Antonio: The first, the first well, they say, the first stitches were done, we knew that they needed to be redone but then they took that gap in time, of stability time let’s call it as an advantage to or an opportunity to, to just go and tell us or give us the news. and that was the hardest part because we saw the paediatrician coming in and I was smiling right I thought oh yes, so finally we will have the baby, we will be able to go together and have him with us. But I saw the paediatrician and the nurses, nurse one, nurse two, nurse three and then eventually fifteen people inside the room being the last three.

Alix: I don’st know it was fifteen there was a lot of people.

Antonio: Being the last three [sister], [father in law] and [mother in law] which was our family. So that didn’st look good at all. So we thought this is going to be bad news and we were expecting the worst news. But then he started and he started with a medical language saying your baby was born with a congenital condition and the diagnosis is apart from the meconium that you already know we checked him with the x-rays we took that he has congenital diaphragmatic hernia. It was difficult to assimilate because we didn’st really understand what, what a congenital diaphragmatic hernia was. But then he continued his explanation immediately by describing the condition physically he said this is a hole between your

Alix:..a hole in his diaphragm.

Antonio: Yes this is a hole in your diaphragm which is the muscle that separates your bowel cavity form your thorax right so that means that because you’re not using, he was very descriptive and it was really good I really, really liked what [rustle] did for regarding the diagnosis trying to put that clinical name which I suppose he needs to do into very simple words that we could understand. He said, The hole it’s in by the muscle but because you’re not using your lungs when you’sre inside of the womb then all the bowel will try to occupy that space and because the first thing that we do when we are born is to try to inflate our lungs or to put all the air inside our lungs [son] tried to do that. But then he couldn’st because it was the volume was occupied by the bowel. So that’s why he couldn’t breathe even by having one lung that, you know, the compensation between the airflows and so on it was difficult so it was also affected by the meconium so that’s why we needed to intubate and try to help him. So we were shocked right so we, we couldn’st really accept what was going on.

Alix: I think it was just disbelief.

Antonio: Yes and when, the first reaction was probably this is not us, this couldn’st be us because everything was fine so what went wrong and so, so yes we just looked at each other and said well this, this is not happening. And the next thought was then what was going to happen or where is [son] why isn’st he with us having this this discussion? Or is he still here with us at some point I was thinking probably he is not with us anymore. But then he said, Your baby is stable. So he started to give now after the diagnosis the current status of the baby, He’s stable. He needs surgery, yes and that’s the first time when we heard the word surgery which was quite scary right because again you just think about this fragile small things and think, this is, this is difficult for an adult it will be worse for our, for our baby. So he said, He needs surgery and he needs surgery as soon as possible. But we don’st have the technical skills or the resources to do to take him to theatre here in [local town]. So we need to find the place, a cot for him somewhere else. So again very confusing for us, parents for the first time, first time with the NHS as well. So we are, we are healthy people so we haven’st been in hospital before so it was quite disturbing to try to understand. So do we need to get into our car somewhere else or is the hospital going to help with these, is it going to be expensive is it going to be. So it was just disturbance in the whole system and a lot of information to assimilate. But then he said, I will come back to you in a couple of hours. He was also very precise about the information in terms of timing and when it was going to happen next and We’sll come back with you because I need to consult with other teams and where is the place for, for your baby.

So to start with perfect, she was my, she was my earliest baby and yet she was, and she weighed the most and it all seemed so perfect and then within about three hours of her being born she I was breastfeeding her and she sort of vomited a sort of slightly discoloured flem and it was sort of a brownish colour and because they’sd picked up on her 20 week scan that she had some sort of prominent loops in her intestine they thought there might be something, they thought it probably wasn’st so then we were just gonna see if she did a normal poo when she was born and take it from there they weren’st concerned, overly concerned. So when she did this sort of stained mucus vomit on me I knew straight away that that wasn’st normal and so I got the midwife in and about ten or fifteen minutes later she started vomiting bilious green, horrendously high amount and she didn’st stop, so she got taken away straight away as soon as she stated doing that. But completely stable so that was her, you know, they weren’st they knew it was an emergency but it wasn’st, you know, all the, her heart everything was fine and her temperature everything, she was really quite stable, she was just really sick [laughs].

Really it was kind of unclear and I didn’st really know how ill he was either I think I was quite ill as well, I realise I was on a lot of pain relief as well so I didn’st really know what was going on. So and obviously, you know, when they’sre that little and at that stage everything, things change kind of, changed quite quickly. So what had happened, so he was born on the Sunday, transferred on the Sunday night, Monday, you know, he was just continuing to be watched in the neo-natal intensive care and they were, you know, my husband was taking my colostrum over to the unit and they were trying to give him my colostrum and he was just continuing to vomit and not really, not really going forward or backwards just kind of, you know, yes just kind of on a plateau really. So they contacted [teaching hospital name] because [teaching hospital name]’s neo-natal surgery centre for North London and they thought it might have been a surgical problem because, you know, the stomach was getting just kind of more swollen and he was vomiting and clearly I guess retrospectively the concern was that you know, you’sre worst case and you don’st want to get into a situation where there bowels going to perforate so if there was a problem with the bowel they needed to identify it. So they sent x-rays down to [teaching hospital name] and [teaching hospital name] said bring him down here. So he got transferred in the baby ambulance on the Tuesday with my husband and then so Tuesday afternoon he got transferred down and he was reviewed almost immediately by, by the surgeons down there by obviously I wasn’st there but I heard about it afterwards by Prof [surgeon name]. And he kind of examined him on the Tuesday night and then examined him again on the Wednesday morning and what he said was, to me was on the Wednesday morning the stomach had become more swollen and also more tender kind of as they touched, touched it [son] was becoming more sensitive. So they just decided it was almost exploratory that they’sd have to go in and operate on him to just see what was, if there was a physical blockage or you know, what it was. So they decided they were going to operate on him then on the Wednesday and fortunately I got discharged from [hospital name] so I was able to come down and see him before the went in for surgery. So he went in for surgery on the Wednesday afternoon and my husband did all the consents and things like that, I hadn’st really even had the conversations with the surgeon or the neotologist because I wasn’st around which I guess is one of those strange things about when it happens so immediately after the birth.

No we were told that there was no physical blockage we were told that there was a bit of the bowel that looks dodgy that had been removed. And we were told that the, you know, they’sd taken biopsies and we were told it could be things like Hirschsprung* so that was a possibility, a possibility at that point in time. And also, and they also did say that they were doing more detailed than normal tests for things like cystic fibrosis as well so, you know, we weren’st able to, we weren’st, nothing was ruled out and we were kind of a couple of things were kind of introduced as potentially what the issue was.

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling (pooing) normally.

[They really didn’t know which is fair enough they genuinely didn’st know what it was.] There were a lot of adhesions on the bowels so they believed that he might have had some infection initially after birth which caused the damage to the bowel so that’s their thinking so. I think they, I think that was, that was something I said discussed a lot with the stoma nurse at the time, is I don’st think we’sll ever know what went wrong and I think sometimes, with, and maybe, maybe that’s more prevalent with neo-natal, is things are working and just be glad they’sre working and we ruled out all, and I think that was something that I think only retrospectively I realised that when the biopsies came back and everything was negative I was like yes so, so what, exactly you still, this still doesn’st give me an answer, what I didn’st realise was that was a cause to celebrate because that would have been a kind of much darker outcome.

Yes.

But actually the fact that they were all negative so yes maybe something of it in the future one would be able to diagnose but the fact that we’sre ruling out so many really difficult illnesses to deal with was really good news and if we don’st know exactly what was wrong then that’s okay.