Yes they said well basically they wouldn’st know, didn’st know how bad the situation was until they actually opened him up and looked at it and they said it may, they explained to me how they’sll take out the bit of necrotic gut in there and they’d need to take out the necrotic gut and that they’sll make a stoma on the surface. And I at that stage didn’st have a clue what a stoma was and my mother-in-law knew because she had friends who’sd had bowel cancer and so she explained that they would make a stoma with the two ends and bring them to the surface of his tummy so. She kind of assumed I knew what a stoma was, you know, which I didn’st, I had to ask and that, you know, that was what they’sd do but, you know, they didn’st know how much gut they were going to have to take out and where it would be and I know when I did the consent form you know, the worst case scenario is they would have to take out the whole gut in which case he would need to be intravenously fed for the rest of his life. And so it was a kind of a funny situation because, you know, he is going to die if they don’st go and do the operation and they’sve got to do the operation and do what they need to do and you just have to completely trust the doctors and the surgeons to do what they’sre good at and you kind of hope for the best, that, you know it’s not one of these severe cases.

But yeah when I was in the post-natal ward I sent everyone home and the surgeon came round my bed, pulled the curtains round and I remember his name was [surgeon] he was really nice. And he basically said, Look I’sve got some bad news she, it’s probably one of the most complicated case of gastroschisis I’sve seen and I need to operate on her now,’s and he basically said, I need your consent.s And I was, it was like literally I couldn’st even hear what he was saying and he was trying to draw a diagram for me to explain what was wrong with her but I was, I couldn’st I just couldn’st take it in, couldn’st take it in. And he’s like Can you sign it?’s and I said to him, I said to him Yeah I’sll sign, I’sll sign it,’s I said I haven’st even met her, I haven’st even met her’s and he said, Can you get up to the neo-natal unit?’s and I had blood all over me and everything and I said Yeah,’s I remember being in the lift cos someone looking at me funny and I thought don’st even ask.

And I went into the neo-natal unit and I literally saw her for about 30 seconds they were prepping her for surgery, she was screaming, bowels everywhere they were trying to put them in a bag and she was being, she was ventilated so I literally, that was my, and then she’s gone and I was left there again on my own and that’s when I phoned [husband], I remember going into the corridor and phoning him, having to explain that all over the phone and I didn’st really understand myself and I was like, I don’st really know what’s gone wrong but she’s going into surgery.s And he, the surgeon was saying the hole’s too small that the bowels coming out of so it’s cutting the blood supply, the bowel was dying we need to cut it open now to release all that blood, sign this consent form. Then he was saying to me, There’s also another defect where her bowel is broken in two it’s never actually connected and it’s not going to be as simple case of just putting it back together, it’s probably going to take quite a few months probably over a year and so you’sve got to prepare yourself for being in here for the long haul.s So that’s not what you wanna hear when you’sve just had a baby, and all the way along you’sve been told let’s hope it’s, gonna be a quick put it back in job and you’sll be two or three weeks, you know, so that, I was just like distraught and I was thinking so I couldn’st- so he said probably we can’st even deal with that issue yet, the first issue is to deal with, get this blood flowing back into the bowels.

I think my surgeon probably doesn’st really like me [laughs] I’m one of those mums that asks every question under the sun, will research everything, I don’st like surprises anymore we’sve had too many surprises with [Name] where I haven’st asked the right questions and we’sve just bumbled along, so I like to be prepared. So for closure surgery her surgeon initially thought, he felt she was ready in January but there really wasn’st that different between January and May but for [Name] it was a massive difference. In January I still had a very little baby and she was little with a massive exomphalos* not much space in size in her abdomen and very weak lungs. But he felt that she was stable enough to go ahead but he hadn’st asked anyone else he hadn’st consulted with the respiratory consultant, the cardiologist and he didn’st really like it when I pointed that out. I wanted to look at an option that they use a lot in America with exomphalos babies which is compression bound strength [compression bandages]. So instead of having surgery where you put it all back in in one go and hope it fits and not put a patch on which has all sorts of complications for rejection. You use stretcher bandages and you try very gradually to squeeze it in and he wasn’st having any of it because it hadn’st been, there was no specific, because there are so few babies with it there is no specific research that has been done on it so there was no quantifiable evidence it was just it works. So he, we had a meeting in his office where I said can we and he said no and I said can we and he said no and I said can we and he got cross with me [laughs]. So I went off and I saw all the other professionals involved with [Name] and they said well, We see no reason why not.s He didn’st want to do it because it wasn’st his field of expertise he hadn’st experienced it before and what he felt he did worked and it worked well. But I thought but there’s a non-surgical way I can do this and I’sd like to explore the non-surgical way before I explore the surgical way. So anyway eventually he just said, Well she’s your baby’s [laughs]. So between me and the community nurses and a lot of research and chat with American mums on the Facebook support group we sort of hashed up a bit of a bandage things for [Name] which she wore for a week and threw up constantly and so I’m thinking I wonder she’s throwing up constantly with a tiny little bit of pressure on her abdomen how is she going to cope with all of it one go. So I had this conversation with the surgeon and I had this conversation with the respiratory consultant and the respiratory consultant rang the surgeon and said, Please don’st do it not yet she’s not ready she’s still too fragile and we think there’sll be too much repercussions on her respiratory system,’s so he say Okay fine,’s another medical professional is telling me not to so I’sll listen to them.

* 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 yes he’s, he’s decided just to get better and they said we’sre fine we’sre calling the surgeon team to come, so to come and assess. So that’s the second time we saw Miss [name] and it was a completely different experience. She introduced herself again she said, I don’st know if you remember me and I said, I do remember you I’m here because I was told that your baby is improving and if you can demonstrate that your baby can be like he is today, not more not less just as he is for three days then we can plan surgery for him at the end of the week. And we said deal, that is going to happen and that became our focus we were again very positive, very motivated to try to fight for this we were trying to pump more milk and trying to think positively all the time. So that was Sunday, well that was Saturday and then Sunday was great. Then Monday was day number two officially it was day number two we were looking at [son], he was stable he was transferred now from the high frequency ventilator to the ordinary ventilator, he was waking up so he has these eyes, still well just opening and moving hands, moving toes very small movement but for us it was like this is him, this is him alive. And then on Monday morning we were visiting him and then Miss [name] just came with a piece of paper and said Can you please sign? And I said, Well why do you want me to sign? She said I’m taking your baby tomorrow to surgery and I thought well the deal was three days and this is just day two and she said at the end of the week this is the beginning of the week and she said, Please sign here, your baby is good enough to go to surgery. So yes that was very happy very, very good times. I read the whole document and it was quite shocking because you were actually signing for your baby, on behalf of your baby and then I asked well can you explain what are you going to do in the procedure and now we moved to another phase and she explained now the procedure. Right so I’m going to open here I’m going to use this type of, there will be a scar this is going to be the approximate size of the scar, I will open the tissue I will look what I can find inside I will pull down the bowel then I will assess how much lung is left and if I will need a patch or not and based on that I will decided what to do next if I need to do something to the lung if I need to close the, the hernia to put the patch to accommodate everything. She explained; The heart is going to come naturally to its natural position and it is going to take about an hour. And then he will come back here and then it’s recovery. So she explained the whole thing, it was really explicit and then the next day was surgery. So surgery day was difficult but again we were very positive we didn’st want to be outside the door from theatre we wanted to relax go outside for a walk. It took them longer to prepare, to get ready for theatre, he needed to go from the intensive care unit in maternity unit to all the way across the hospital to the, so I think that was also a, well babies are there if theatre is there and you need to transfer them from A to B I think the layout should be improved in some way. But then we saw all these strong guys coming to, to pick him up and the consultant was there preparing everything, the nurses were there, three nurses the consultant I think, what do you remember who was, the consultant team, but it was the paediatrician team talking to the surgeon team to try to get a, well not a spy but somebody from our team or from the intensive care unit to join the surgery, I didn’st know if it was to help or just as a spectator but it was just in order to keep somebody from the team inside, it was nice, that was very nice.

Clare: No, no I mean he talked about what it was, he talked about, you know, that there were, because, because [son] was a bit older and because of how distended his tummy had been and all the sort of attempts at treatment that had happened along the way with trying to treat the constipation and everything he said that, I remember him saying that the reality was that he wouldn’st really know what he was dealing with until he got in there, literally and so he explained that there were a couple of different options, he explained that actually it might all be over quite quickly if he went in and found that because of the distention that [son] had suffered, that actually part of his gut was so badly stretched and affected that he might have to fit a stoma and would need that to kind of allow the gut to recover as much as it could before then doing the main surgery. So there was an option that this might turn into a two part surgery but either way it was gonna be better than the alternative. And then he went on to say but obviously if, if I can sort to out then I would like to do it in one go because, sort of the less times you do surgery the less you’sre putting the child at risk and so on and, and he explained that he would basically be getting biopsies as he went along, so it would make the surgery quite prolonged but he would, he would apply it with the greatest accuracy and diligence that he possibly could, so he would only remove the bowel that he absolutely had to remove and would leave anything he possibly could that was healthy but until he got in there, other than the initial biopsy for the diagnosis he didn’st really know what the extent of it was going to be until he got in there, and he was very clear about that, that, you know, on the one hand he could be out after, you know, kind of an hour but with a stoma fitted and then another operation or it could be several hours.

So, and he yeah he was, he was very good at kind of explaining that and again I think it just added to the whole, okay, we feel like he’s gonna apply some, some judgement here based on experience, that this isn’st gonna be just someone going in and just, you know, doing a butchering job, so that was good.

James: Yeah very measured, again very proportionate and very considered in how he approached it and I think those are the kind of things that you need at that stage, you need reality, cos you need the big hits, this will happen if you don’st do this, right okay good got that, okay so let’s talk about how we do it and then you, you go through those bits and bitesize chunks and you, again given that measured, that sort of warning that this guy isn’st fly by night he’s gonna makes sure he does this properly.

And these are the things that just you, everyone needs, you know, we’sre exceptionally lucky you know I don’st think everyone’s had the experience, well as we know from that meeting a few weeks ago, not everyone’s had that experience. So I think we were just exceptionally lucky to be geographically where we were, you know, and that’s not right that’s not how it should be, it should be universal in that respect. So yeah God bless him he did a spot on job didn’st he?

Adam: I think we saw the surgeon in the morning of the operation that came round.

Sonya: I don’st think we saw him at all I think we saw, you saw him afterwards.

Adam: Yeah I definitely saw him afterwards but…

Sonya: The anaesthetist, the word I can’st say, came to see us before.

Adam: Oh that’s what I’m thinking of yeah, actually yeah so we didn’st see, yeah you’sre right.

Sonya: We didn’st, I didn’st see the surgeon at all you saw the surgeon, the surgeon came and spoke to you while I was going to get her from recovery.

Adam: So yeah the, I mean they explained the surgery to us and what would happen and it was obviously it was a very simple procedure from their point of view and it is simple and easy. And I don’st think we were overly concerned about the surgery aspect it was much more the general anaesthetic at three weeks and.

Sonya: And actually that’s what they were most worried about.

Adam: Yeah it was and they talked, which is why I think probably why the anaesthetist came to see us instead of the surgeon. And I think in particular as first time parents she seemed tiny and frail and sort of very small to send her off for a general anaesthetic, it felt a big deal wasn’st it.

Sonya: It was yeah. And that’s why we then had to stay in overnight, cos they-

Adam: Yeah.

Sonya: Monitored for apnea.

Adam: That’s afterward

Sonya: And all the concerns were yeah all the concerns were about the effects of the anaesthetic not the surgery.

Adam: But another thing they asked us to consider was well I think they did it in a really good way and in a way I was happy with that the overall I don’st know what her title is but the sort of head paediatrician of the unit, off the entire unit her policy is that if you have a hernia on one side is to open up the other side as well under general anaesthetic to check whether there’s one that side cos the likelihood once you’sve got one one side goes up to the a level that is not insignificant or that you’sve got one, either got one or you could get one.

Sonya: Or the start of one.

Adam: And she said that’s her policy and it was a sort of opt out which we’sre much more in favour of that kind of approach to things because we consider they know best so we were happy for her to do that and also we, the thought of her not doing it and then maybe in three months having to go back under general anaesthetic let’s just make sure it was all done in one.

Sonya: Luckily we did.

Adam: Yeah as she had another one on the other side.

Sonya: And they repaired both sides.

So the surgeon rang me to talk through what they might find you know, what would be, you know, what would be worse what they do about it and so yeah she went into the surgery and what they did find wasn’st so bad for her kind of condition so she could have an extremely short gut, and but luckily for her she had quite a lot of normal intestine under where her blockage was so it wasn’st actually a worst case scenario which was.

So what was her condition?

It was a Digital Atresia, so she had a blockage in the very top of the, so really quite high up where the small intestine starts. yeah.

And so that surgery was to unblock that in the first instance?

Yeah so it was to cut, cut that out because of course you can’st eat anything if it can’st go down and then because it’s quite make the surgery because of where the blockage is you could have quite a large, it can be quite stretched where the blockage was and then you’sve got your normal intestine underneath, so joining the two bits back together once you cut the bad bit out can be quite difficult. So they gave her a stoma and then she would have to have surgery again to close that stoma and re-join her intestines at a later date.

And was that, that sounds like quite a major operation.

Yeah.

For a 2 day old baby, that’s only 34 hours old. And had you spoken to the surgeon before?

Yeah.

And tell me again what did him sort of outline, I guess he didn’st know what they were gonna find at that point.

So they were pretty sure there was a blockage because they had given her an x-ray and yeah, weren’st sure what they were gonna find and I’m pretty sure they explained to me that she might have a stoma once she came out but it was, it was pretty much we’sll just have to wait and see and go and see what we can find. but they were quite pleased so when, when they rang me after the surgery they were, you know, they were quite happy because there was quite a lot of normal intestine underneath her blockage so it wasn’st the worst, worst thing, not the worst everything can be dealt with but it wasn’st you know, a really bad, bad case.

Yeah five days old that was quite, that was one thing that was, that was [cough and laughing] that was one thing that I did find quite distressing. The, one of the things they came up with anaesthetic papers at that point me and Simon wasn’st married and you went to sign the forms didn’st you and Simon wasn’st allowed to sign the forms because of us not being married. So that was, I think that was again where the guilt came in because it was me that signed those forms and the surgery even though it went well his liver kept on kinking every time they was trying to get his liver back in and we nearly lost him on the table very, very, very nearly and that guilt then came back with a vengeance because it was I who signed that paper, you know what I mean and I felt that it was all on my head. And I know that’s probably the wrong way to think but I think when you’sre going through it everything runs through your head and, you know, the taking him down to theatre, the waiting and you make sure that your mum had had a hold of him, hadn’st her, my mum, so see that everybody had had a cuddle with see so because again we didn’st know what the outcome was gonna be, you know, and the consultant was very open and honest, you know, he says I’sve done it, you know, a few times and some we’sve got through and some we haven’st, he said it’s just, it all depends on how strong he is. You know, and, we was told from the offset that this, this operation was a big one and he was in theatre for about five hours so it was quite a, quite a lengthy process as well.

So she went for surgery and I think it was the 16th of October, but maybe you see I’m confusing the dates when she had her line in when she had, but anyway it was about a month or so after they went back in and that’s where I really remember her sort of big op, you know, that was, you know when we talk about surgery, you know, sending your child to surgery and I think that was the, not the first but that was a really big op. I remember the night before we both were staying in the hospital they’sd allowed us both to stay because there was a room down at the end, like the oxygen wasn’st working properly and they said they couldn’st put a patient in there that kind of thing. So we had that as a sort of spare room and [husband] and I were kind of taking it in turns to sleep beside [daughter] and I just remember being in the room, neither of us hardly slept at all obviously and just crying and thinking someone is literally going to put a scalpel in my baby, you know, they’sre going to cut my baby and this was after she’sd had surgery, obviously two major laparotomies already and a and a line insertion so it wasn’st her first surgery by any stretch but it was perhaps the first one I’sd had the chance to almost prepare myself for properly, you know, like really kind of. And also obviously we knew that partly her future was hanging in the balance of what they discovered and what they could do you know, in the optimum outcomes that they’sd save some, or all of this bowel and yet we knew that was looking unlikely because of the, the dye study and, you know. So but I do, I, I can really remember plainly, you know, at 2:00 am when things are always worse aren’st they but, you know, really actually imagining sort of the scalpel going into her skin and thinking they’sre going to cut my baby open, you know. And there were times in that time when, you know, I almost wanted to just detach everything, all of the tubes and everything and just take her away, you know, and I think, I don’st know, but I think a lot of parents in hospital probably get that feeling sometimes, it just seems to be so painful and you’sre waiting so long for everything, you know.

I think because you’sre giving your baby, you’sve given your baby, you’sre giving your baby to people who are gonna cut into him and remove something from him, you know, you don’st expect that when you’sre, you know, when parents come out with this gorgeous new born baby and, you know, tired and stuff like that and, you know, that’s kind of like the norm, coming out with your baby who’s got a scar across his tummy, you know, and he’s got a scar here and, you know, and it’s quite hard really because, I mean I’m not bothered because, because it’s, I think that’s a war wound of how amazing my son’s been but you don’st want your baby to have to go through that. You know, but you know, that’s what it’s took to get Bobby where he is now but it’s hard because you’sre giving your baby to somebody who’s gonna, who’s gonna do something that’s quite, I mean he had major surgery and, you know, we could have lost him in that, you know, cos it could have been too much for him, it could have, you know, he had to be anaesthetic which is quite, quite dangerous in itself for a neo-nate really so, you know, yeah it was quite, quite hard really.