The first night I had to go home I found really difficult because I just didn’st want to leave him he was still in intensive care, he was still, you just, you want to be there every moment every day because you want to know exactly what’s happening and I hated coming in and stuff had happened I used to feel really disconcerted for the first kind of well what’s gone there and his dressing looked different and you’sve done this and he’s wearing this and he’s well he wasn’st wearing anything then was he cos he didn’st have any clothes on but it, you know, it’s, he looked different something, there was a new tube or there was a new dressing on or there was a new something and you hadn’st been there to see it, I hated that I really hated that.

Michelle: So we, you know, we talked through what had gone on through the surgery and how the closure had gone and you know, they were very pleased with the outcome so far said that they’sd managed to get everything back in that, you know, he was being ventilated so we were warned numerous times actually before he went into surgery that it was, he, it was going to be quite shocking when he first come out because he’sd a lot more morphine that he’sd been on already and would be ventilated and probably quite swollen and he was, but like I said we were prepared for that.

Harry: Still, still not very nice, eyes lolling in his head and.

Michelle: And he was really puffy wasn’st he?

Harry: Yeah and has got this big ventilator stuck in his mouth.

Michelle: Yeah.

Harry: That you can’st hear him you can’st hear him cry.

Michelle: He can’st cry, he can’st.

Harry: He can’st move his head so he looks, he looks very uncomfortable.

Michelle: Yeah they tried to, cos they said they want to avoid paralysing the body from the neck down so what they did kind of help preserve the stitches and help preserve some of the work, the good work that they’sd just spent five hours doing so they either go down the routes of lots and lots of morphine, which is what they did with him in the end.

Harry: To stop him moving around.

Michelle: To try and keep him so sedated that actually you don’st really, you can’st move that much or they have to go through drugs that basically paralyse the body which is slightly more severe so we didn’st really want to go down that route. So and they’sd done a very good closure and we’sre hoping that it would kind of heal in the best possible way and look a bit like a belly button but it, it wasn’st to be. So then that, that was all good wasn’st it, he was ventilated for a few days and the wound was redressed and then sadly he’sd got an infection in his wound and so he got e-coli which destroyed a lot of the surrounding skin and so his wound was very, very poorly for quite some time.

Michelle: Actually the transition to home we kind of gloss over was they were fantastic they have a couple of rooms that you can room in with your baby before you go home because actually it is really daunting despite having two other children we’sve never, we’sd never spent a night with him were he’s not in a box being supported by 24/7 nurses so.

Harry: That’s exactly it, you kind of get used to having that, I mean, the biggest safety blanket you can possibly imagine everywhere. So you’sre there you’sre doing the kind of tying up the nappies and kind of pressing a button to turn the alarm off if someone tells you to but actually you don’st have any responsibility.

Michelle: You’sre told when to feed and you’sre, if you have a question about why someone’s crying they’sre immediately there to help you so, you know, you don’st you learn not to think for yourself because all you are doing is supporting them rather than you having sole care of your child so you don’st actually feel, you’sre infantilised you don’st feel equipped to deal with that. So actually it was really helpful to have that night where they’sre just outside the door and you can, it’s quite odd isn’st it to think, you know, they transfer them to a separate little crib that you can kind of wheel into a room, feels quite strange when you’sre first in charge of them doesn’st it, quite scary.

Harry: And then you.

Michelle: Quite scary.

Harry: Yeah you just take him home.

Michelle: And then you take him home [laughs].

Must be terrifying [laugh].

Michelle: So it I, you know, it is quite scary but actually they, they very much encourage you as you go through, once you get out of ITU and you get into high dependency and certainly in SCBU they, you’sre totally encouraged to do as much care for your baby as you can, it’s your baby they’sre there to support you and to medically jump in if need be but don’st expect that they’sre there to feed and care for your baby because that’s your job. So, you know, they were very good and clear about that which was really helpful actually because it gives you the confidence to start taking over and to start trying to build, I mean I felt like I was kind of bonding with him when he was in there but you can only do it to a certain extent because they’sre attached to lots of wires and you need help to come and take them out and put them back in and you never have skin to skin contact with them because there’s too much going on. So actually you can only do that once you get home, I’sd never breastfed him until he came home so and by that stage he was two months old so it, you do have a big gap and it feels like everything is on hold until that point at which you bring him home. And it’s kind of a, you have a new born baby that is actually two months old so it’s quite an odd psychological thing to get your head around where you’sre dealing with someone who developmentally is older than their years if you see what I mean, you know. So you’sre starting from slightly differ point, you kind of hit pause for a couple of months.

Harry: I think that’s the most important thing you can do actually as a parent is just make sure that you’sre.

Michelle: You want to know what the plan is, so I always wanted to be there for ward rounds in the morning to make sure that you’sve met the night time nurse and spent a bit of time with them before you go home in the evenings so you knew what the plan was in the evening, you knew what the plan was during the day and that you could, you know, be around for all the stuff that you needed to be around for. And the good thing being they were always there 24/7 so even once you have gone home I used to ring up sometimes at 3:00 in the morning if I was pumping milk you get up and I’sd ring from the other room just to see how he was. And, you know, has he done a poo yet has he done this how, is he settled that’s the bit we wanted to know.

Does someone pick up the phone and talk to you?

Michelle: They always, always pick up the phone, they would always say I’sll put you onto the nurse that’s looking after your baby or, you know, tell you what his temperature was tell you what his infection markers were, tell you, you know, how he was coping with whatever it was that he was dealing with at that stage as there were a few kind of ups and downs. So you knew you were only ever at the end of the phone from leaving, to be there, you know. So that was a huge comfort actually and to ring in the morning so you don’st have a terrifically stressful journey in, you know what to expect.

Harry: You get there at 9 o’s clock or.

Michelle: 8 o’s clock, you know what to expect when you get there for the rounds because you’sve already spoken to them you know what’s happening you’sre informed you can either rush yourself out the door or be slightly more kind of take a breath before you leave, which is helpful actually really helpful.

Harry: Yeah.

Michelle: And because you’sve been there quite a long time you’sre actually everyone pretty much had looked after him by the time we left, they all kind of knew, they knew you which makes a big difference. So you know, you certainly had your favourites, I had my favourites where you feel more or less confident leaving in the evening knowing that they were with such and such nurse that you had the upmost faith in. So yeah it makes, it makes a difference those relationships definitely.

Michelle: But then, you know, you were spending 12 hours a day at the hospital and actually you get so used to somewhere it was almost like going into work, sort of, saying hello to people on reception and saying hello to all the team you know, it was kind of this is what you do.

Harry: We did develop quite strong relationships with the medical team and other parents as well.

Michelle: And other parents and you just get into a routine that’s your, that’s your kind of coping you take each day as it comes and you, you’sre in your routine for that day. And to then have been out for four or five days and the went back with him for a check-up and it was really startling to me how long it felt that I’sd been out, it was really strange to go back, it just felt like such a distant memory.

Harry: [Mmm]

Michelle: Which was very, very odd. I think probably because he was with me so I was kind of, you know, I was coming in with him rather than coming in alone and putting my coat in the cloakroom and scrubbing up and stepping in. So so yeah for now he’s still has his paediatric reviews he’s still very small but he is putting on weight really well.

Did you find that quite hard finding the balance, well you said you stayed in the first week then actually finding the balance between coming home-

Michelle: The first night I had to go home I found really difficult because I just didn’st want to leave him he was still in intensive care, he was still, you just, you want to be there every moment every day because you want to know exactly what’s happening and I hated coming in and stuff had happened I used to feel really disconcerted for the first kind of well what’s gone there and his dressing looked different and, and you’sve done this and he’s wearing this and he’s well he wasn’st wearing anything then was he cos he didn’st have any clothes on but it, you know, it’s, he looked different something, there was a new tube or there was a new dressing on or there was a new something and you hadn’st been there to see it, I hated that I really hated that.

Harry: And you can’st, it’s difficult to try and schedule, you just have to be there the whole time because he.

Michelle: They work on hospital time which was loose at best.

Harry: The teams come round at any time, and usually it all happens when you’sve popped out to get a milk.

Michelle: Yeah you pop to get a coffee and you’sre whole world falls apart in that space of ten minutes so you do end up.

Harry: Lingering.

Michelle: Just being there you’sve gotta just be there the whole time cos you don’st know what you’sre going to miss. And they obviously need to get on and do stuff when they need to get on and do stuff.

Harry: The ITU room, so there’s ten incubators in that room he was in it’s quite a stressful room there’s lots of things going on, there’s lots of very ill babies who are constantly having problems and there’s alarms going off the whole time, either rightly or wrongly so there’s a constant hum of machine noise and, you know, sometimes stressed parents and stressed medical staff as well so it’s quite a, it’s quite an intense place to be. So moving on he was on his back intestines in a bag hanging from the top of the incubator. So what they do is they, they want to try and do the closure as quickly as possible because the longer it’s outside the more risk there is of infection. So they encourage it, so obviously gravity works, the swelling reduces naturally and the bowel descends into the abdomen to a certain extent but they also on the, imagine the bag above his abdomen they put little ties on so you can see how far every day, you can see it’s like a reverse growth chart seeing how the abdomen is descending and then they make a call about feeling the pressure on, pressure on the abdomen.

Michelle: Because the abdomen hasn’st grown big enough to accept the bowel basically so.

Harry: Yeah I mean its physics really.

Michelle: It puts a lot of pressure on the other organs.

Harry: There isn’st enough space. So yeah it exerts a lot of pressure. As Michelle says once it’s in it’s going to put pressure on the liver, the lungs all the other, all the other major organs in the abdomen so you have to be sure that there’s not, A there’s enough space to shove it in and sew it up.

I really didn’st want to be transferred and we were very fortunate because the neo-natal surgical team there actually specialise in bowel surgery and so for us it was not only the hospital we were going to have the baby in anyway but it was actually the best place we could have been in the country. So they had another baby there who had been transferred three weeks earlier from [city in Wales] so she’sd had the baby in [city in Wales] with gastroschisis* and had been transferred to [hospital name] a and was subsequently were living in the patient hotel, you know, for weeks and weeks and weeks whilst their baby had the specialist care that it needed before it could then go back to [city in Wales]. So we were incredibly fortunate, incredibly fortunate because it was our local hospital and so, you know, for us it was the best place we could possibly have been for him and we had an amazing team, absolutely amazing team.

* 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.

Harry: 20 minutes up until point of delivery it would have been exactly the same process.

Michelle: Any other birth, any other induction.

Harry: As anybody else who was being induced.

Michelle: Absolutely.

Harry: Exactly the same although.

Michelle: Which I really did appreciate actually.

Harry: I suppose the one, the one variant was the midwife was a little bit inexperienced so she got a little bit nervous about breaking, breaking waters.

Michelle: Yeah we had to get other people, other people coming in and do those bits and pieces.

Harry: But apart from that, and then just as you go contraction getting bigger and all the rest of it the senior midwife who was giving you strict orders, she was not very good at following orders-

Michelle: Yeah she came in, she was great.

Harry: And actually got a bit of focus going and they all came in.

Michelle: They did file in didn’st they. They were all waiting outside the door.

Harry: Most discrete I think there was four of them, didn’st know how many of them they just came in and were kind of doing whatever they were doing, kind of noise going on the usual kind of amazing experience and they just filed in and they just stood in the corner faced, faced the

Michelle: Prepared their incubators, prepared their scrubs who were getting ready.

Harry: Faced the wall and it was, you wouldn’st have noticed they were there at all.

Harry: We had a, she was one of those midwives that, I don’st know how long she’sd, I think thirty plus years, no-one tells her what to do, they are the head of the unit. Mummy’s been promised a cuddle.

Michelle: At which they looked vaguely horrified cos obviously he’s there with his organs hanging out and I had been promised a cuddle so they kind of wrapped him up very quickly and I must have had about a three second cuddle.

Harry: Yeah, but what they did they.

Michelle: It was hard, you know he’s wrapped in cling film so.

Harry: Yes so they, they took him over to the corner.

Michelle: Cling film and a towel so I like, I didn’st see anything I could see his head.

Harry: And what they did they just wrapped the, his abdomen with cling film just from Tesco’s nothing, nothing particularly flash about it in order to obviously manage, manage the positioning as well as retain the heat. Quick cuddle and the rest of it and then out the doors.

Michelle: Straight through to the incubator.

Michelle: And so, you know it was totally you know, it was just a ticking the box it was a 12 week scan really, we knew it was all fine, it was you know, I’sd already told the other children that they were going to have a new baby and yeah maybe not have done that if we’sd had known I suppose quite so early. Anyway. So yes we went expecting it to be incredibly routine and actually it was not incredibly routine, well it was for a while wasn’st it, so it was, she was very jolly and it was very…

Harry: All the main measurements were fine.

Michelle: It was very…

Harry: But she said those words that you kind of feel the blood drain from your body which is, cos we were joking round with her saying so, you know, just joking around.

Michelle: She was lovely. And she held my hand and it all went quiet.

Harry: Yes she said, I’sve got to burst your bubble’s and you think Shit now what’s gonna happen what’s she about to tell us.s And then she just told us what the situation was and I kind of understood what she was saying, but at that point you don’st really know what it means really well is this a serious thing is it a routine thing how common is it, all those kind of things immediately.

Michelle: And you could see it very clearly on the scan actually you could see his bowel outside of his body and you could, you know, I’m not saying I would have picked up on it had there not been a stenographer so I don’st really know what I’m looking at, it’s all just a blob. But actually when she pointed it out it was really obvious so his [bowel] was out kind of from, from the get go. And obviously we had, I’sd never heard of the condition before I had never experienced anyone who had had it, who had talked about it despite having had two children before and subsequently knowing quite a lot of people who had had children. Just never come across it at all.

Harry: No.

Michelle: And then the rest of the scan was fairly normal it was kind of you know, went through the final bits of it went off to do blood tests and all the usual bits and pieces but we had to come back the next day to see someone in the high risk team then to kind of re-scan and to talk through what the implications were of what they’sd found on that day. So we obviously had a fairly torrid night [Laugh].

Harry: Yeah at that point where they ask you that question which we weren’st prepared for.

Michelle: No the next day they asked.

Harry: Yeah the next day.

Michelle: The next day.

Harry: Do you want to terminate and it was kind of well first we weren’st expecting the question, secondly, don’st feel as though I’sve got nearly enough information to be able to make such a significant decision and I think luckily for the condition that it was, there was a very easy decision to make which was obviously no we don’st but I think if it had been a bit more kind of marginal or it had been something that was going to impact his life for the rest of his life.

Michelle: Well the longer term impact that we were interested because we fairly fully know but at the time from what they did know it seemed as though it would be fairly, there will be hernia’s there will be things that are completely repairable and wouldn’st necessarily have a longer term impact on quality of life.

Harry: Yeah

Michelle: And also with two other children to consider that’s an important factor for us. So yeah so we had a night of not wanting to look stuff up but wanting to, needing to look stuff up, some things up because we didn’st really know much about the condition and what it meant or what it was or what the rates of success were from surgery or any of those things so we wrote a long list of questions and took those along with us the next day and met someone in the high risk team who scanned again and was very, very good actually at answering all of our questions setting our mind at rest and being very honest equally, in equal measure when she needed to be. And actually she was great wasn’st she?

Harry: Yes

Was she a stenographer, the second day, or was she-

Michelle: She no she was actually a consultant and not the head of the high risk team who subsequently then took care of me through my through my pregnancy, she worked for him so she had another sonographer with her in the room but just answered, I had lots of questions about what it meant, what it was going to mean for the pregnancy what the long term effects were going to be what, you know, what risks there were or what the worst case scenario was.

Harry: That’s the difficulty of it I suppose is you want to kind of a weighted probability of what was going to happen.

Michelle: Is it going to be okay, you know.

Harry: Almost sorts of questions they can’st really answer because they don’st really know.

Michelle: No and it’s, and at every stage depending on what happens obviously it sends you off in a completely different direction with a different set of risk factors so there is no standard answer, there is no standard outcome so we were told that, you know, it would mean a hospital stay of anywhere from a few months up to a year.

Harry: Not at that stage, though.

Michelle: A huge range, we weren’st told that then but we knew that later.

Harry: Yeah.

Michelle: So, you know, a huge range of outcomes but yes were fundamentally asked if we wanted to continue or not.

Harry: Well I think the decision was quite easy actually to do that.

Michelle: Yes just unexpected, wasn’st expecting the question.

And was there as sense of how quickly they needed an answer, was it sort of go away and think about it for a few weeks or?

Harry: Well I think she wanted to, we didn’st actually we didn’st answer.

Michelle: We didn’st answer I was quite taken a back.

Harry: I got the impression they wanted one.

Michelle: Really wasn’st expecting it.

Harry: Immediately but, I wasn’st impressed.

Michelle: She was kind of Well I’sve answered your questions now what do you think?

Harry: Yeah at that point where they ask you that question which we weren’st prepared for.

Michelle: No the next day they asked.

Harry: Yeah the next day.

Michelle: The next day.

Harry: Do you want to terminate and it was kind of well first we weren’st expecting the question, secondly, don’st feel as though I’sve got nearly enough information to be able to make such a significant decision and I think luckily for the condition that it was, there was a very easy decision to make which was obviously no we don’st but I think if it had been a bit more kind of marginal or it had been something that was going to impact his life for the rest of his life.

Michelle: Well the longer term impact that we were interested because we fairly fully know but at the time from what they did know it seemed as though it would be fairly, there will be hernia’s there will be things that are completely reparable and wouldn’st necessarily have a, a longer term impact on quality of life.

Harry: Yeah

Michelle: And also with two other children to consider that’s an important factor for us. So yeah so we had a night of not wanting to look stuff up but wanting to, needing to look stuff up, some things up because we didn’st really know much about the condition and what it meant or what it was or what the rates of success were from surgery or any of those things so we wrote a lot of questions and took those along with us the next day and met someone in the high risk team who scanned again and was very, very good actually at answering all of our questions setting our mind at rest and being very honest equally, in equal measure when she needed to be. And actually she was great wasn’st she?

Harry: Yes

Was she a stenographer, the second day, or was she-

Michelle: She no she was actually a consultant and not the head of the high risk team who subsequently then took care of me through my through my pregnancy, she worked for him so she had another sonographer with her in the room but just answered, I had lots of questions about what it meant, what it was going to mean for the pregnancy what the long term effects were going to be what, you know, what risks there were or what the worst case scenario was.

Harry: That’s the difficulty of it I suppose is you want to kind of a weighted probability of what was going to happen.

Michelle: Is it going to be okay, you know,

Harry: Almost sorts of questions they can’st really answer because they don’st really know.

Michelle: No and it’s, and at every stage depending on what happens obviously it sends you off in a completely different direction with a different set of risk factors so there is no standard answer, there is no standard outcome so we were told that, you know, it would mean a hospital stay of anywhere from a few months up to a year.

Harry: Not at that stage, though

Michelle: A huge range, we weren’st told that then but we knew that later.

Harry: Yeah.

Michelle: So, you know, a huge range of outcomes but yes were fundamentally asked if we wanted to continue or not.

Harry: Well I think the decision was, was quite easy actually to do that.

Michelle: Yes just unexpected, wasn’st expecting the question.

*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.

Michelle: A lot of the time it’s around

Harry: I thought we were pretty well prepped through the process.

Michelle: Yeah

Harry: And with every eventuality and we did actually meet, I can’st remember at what time the neo-natal team.

Michelle: That was just after 20 weeks because basically after that 12 week and the next day you go back and meet the high risk team then from then until 20 weeks you’sre pretty much left alone, so that’s it you’sre just ordinary pregnancy because there’s nothing they can do until they then look again at 20 weeks and then from 20 weeks onwards you then have very frequent scans and the week after the 20 weeks we met the team that were going to be dealing with dealing with the baby. So we met the surgeon, the head of surgical unit who actually ended up being our surgeon, was fantastic, so we met the neonatologist we met the surgical nurse and, you know, all had a meeting to discuss the various options that there may be during the surgery, there are a couple of different ways that they may put the bowel back in depending on the condition of it.

Harry: Explained the process.

Michelle: Talked through the process we toured the NICU* which sounds fairly grim but actually was really helpful because we knew then what to expect and we went into intensive care and we looked at some of the other, you know we got to see some of the nurses and got to see some of the set up. Which actually means that it’s a little bit familiar and actually the set up in the hospital that we were in was fantastic because the, it meant that if we chose to have the baby there the labour ward has double doors straight into intensive care. So we had the baby and literally he was pushed straight through, so it was good.

Harry: That discussion with the high risk team in the neo-natal surgery team was very structured, very calm they explained the process, the birth process what was probable thereafter so the facts and simple stuff like you assume, everyone assumes that it’s not that you can’st have a natural birth because you, well for obvious reasons. But that’s not the case in fact it’s perfectly normal to have a, have a natural birth and that was explained which was a relief.

* 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.