Just communication that’s my only thing, you know, cos if you’sre in the dark that’s when people would worry or, you know, as long as you, you know, either good or bad, what was going on and a lot of the things you ask them they don’st know the answer because it’s a time will tell kind of answer, but so long as someone tells you the time will tell sort of answer you’sve got an answer. So yeah communication’s the major thing that I felt let down with. But apart from that, I mean they’sre amazing, the nurses are amazing what everyone does is amazing and we’sre extremely lucky but yeah just communication really.

I think the proper low point was when towards the end when we were talking about, we started to introduce feeds so she’s getting it via her NG tube* was she? Something like this, yeah so she was being fed versus- through the NG tube and the idea of it being increased to an a number of mils each day and what I had asked, you know, about when they thought I’sd be able to start feeding her because we were at the sort of six week mark now and they had told me if you don’st initiate breastfeeding by about that time then the baby has lost the skills that they need to be able to do it, so I was a bit concerned we might losing that window and kept asking do you think this is gonna happen cos she’s at about 8 mils and we had all these rules about when she had to get to, I can’st remember the numbers but say its 12, she had to get to 12 mils before you can wait to try. So say that had happened one day and then I’sd come in the next morning to come to the rounds the early morning rounds, and where she was just across from the kitchen. So when I saw the round coming I’sd gone to the kitchen to put back my cereal or whatever it was and they’sd all come into the room and they didn’st know I was there and so they are having the round and she, this doctor’s relaying the case to her colleagues and she was a registrar I think and she says Oh yeah I’sve had mum on at me again you know, about breastfeeding,’s and she rolls her eyes and she spoke about me in this really not very nice way and I honestly had not been difficult, we hadn’st, as a health professional I always think that you’sre, you understand the other side and also I just didn’st want to be seen as difficult, and also just didn’st have the energy, all we’sd done was ask questions.

And so she talked about me really rudely and you know, I come in at the back and hear all of this and I just look at her and her face just fell. But what really bothered me about that day was that it told me that the culture was that it was okay to speak like that because there was no-one else looking shocked, all her colleagues on the round were just nodding and so she obviously didn’st feel, I’sve never worked anywhere where it would be okay to speak like that about a patient or a relative but it was obviously okay there. And it was just awful, I mean for me just to see the look on her face when she realised I was there that was enough we never complained about it, all her colleagues had seen it, it must have been the most humiliating thing ever. But it was really awful and that was the moment when we just thought oh, you know, these people see us as part of the problem they don’st see us, like to me we’sre part of the solution and like we’sre the ones that have got to look after this little thing when she comes home and it’s not gonna be easy and I would have thought it would be worth keeping us on board but I just think they saw us as just a pain in the neck. And the other thing I think a lot of the parents of babies with gastroschisis* like we don’st fit any of the boxes, mostly they’sre young, problems with drug use, poor backgrounds, you know, we were none of those and I just don’st think they were used to maybe dealing with people who were more informed or more challenging, I don’st know, maybe they’sre just used to dealing with people who could quite easily be dismissible, I don’st know.

They also have lots of children there who are there because of the parents because of neglect and abuse and, so they just had a funny mixed up perception about parents I think, it was weird. And so yeah that was the low but, you know, we did meet, you know, the consultant I can’st remember what she said that day but she did she did say something to sort of to deflect the situation and, but she never said anything about it afterwards, never apologised for her colleague or anything. But I did in the end we sort of came to a sort of, you know, I liked her, I respected her and when we saw her in clinic later, she was nice but again there was something about when I came to a clinic appointment maybe about a year after [daughter] was discharged cos by this time I’m back at work, so I was in work gear had my hair done for going back to work. I was feeling, you know, I was strong again I was normal and I can remember her just looking at me going oh gosh I could see that she just saw me differently and so for me I was left with this idea that we were judged based on how we were at one of the most difficult points in our whole lives, you know, we were been living in a house that was a wreck our baby was ill I had this arrhythmia, I was a wreck. And I thought that was a shame that we.

* 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.

The strength to talk to the medical professionals as well, I wonder whether that comes from.

Yeah.

That, that knowledge that shared knowledge yeah.

It does because you can put on, when I was in hospital with [Name] and all the medical professionals didn’st know why she was shutting down, they hadn’st at this point figured out that it was her reflux, you can put on these are the symptoms whose kids had this and you’sll get ten parents who’sll go, Have you asked this, have you asked that, have you asked this, is it tracyemacia have you done this and my kid had this experience and they ended up having that.s So yeah the surgeons need to learn how to not go Oh the internet’s every time you suggest that someone has [laughs] mentioned this to you [laughs] because it’s not just Googling symptoms and getting an answer it’s asking a forum of parents who’sve been through exactly what you’sre going through. It’s like sitting in a room with 500 parents whose kids have got the same experience and had the same problem who’sll all have widely different experiences of it and the surgeon just going I’m not listening to any of you lot,’s what surgeon would stand in a room of parents and do that but because its’s on the internet it seems to be acceptable to go Tut, Facebook.s

Yeah, but you’sd never sit in a room full of 500 parents and if you said, What are, what could these symptoms be’s and ten parents put their hands up you’sd never go Oh, I’sll ask but I’m not listening’s [laughs] but it seems acceptable in an office or at your child’s cot side when you go Some of the other exomphalos* parents have experienced this with these symptoms can we investigate it?’s and they go Oh no, definitely can’st be that, can’st be trachymalecia, I can’st hear any stridor that’s because she had vocal cord palsy [laughs].

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop 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.

I have to say as well I think, I think because I had been ill, I didn’st ask many questions that first week and I kind of didn’st really have a clue as to what was going on in all honesty it was only retrospectively that I could piece together the things and that’s kind of just how, how it is. but I did find as well quite striking and I think, I don’st think it bothered me as much because I think I was just so kind of just, you know, my head was just in a slightly different place but then you don’st really have a choice with, as an adult if somebody says I need to do an operation on you, you kind of have a choice so you kind of have a, even though it’s, you know, there isn’st really a choice but you do, you do have a choice. I realised with neo-natal you don’st really have a choice you’sre just being told, like I and I find that, I find that quite strange as a kind of a very like I would think responsible and very loving mother that I’sd no choice really in how my child is being treated. And I think probably as well although everything was, you know, properly consented and everything not everything is consented really because it doesn’st have to be consented and it would be silly to consent it either because some things just have to happen at certain times and they will get done at certain times. But I find that quite that lack of control quite, quite hard in some ways. But it’s necessary, it’s necessary but I did find that, I did in some way I had no choice that somebody put a stoma into my son. But obviously it was the right thing to do and I shouldn’st have been able to stop it or anything and I wouldn’st have wanted to stop it as it was the right thing to do but at the same time I had no choice that that happens anyway.

And so your main communicators on the neo-natal ward were the nurses?

Nurses and doctors.

Both of them, okay.

Yes definitely at [local city] we saw a lot more of the doctors at [local city] than we did at [city]. I think because it was a smaller unit and most days they would use, they would see us there and come over at some point to talk to us and give us some update whereas that didn’st happen so much at [city] we didn’st see the doctors anywhere near as much. and we had a bit of a hiccup when we got to HDU at [city], it seemed to be, I don’st know whether it was just, it’s always like that but it just appeared that we were there, there seemed to be a different consultant every day on HDU and so there was, it became quite disjointed, One day you’sd have a plan and it was ABC change medication to this that and the other and what have you, next day it would be a doctor and they’sd have a plan but there didn’st seem to be any reference back to yesterday’s plan and so it was OK we’sve got a new plan, but what about yesterday’s plan. And things got a bit disjointed and we had to do a bit of chasing up there and asking to talk to doctors and for clarification about things because things weren’st the continuity of care wasn’st there it just got a bit messy at times.

Because it was a bigger unit or? The way they were staffing?

I think it, I got the impression it was the way it was staffed because it seemed to be that there was a different doctor, a different consultant each day is how it, it seemed. And I know you tend to get that over the weekends going into weeks but it seemed to be in the week as well, it was an ongoing problem. So there were a few issues there but certainly at [local city] they were just so [laughter] free flowing with information that you very rarely had to ask a question because they’sd told you the answer before you realised you had the question, it would be Any questions? and there really weren’st any because they’sd just given you so much information.

They did do other things. So I don’st know if I was always necessarily informed beforehand. Some, so I mean somebody would go round in the morning and, you know, you had to leave when the doctors did their rounds. And sometimes it didn’st always get fed back what was going on in those rounds and I think that communication, there could have been, I don’st know if they, I didn’st know sometimes whose responsibility it was to then let me know and.

Even now I don’st know who then should have told me some of the things. You know, Like I say one nurse told me about the tracheostomy and then got in trouble for telling me.

And I felt really bad but somebody should have told me. So I thought, no, you know, I felt really bad for her but somebody should have told me so yeah. Where was I going? [Laughs].

Just other investigations.

Yeah, so sorry, yeah.

Yeah.

Yeah so there probably could have been a way, so I didn’st always know so, at one point, they said to me about the tracheostomy thinking she had small lungs. And in the end she didn’st because they had done that investigation but they hadn’st got the results before they’sd come to me about the tracheostomy. So for me, at some points, it was a bit of head scratching thinking, well, I would have thought you would have already done the investigations before coming to me. And then with her heart, all of a sudden there’s somebody doing a scan of her heart. So I don’st know if they necessarily had to tell me. Maybe it would be more, I guess maybe courtesy or maybe just keeping us in the loop about, you know, because if they had have found something.

I, for me, I guess maybe it’sd be different for different parents or maybe there’s somebody up front to say, How much information do you want to know? I don’st know. Maybe there’s some way of doing that piece of work with the parents and, and saying, Where are you at? And, you know, even if that is a tick box we do when we first come in about what support we need or what have you. But I think that was always an issue for me. It was about information gathering, so where do I get it from and who’s the best placed person to give it to me?’s And that was something I was always trying to sus out. I really don’st know where that was even now.

You know, who was the decision maker? I don’st know. I don’st know because sometimes it was the surgeon, sometimes the consultant and about them working together and I don’st know where we fell in that kind of group of people.

Sometimes it felt like we were part of it and sometimes it didn’st and I think it depended on how strongly I felt about something as well.

Antonio: So we thought oh this is not going to be good news if they are calling us it is because they, they have something to tell us, [son] was fine so I don’st know, what could be wrong. So it was the consultant telling us that they have tried everything, [son] went through some episodes of he didn’st have heart failure at any time but there was potential to have heart failure at some point because he has been in this high ventilator for a long a long time all the nitrate and he’d had lots of liquids inside of the lungs and some of the lungs, well the good lung was collapsing. So because of all these ups and downs he was very poor that day before and then the consultant on the Friday, it was Friday night and she said, Well I called you back because I think we can still play another card in this game but the problem is that we cannot give that treatment here in [city] and this will represent another transfer to another hospital, she mentioned Leicester, Glasgow, London and I think Southampton again. But she said that the problem is that we cannot well the ones that are close to us, Leicester is the closest, already we checked with their movement so we are just looking at Glasgow at the moment and she shared with us a check list and it was quite shocking because the check list just tells you which are their requirements for that particular procedure to happen and [son] was just in the border of them, like you cannot move to these procedures if you have been like 12 days in the high frequency ventilator and he had ten already so he was very close to getting to the, into the limits and so it was quite frustrating to think that there was another choice but probably you were out of the requirements.

What was that choice?

Antonio: Oh the condition is called the ECMO*(Extracorporeal membrane oxygenation).

Oh the ECMO.

Antonio: The ECMO which is when they open here [indicates neck]. She explained everything and it was quite, well it was horrible to try to think about the whole procedure to follow for [son], we thought well this is what you’sre thinking is the best for us.

Alix: We were very shocked when she told us and we were very emotional, she was emotional telling us about it wasn’t she?

Antonio: Yes.

Alix: And yes that was quite a big shock, and then we were going we left probably about midnight didn’st we.

Antonio: But I think it’s good that the consultant came with information for the parents that would with a leaflet it was just print out from a computer, right?

Alix: It was a case study or something wasn’st it.

Antonio: Case studies with these are the conditions, well this is the condition, this is the treatment, this is what we tried, these are the numbers which are good to share, I know they are quite shocking for parents but it’s okay to understand which are the consequences of the decisions that you take and it’s good that you are involved the in this type of conversations to help to take the best decision. Of course they are the experts bit it is okay to understand. Again with the diagram showing you the ECMO and the, that was really, really good graphic, right, so I think that’s something probably not with pictures but with drawings that explains the procedure. So we were told to go back to the house to rest because of course it was midnight and it was hard to leave the hospital; at midnight but they were going to organise everything for next morning to take, and we asked about the plane and train and all that stuff and they were very helpful at explaining about the service that the NHS has with the planes from one place to another and it was great, it was just incredible and quite fascinating to see all the technology that is around and all the effort that the teams put to really bring, at some point we thought are you really losing hope are we really not fighting for [son] but then.

* Extracorporeal membrane oxygenation (ECMO)
ECMO is the use of an artificial lung (membrane) located outside the body (extra corporeal) that puts oxygen into the blood and continuously pumps blood around the body. ECMO is used by babies and children with severe heart or lung failure.

And did they prepare you for a bad outcome or?

Hayley: Not till really late, late, late. I think they just always like they always just hoped that he would get through, he’sd been through so much already. And it wasn’st until the respiratory specialist came and spoke to us in a room.

Thomas: It was only, he was only oscillating, so he was, he was intubated on a ventilator and then he got worse during that period so he was onto an oscillator and then he came back off the oscillator and then went back onto the ventilator. And then he was off that for about five days and then he went back on the oscillator and that’s when, that’s when they said look its- he may not have-

Hayley: But he took us in a, he took us in a room and he was the doctor that we always liked, you know, obviously respected and liked to listen to and he’sd always be- he always used to do this [gestures moving motion with hands] which meant we would get him through or move him along and that’s what he always used to say and that was the first conversation I ever heard him say this may not go the way that we hoped, and I was devastated. But then they took him, then they took us again a week later and said that if he carried on the way he was going, you know, the next week we might have to think about, we might have to think about turning the machines off and things because it was not fair on him.

Thomas: It was going up, going up and up.

Hayley: He was getting worse and worse and we just couldn’st even think about it. But they said let’s get through this weekend, this was the Friday wasn’st it, we’sll get through this weekend and see how.

Thomas: No this was the Thursday.

Hayley: Thursday and get through this weekend and see how he’s doing on Monday and we, we’sll have a meeting then. And on the Friday he passed away so we didn’st have to decide.

Thomas: Yeah. He took it out of our hands so to speak.

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop in the womb. Some of the babies intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

It is NICU there was one nurse in particular that I really got on with, she was very difficult to begin with and I don’st think I liked her to begin with because she didn’st really talk to me but I eventually found out she turned round she went But I wasn’st getting to know you the first couple of days I was getting to know [son] and I wanted to know every detail about him so I could tell when something was wrong,’s and she did, [son]’s ventilator wasn’st sitting right one day and his monitors were all fine and she kept looking going He’s not right,’s and I was like But he looks fine,’s she was like He’s not right,’s and she was right the ventilator had moved and she just knew that by looking at him, and I knew from that second she was, I was like I will trust you to the ends of the world and it was lovely cos even when she didn’st have [son] she would come round and How’s my boy,’s and I didn’st really have that with any other nurses in there, they’sre very good with watching the baby on the day but then they don’st, they move onto the next baby the next day. In cardiology again they’sre good but I think the nurses are amazing I will never go on about their work or, they’sre there all the time but some of their job was taken up looking after babies because parents aren’st there and that used to frustrate the life out of me because they’sre not a mum, they’sre a nurse and if your baby’s in you should be with your baby and there was quite a few people there that would leave their babies all day and only visit for half an hour, leave them at night and if these babies were crying and they do something because they’sre crying they’sve gotta pick them up which means that other babies are missing out on medication times, you know, they’sre gonna be late or missing, you know, getting their dressings changed or just because they’sre having to do mummy stuff to other babies.

And just talk me through the beginning of that period, so you had a, a meeting with the surgeon who gave you the results and explained what the plan was?

Clare: Yeah and then I can’st remember whether it was then and there or if we’sd, I know we’sd sat down having understood what it was and written out the most enormous list of questions and I don’st know if it was at that appointment or a subsequent appointment but we took the list of questions in.

James: No you’sre right, I remember.

Clare: And went through them with the consultant and actually again that was another thing that he very patiently sat and went through every single one of those questions, however stupid they were, you know.

James: How many times he’sd heard them, no doubt.

Clare: Yeah and it didn’st.

James: He wasn’st fazed, he wasn’st awkward he was just Okay, let’s do it’s.

Clare: And even to, you know, we had questions in there that were kind of, does he even have to have the surgery is there another option, you know, can we wait, can we wait until he’s older, you know, we’sve got him this far now, you know, do, is it of any benefit for him to be bigger and stronger, you know, and all these kind of things and

James: I think we even had survival rates, you know, is there a risk of death in surgery. Yeah it’s not something you want to say but I think it was, we sat down we said, you know, we have to be prepared we’sve got to sit down now and actually consider-

Clare: You know, we needed to understand the position and actually his, his honesty and how forthright he was with us in a very professional, very calm manner was, was really.

James: Spot on.

Clare: Yeah.

James: It was reassuring in the sense that he was confident in his replies to us

Clare: Yeah it was that as well.

James: There was no kind of ambiguity umm and arr, you know, this might be difficult to answer, there was none of that, it’s that and I know that because I’m a bloody good surgeon. I mean he didn’st say that but you could tell.

Clare: He didn’st say as much but he definitely got that across yeah.

James: Fine, good [phew].

Clare: I’m a real expert in my field, we just, you just knew and the confidence that, you know, because you’sre handing over your most precious thing to this person who is going to put them under anaesthetic and disappear into an operating theatre with them and you hope they’sre gonna come out the other side. So to have that level of reassurance.

James: Confidence, not arrogance, confidence not arrogance, got it absolutely right. If they’sd been arrogant, that probably wouldn’st have helped but just that warm confidence in his responses just, for me and I think for you too was spot on, perfect answers, spot on.

Clare: I was never gonna be that happy about handing him over for it ever but-

James: No but relatively speaking.

Clare: But it was the best it could be.

Yeah I got really cheesed off.

Tell me a little bit about that.

So it got to a point where yeah they were, I needed to speak to a doctor and I could not, no-one would communicate with me. So the nurses would pass on the message that I would wanna speak to a doctor and then I would get told that a doctor was gonna phone and then I would wait all day and then the next day would come and till I wouldn’st get a phone call and in the end I got so irate [laughs]. I knew that I couldn’st actually phone them because I was just gonna explode so I got my mum to phone and she made it pretty clear that I was pretty unhappy and I just needed to speak to someone. Cos my daughter’s in intensive care I just need to know what’s going on just a few simple questions and then at that point someone did phone me and then still even after that phone call there was still communication problems. It was, we were just always, we were always told that everyone was so very busy, which is fine but sometimes if you’sre not in the hospital and you’sre far away you might just need a phone call or even, yeah even something written down that you could read. Because they have yellow notes while they’sre in hospital and you could see the nurses filling in information, the doctors and we weren’st allowed to read those notes.

So someone did ring me and tell me she’s out of surgery she’s fine it went well we’sll be going back to the hospital because the surgery’s done at a separate hospital to the one she was in and once she’s back we’sll let you know and you can come and see her because she might be ventilated, you know, she sort of needs to come round and is, you know, there’s, you know, if you’sre not there there’s nothing you can do, I knew she was okay. So I went, sort of walked round [city name] shopping just mooching around, it was summer so it was quite nice to just go and walk around. and it got to 7 o’s clock that night and I’sd actually, I was in the hospital lobby when I saw her being wheeled through the unit, and I thought right she’s back they’sre gonna phone me soon, you know, let me know what’s happening and it got to 7 o’s clock that evening and I still hadn’st had a phone call. So you’sre thinking right is there something wrong, you know, surely they’sre going to be in touch and in the end I phoned them and she was back and she’sd been fine it was just miscommunication and no-one had phoned me. So by then it was nurses change over so I still couldn’st go up there because they didn’st like parents in there, in the rooms when they were doing the nurses change overs and then it was doctors change over, so by now it’s like I don’st know half past 8 at night and by that stage I was so furious because there’sd been miscommunication and is my daughter dying is she fine, is there something complicated going on, but just hadn’st heard from anybody.

So I rang my mum and just asked her if she’sd completely blast them out cos I was so pissed off and she did she rang them to ask what was going on and they said they were really sorry and I said that’s not good enough I’m really hacked off. And so I went up eventually and unfortunately the nurse looking after her wasn’st, was foreign which is absolutely fine I have nothing against foreigners but when you need to ask someone about surgical procedures or what might have happened, communication is so vital so when you’sre speaking in broken English to someone it’s really difficult to know what’s going on. So that was all a little bit stressful yeah I was not happy about the situation after she came out of surgery.

Angie: And that is another thing though we were drip fed information throughout the whole time.

Luke: Even when we specifically asked.

Angie: Yeah even, especially when we specifically asked.

Luke: You know, is there anything else we need to worry about, is there anything we need to do differently how do, Nothing you need to worry about just treat him as a normal child,’s okay. He’s.

Angie: So we went to a consultant appointment and we said, you know, and they said, Is there anything that you’sre worried about,’s yeah actually he got a cold, he got the same cold that my girls had she coughed within days, you know, and he was still under the weather three weeks later and, you know, is there an immune component to Hirschsprungs. And he said, Oh well yeah there kind of is, we do find that it takes them longer to shake illnesses off quite often Hirschsprung babies are hospitalised with coughs and colds.

Luke: And we do have children hospitalised with.

Angie: But you said to us treat him like a normal child well obviously we do that, we take him out places and, you know, we don’st worry if he’s going to catch colds and things but it would be helpful to know that if he gets a cold and if it’s a bad cold he might need to go to hospital, actually that’s not unreasonable information to give a parent.

You touched on information, you’sve talked about your researches and you’sve talked about the information being a little bit drip fed in the hospital, just tell a little bit about how you would have liked the information to have been communicated to you from the hospital?

Luke: I think it’s really difficult, because I completely understand that there are, that the hospitals are in this situation where you are dealing with a vast number of people with huge different levels of educational bases huge different emotional levels and people may or may not want all the information in the world or not want to be overwhelmed our whatever it happens to be. How I would have like to have received information is I would have, I think the leaflet they gave out which is kind of a A4 sheet of hey this is what Hirschsprungs is, what would have been helpful is if you would like to read more go to X website and that be a website which has got really in-depth, detailed information from a whole bunch of sources but that has been looked at and sifted through by a medical professional who’s gone actually yes that’s being replaced by this, you know, and actual good resource centre as opposed to, you know, being left to sift through this swill yourself. But yes I don’st think you want to hand that out to everyone in the leaflet because some people they just won’st want it but I think.

Angie: Having access to it is important and actually if you ask a straight question give a straight answer.

Luke: Give a straight answer yes.