a negative way as I think, most mums would do Simon would point out the positive. You know, when I first walked into ITU and I seen all those machines I was like oh my word, do you know what I mean, it scared the living daylights out of me and then Si turned round and says But Sal them machines are keeping him alive, them machines, you know, its them machines that are doing what they need to do’s. And he says, you know, he says you watch give it a few days and one by one they’ll all start coming away’s. And straight away it was okay it’s a bad situation, it’s a dark situation.

She said, I notice you cry more when he’s around. And I think it, it was a time when I could release. I think through the pregnancy, he found it really difficult. I think it was quite, it was quite shocking anyway that we were pregnant and then the roller coaster of the pregnancy, I think it was just so much for us to cope with as a couple. It was a really difficult time and then when she was in hospital, he was so optimistic, whereas I was so realistic maybe or he may say I was pessimistic. But, you know, for me it was how I coped. He coped by being so optimistic that, you know. I remember one time I was leaning over the bed looking at her and she was on an oscillating machine, which was where her body was jumping and she has pads, gel pads on her eyes and this is our maybe by then, maybe six week, eight week old baby jumping in a bed and totally out and I’m just devastated watching her. And I had this red hoodie on and I put the hood up and, I don’st know if I was cold, probably emotional shaking myself and he took a picture and put it on line and said, Oh Amy looks like ET. You know, and I mean this is this is just and e-mails. And the emails, he kept other people informed and they were always very humorous e-mails he was sending out and I finally sent an e-mail out and said, This is hard. This is really emotional and it’s not like he’s describing it. You know, you think it might be a fun time and this is not fun.

Clare: You were very focused on sort of getting the

James: I just wanted to fix it.

Clare: Getting it dealt with yeah.

James: I didn’st want to get involved in emotions because that would not help because if I start crying, you know, as you were, then we’sre both just crying and nothing’s happening so I was being, it was actually bloody hard to be like that you know, it’s fine to do it in a work sense, you know, and we do that all the time, but actually when it’s something that important to completely remove yourself from the emotion and just be tell me what I need to know, you know, you mentioned the questions there, that was actually my idea to do kinda do like a little thing on it and my priority at the time was to kind of help [mother/wife], at the time kind of focused on something other than the negative. But I think yeah having that, that appreciation of how you should manage yourself.

Clare: Some support with that would be really nice.

James: But also how you support your other half who is probably at that point in time more close to the baby than you are because of, you know, breastfeeding, you’sve just borne this child all this kind of stuff how you manage them and help them is incredibly hard. In the build up to, during and after, I would suggest. So yeah I think that might be something to consider, I don’st know how it will work maybe that’s up to me to arrange.

How, just tell me a bit more about that, what would have, what would have been helpful, what, something to allow, something to allow you to feel emotions or?

James: No, no I don’st- I was so not at the point where I wanted to feel emotions. Cos that wasn’st helpful, it probably would have been in reality.

Clare: I think some sort of talking therapy or something might have been useful to just support the process between, okay you’sve had this big diagnosis and you’sre gonna have this operation and, you know, what happens after that is still quite up in the air albeit, you know, there’s a worse option but, you know, we still didn’st really know quite how it was all gonna pan out and what the implications were gonna be longer term and we just kind of trying to get our heads round it all. But just, you know, the sort of talking therapies that you hear about I think probably would have been useful, it would probably be quite difficult to get people to take that up but I could imagine people would be quite kind of nervous of that but even just, you know, some links with, with the support groups with the parents groups. I mean I know that hospital now it was literally forming when we were there being treated after the operation the support nurse started to do a lot of very active work setting up support groups but and putting you in touch with a couple that were kind of just starting themselves that had been sort of brewing.

And actually it would have been really helpful to have been put in touch with them before the operation and I know now from those support groups that there are quite a lot of mums and dads that come onto the Facebook pages or the website or the e-mail groups and will say, we’sve just been given this diagnosis we have no idea what it means we’sre expecting this big operation and, and I look back and I think of our experience and I see their experience and actually, I think it’s probably really good for them that they’sve got that now, they’sve got that outlet, they’sve got other parents with a shared experience but also with a really good perspective, because most of us that are still involved in it, you know, that many years on are able to say I know it seems like the worst thing in the world right now but it’s not, it’s gonna be okay, you know, one way or the other.

Sonya: We said afterwards we felt like we’sd kind of passed our first test, first time parent that was kind of when it felt real. Because it was up to then bumbling along changing nappies feeding and it seemed quite easy and all of a sudden there’s something huge and we coped.

Adam: Yeah.

Sonya: I think we passed.

Adam: Yeah I think it was really strange for me because I’sd just gone back to work and I was in a meeting when Sonya called and I thought this was a bit unusual so I went out and I just literally I said, I’sve gotta go’s and just left the building, so it was within sort of for me I was snapped, I was in work mode and an hour later I was in the emergency ward so it was even, it was even odder.

Sonya: It was terrifying.