Alix & Antonio

Brief Outline: Alix was expecting her first child. He was born after a very long labour at 40+ weeks. It was discovered that he had a congenital diaphragmatic hernia for which he needed surgery.

Background: Alix is aged 33 and a national account manager. Antonio is aged 35. They are married with one son. She is from Northern Ireland.

More about me...

Alix was pregnant with her first child. She had an uneventful pregnancy and went into labour at 40 weeks. She had a very long labour and when her son was finally born, he was covered in meconium. A resuscitation team examined him and took him away for tests in the neonatal intensive care unit (NICU)*. Shortly after he was born, when Alix had recovered somewhat, she and her husband were visited by a large medical team, including the pediatrician who told them that their son had a congenital diaphragmatic hernia* and would need to have surgery. As he had been born in a general district hospital, he needed to be transferred to another hospital that had a specialist team of pediatric surgeons. 

Once in the specialist paediatric surgical centre, the baby was cared for in NICU until he was stable enough to undergo surgery. This took over 10 days during which time he was very unwell. But eventually his condition stabilised and he was able to undergo the surgery he needed to repair the hole in his diaphragm. After a few days of recovery, he was transferred back to the general district hospital where he was born, and then finally home. At the time of the interview, he was 9 months old and progressing well. 

* 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.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Alix and Antonio’s son was diagnosed with Congenital Diaphragmatic Hernia (CDH) at birth. It was scary and overwhelming to hear the news of his condition and be told that he was going to be sent to another hospital.

Antonio: Yes and when, the first reaction was probably this is not us, this couldn’t 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’t he with us having 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 [the doctor] 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’t 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’t 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 [the doctor] 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’ll come back with you because I need to consult with other teams and where is the place for your baby”. 

There was four options. That was probably already like 7.00 p.m. And then it probably took him like another hour to confirm that [city] was going to be the place for [son] to go and then they started to help a lot with the organising they, we need to transfer Alix as well as a patient and don’t worry about [son] there is going to be a team of [city], from [city] coming to pick him up in a transporter, we will…So lots of information was shared at least to me and then I was trying to pass that to Alix who was still with all this gas and air and [laughter] looking at the elephants flying around her head. Yes so lots of information sharing so that we were able to see [son] so we took Alix on the bed still to go and see [son] and then and with the grandparents and [sister] as well. and so again very good empathy I suppose from the, from the team considering that even if it was after hours and not visiting time they let all the family to go and see [son].

For Alix and Antonio it was confusing and scary to hear such bad news. The doctor was very precise about what would happen next, and went to try and find a hospital they could send their baby to.

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’t 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’t 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’t 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’re 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’t 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’t 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’t 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’t 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’t 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’t 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’ll come back with you because I need to consult with other teams and where is the place for, for your baby”.

Alix and Antonio were stunned to be watching an emergency playing out in front of them. It was not the script they had planned.

Antonio: Right, which probably I was lost in translation I didn’t understand what was going on but I saw [mother-in-law]’s reaction just leaving the room and shouting crash team please come. But then because I was helping Alix coming off the pool I had the, well the whole stage in front of me and I saw just that little head coming out was all covered in very black or creamy consistency, I don’t know it was just all, his face swollen.

Alix: Swollen.

Antonio: Swollen and covering this liquid. But then when they said meconium because I heard one of the nurses saying he’s covered in meconium as the follow…. following phrase from crash team please come in. I thought no this is just meconium because we had been in the NCT classes and we knew those things could and I know that it’s a normal condition and that will not require much intervention. So I was, I was quite relaxed after I heard just the meconium phrase but again we were not listening a cry yet. So I came closer to the baby because our plan was that the baby was going to come out and I was going to help cut the cord and so on but then the next thing that I saw.

Alix:…and hold him for a while, so connected… 

Antonio: But then the next thing that I saw was a group of probably two or three people coming into that place and then probably the next contraction came and the baby just, plop, [slap] went down there on the bed and I saw all the blood and it was just a face covered in meconium but the rest of the body was like covered in butter and then all these team that came closer just started to follow their procedures and cut the cord and not even asking a question, not even asking for who are you, nothing to me just did what they needed to do. And took [son] to the well I don’t know this is a small unit that they, by good luck it was just outside the room where we were so it was quite easy to bring that. But by that time it wasn’t only the midwives and these other 3 nurses it was probably a team of eight or ten people inside the room. So we were quite shocked we didn’t understand what was going on.

Alix: I didn’t, again I didn’t understand anything because in the room, you know, the pool was in the main bit of the room, the bed was at the side, I was knelt, because I was now in the back of it I was facing into the corner and all I knew was he, you know, sort flop I could feel that flop.

Antonio was taken to the NICU to see where his son was being cared for, before being sent back to look after his wife.

And, but at the same time the paediatrician came to the room and he said, “Who is the dad?” again and “I need to take you to the intensive care unit so do you know where your baby is?” and tried to explain, you know a little bit of the condition. That was the first diagnosis just within those ten minutes probably. So I went to the intensive care unit and I saw [son] with all the tubes and the only thing they told me whilst he has the meconium and this is a condition that requires to have him in an oscillator to help him getting rid of all the meconium that he swallowed. This is something that will normally take three to five days to recover. He will need to stay in the intensive care unit he will be fine. That was it. And he said, “We are going to let you know we’re taking additional studies or tests and we will let you know, as soon as we get more information. Your time is now with your wife and make sure that she recovers.” And then as I was coming by one of the nurses who’s from Spain, you know, I think he saw, he recognised my surname or was me speaking and he said, “Well don’t worry come here” and then he started to explain a little bit more about the condition he said that “Babies are very strong that they, they look very fragile. But they can recover very quickly and this meconium thing is something that happens very frequently” and he repeated the same things as the paediatrician, “You’re not going to leave home tonight but you will need to stay for a couple of days. But everything is going to be fine”. So again that gave me, those two conversations gave me more confidence about things that were happening so that I could focus on Alix. So I came back to Alix and I said everything is fine [son] is okay, well he didn’t have a name at that time I think. He is okay.

Alix and Antonio described how their experience on NICU could be dictated by the different ways that nurses on duty dealt with their son.

Alix: Well this was the difficult thing that everybody had different, all the nurses had different way of dealing with [son] didn’t they.

Antonio: Yes.

Alix: Some people would, some people would call him by his name some people call him baby or baby [surname] the odd time they even got his sex wrong and said she instead of a he [laughter] things like that. Some people would have, it was a sort of incubator were the lid came off like this and sides because the sides come down as well and some people would have the lid up but the sides still up, some people would have the lid up and the sides, actually no they didn’t really have the sides down did they, some would have the lid right up and they would have the lid laid down.

Antonio: Yes.

Alix: I think you could also, I think it had wee doors within the, within the side, there were so many different combinations of what you could do with it and everybody did it differently and that was what was hard to deal with because whenever you came in you came into the unit through the doors and it was one cot and then it was [son] down in the corner and whenever you went in, you kind or knew how you're day was going to go, if you saw the lid up you thought is it a good day we can sit there, rest on the edge, you know, just you can touch him or just see him or talk and know that he can he can hear us and we had books underneath you know we were reading to him all the time and then there’d be days you’d come in and the lid would be.

Antonio: Closed.

Alix: The top would be closed and you really couldn’t get, you really couldn’t get into him.

Was that because of his condition was poorer and that’s why it was closed?

Antonio: Not necessarily, so that was a constant, yeh.

Alix: Not necessarily it would be just people dealing with him in a different way. The first day he was there and the first nurse I think she ended up being my favourite because well she was the one who introduced us to everything and she had the lid up and she was yes and she was very positive and very caring and I felt very safe with [son] in her care then you’d have other people who would say you know have the lid down you know, he’s a very sicky baby, you know, we need to have.

Antonio: Don’t even remove the blanket that was on top of him because of the light. Or don’t touch him.

Alix: The light and things, his eyes, his eyes were closed and he was a full term baby, now I can understand a pre-term baby, you know, would be much more sensitive because they were awake and, you know, there are lights in the ceilings and, I don’t know just things like that, I just wish there was a bit more.

Antonio: Consistency across the care.

Once their son was strong enough for surgery, the surgeon explained what she planned to do, and asked Alix and Antonio to sign the consent form. They were happy he was finally going for surgery.

So yes he’s, he’s decided just to get better and they said we’re fine we’re 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’t 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’t 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’t 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.

Alix and Antonio received a call very early one morning. They feared there had been a setback, but actually their son had been transferred out of NICU and was ready to come home.

But all these questions start to risen, regarding his, his future life what is going to happen does he need to get an oxygen tank with him all the time we never really talked about the, the second effects or the secondary things that could happen. We asked about them and they were all well the book said that your baby can have, development issues, that you will get respiratory problems, that he can probably not hear to noises - but we will not know until the later stages so we will keep a very close monitor for that. Then I think the last day on [city] was really another shocking day because we were told that as soon as he recovered or he demonstrated to breathe by himself or to be able to breathe by himself that we were going home and that was their only comment you are going home as soon as he can breathe by himself. So it was a day where we, well he was fine, we went to bed but we decided to stay quite late in the unit because of that nurse, Alix said I want to stay until midnight. There was a another nurse that night that was closer to us and we were talking to her and she said, “Oh yes he’s still quite poor” and she mentioned the word, poor, this was after one of the lungs collapsed and she said that “We will let you know, whenever if something happens we’ll call you back”. So the next morning we call the unit, no we were supposed to call the unit but we had our showers and we had two missed calls one for Alix and one to me. So we thought well this is going to be bad news again and so we were we were called directly to our phones at this time in the morning that means it’s very bad news. So the first thing we did after that was call back the unit and they said, “Well this is this is the [surname]’s we want to see, what’s the status for [son]?” and they said, “Who’s [son]”? “Yes he’s the baby that’s in the cot beside you” because we were close to the phone or to the line receiving all these calls. “He’s in cot number two and he’s just beside you” and they said, “No, no there’s no [son] in this unit”, “But you called us so what does that mean?” “Oh don’t worry let me try to find the information and we will call you back”. So we were shocked right so we, again so we had all these ups and downs, we went to surgery then he came down again he was really poor two nights ago, he was better yesterday but wasn’t fine, wasn’t perfectly fine, or wasn’t the same level that he was before surgery or just after surgery, what’s wrong? So they called us back and they said, “Oh yes he’s not with us because he has been transferred to the high dependency unit and that happened over night. So we were calling you because you were going home.” And they mentioned again the word home, “And you need to come and see which are the procedures to follow”. When they told us that we thought well this is going to be a couple of days until they stabilise him in the high dependency unit so we asked the question “How long is this going to take?” And they said, “We are already starting with all the documentation, I think a maximum of one hour” [laughter] we were like how can this be happening right.

Alix and Antonio found it very frustrating to see their son go through surgery and then suddenly take a step back because of problems with his breathing.

But then on Thursday we saw him again sleeping and with the high frequency ventilator and they told us well the problem we have now is not because of the hernia but because one of the lungs, the good one, collapsed, it’s just full of liquid and cannot cope with this, it’s probably because he has been intubated for a long time and just collapsed. So of course now it’s now with the high frequency ventilator we are making that exchange of gasses working but without the high ventilator he cannot breathe by himself. So it was quite frustrating because all the time from day one to day ten and then day 13 which was the surgery I was always telling the doctors just give him a chance just give him a chance to go to surgery that’s his chance if everything else that you can do before is just going to keep him stable but he needs the surgery, he needs the repair, if he doesn’t get the repair then it’s all the efforts that we are wasting so please give him a chance even if it, this is when he was in a really, really, really poor condition. Even if he's in a poor condition just take him. And of course they were just trying to consider my comments as yes you are the parent and you know, we know and we understand how you feel but we’re the experts and we’re going to deal with this as necessary again very again they were not confronting us they were just accepting our feedback. But then going through the surgery and looking at him recovering and then suddenly falling down again was very frustrating because, we gave him the chance and now he was not responding to that chance so we were very sad, we thought he was going to be that his lung was not big enough or not strong enough to be able to breathe by himself. 

So that’s when the physiotherapy idea came from one of the surgeons, sorry one of them, I think it was one was between the surgeon team because they were consulted every day, Miss [name] came every day to see [son] after surgery and they it was the surgeon team and the paediatric team, the paediatrician team to discuss about this physiotherapy. And similar as the days before the surgery he was very poor on the Thursday and because of the lungs collapsing they collapsed one twice, the big one twice and the small one once. then on Sunday morning we came back and he was back on his tummy and he was waking up and they said well we don’t know what happened the only thing that we did overnight was to change the tubes, we were changing the tubes form a 3.5 to a 4 and that, that well we follow the physiotherapy and that seems to be working. Because Alix was not happy with the nurses during the night or one particular nurse during the night. I don’t think it was the nurse, I think it was really the condition after surgery, the recovery after surgery. So that was on a Sunday he recovered and then from there on that’s probably day 17/18 from then, then on every single day it was one drip less, one sensor less, one tube less and then suddenly we saw the smile, because there was no tube. So it was it was the recovery was just so quick. And then that brought back the comment from the Spanish guy he said they are so fragile but they are strong inside and that’s tryst, yeh, so they can.

At one point Interview Alix and Antonio’s son was not doing well, and doctors considered sending him for very specialist ECMO* treatment. They appreciated how the consultant gave them the information.

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’t 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’t 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’re 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’t 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’t 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.