Hayley & Thomas

Brief Outline: Hayley and Thomas’s first son was born with exomphalos*. Born at 39 weeks, he made good progress for the first 5 ½ months. But he had several complex health issues and infections. He passed away aged 7 months in hospital.

Background: Hayley is 33 and a childminder. Thomas is 35 and a business manager and they are married. Their son passed away aged 7 months.

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Hayley had a miscarriage and an ectopic pregnancy previously so she and her husband Thomas were nervous when they approached their 12-week scan at their local hospital. The sonographer identified that there was a problem with their baby’s stomach, either an exomphalos* or gastroschisis*, and referred them to a fetal medicine doctor at the specialist teaching hospital closest to them. It was a Friday so they had an agonising wait over the weekend. 

On the Monday morning they travelled up to the specialist hospital, where their care would now be based. They had more scans and met with fetal medicine doctors who explained the diagnosis and ran some more chromosome tests. The results from these came back a week later, and were not indicative of any of the rare congenital conditions sometimes associated with exomphalos, such as Edward’s syndrome*. Hayley had regular scans through the rest of her pregnancy but was advised that she could give birth naturally. She and her husband met with the surgeon and looked around neonatal intensive care unit (NICU)* to prepare themselves for where their baby would be cared for. 

Hayley was induced when she was 39 weeks pregnant, and their son was born weighing 5lbs, 6oz. He was taken straight to NICU where he was stabilised. Surgeons decided to follow the ‘paint and wait’ treatment, which meant no surgery was imminent, but it was on the cards at several points. Their baby son’s health went up and down dramatically. His exomphalos was one of several issues including hypoplasy*, hypertension (high blood pressure), a heart defect, hernias* and a severe reflux. During the first week he contracted sepsis and was on strong antibiotics, but then he rallied and did relatively well for 5 months, feeding, growing and developing. But at 5 months he picked up another infection and never really bounced back. His condition deteriorated, his breathing grew more and more labored and he finally had to be ventilated. But doctors and nurses kept fighting for him until the last – he passed way with his family around him aged 7 months old.

Hayley and Thomas were interviewed 5 months after their son’s death. Hayley was having regular bereavement counselling at the hospital and they had also had a debrief/follow up meeting with the medical team in charge of her son, which they found very helpful. 

*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. 

* 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.

* Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

* 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.

* Hypoplasy
Incomplete development or underdevelopment of an organ or tissue.

*Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

Hayley and Thomas had a two-hour journey to the specialist hospital for scans on her baby.

Hayley: So from here it was about well two hours because you have to include parking and at those times of the day so it was two hours. also we, so I had my midwife appointments at the doctors but she concentrated on me that’s how they described it, [specialist hospital]’s concentrated on the baby but then I had these odd appointments at our local hospital, where they just didn’t get it and they struggled to understand what was happening, sometimes they gave us more anxiety than.

Thomas: Yeah.

Hayley: Put our mind at rest.

Why were you going to the local hospital?

Hayley: They felt that it was right to keep both hospitals in the loop of what was happening in case there was an emergency and I ended up at our local hospital. But hindsight it wasn’t the best situation.

Thomas: No.

Hayley: Sometimes caused a lot more, you know, stress than needed.

Why?

Hayley: Well the first time I had an appointment with the doctor and she said something about his the circumference of his stomach that it was too small and I said no it’s not too small there isn’t one because he didn’t, they don’t measure that and she said, ‘Oh, oh yes, yes, yes he doesn’t have one,’ and I thought what? And then she said she couldn’t find his heartbeat and it was all a bit stressful. So then I went to my midwife and I asked if I could see somebody else in [county] and they, she said yeah and she put us to a more senior member of staff but then towards the end of the pregnancy [specialist hospital]’s thought it would be better to have the scan here and then a scan there so I was going every week or I think two weeks I think it was.

Hayley and Thomas’s son had an exomphalos. But after months of scans focusing on the anomaly, it wasn’t the main focus once he was born.

Hayley: And it’s really strange because when you’re pregnant you do you focus so much on the Exomphalos* and what it’s gonna look like and how you’re gonna feel when you see it and I don’t even remember seeing it, do you?

Thomas: I do a little bit, but it wasn’t the, it wasn’t the main focus.

Hayley: No which was just strange because when you’re pregnant that’s all you think about.

Thomas: It just looks like a water ball in that sort of way, that’s what it looked like. I looked at in the first instance and then it was more the focus was on him, if you know, cos he wasn’t breathing properly.

Hayley: Yeah.

Thomas: In that respect. I think that was the first indication that there was, there was trouble with his lungs.

* 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. 

Hayley and Thomas’s son had exomphalos and they had planned their roles. Thomas was going to follow their son, while Hayley recovered.

Thomas: So that was good, but when he came to, he was beaming, it was as if, as if he was ready for the world, he was looking, he was looking at me in that sort of way he was and he was trying to look at other stuff that was going around him in that sort of way, nothing else was moving but his eyes and stuff like that they’re all moving in that sort of way so that was a really, that was a really sort of special moment, a moment that it’s no joke when they say that the birth is the, is the best moment of your life and that was, in that respect it’s something that I’ve always treasured through everything that’s happened.

Yes, yes.

Thomas: So yeah and then that was, that was him so he was intubated and I stayed with him for about half an hour and that’s sort of were the doctors consultants and nurses in the neo-natal unit assured me that he was okay. Then I came down to see Hayley, Hayley was in the-

Hayley: Cos that was always our plan wasn’t it that you were gonna go with him because we’d watched the Small Wonders, Bliss DVD before we had [son] and we, we knew what our roles were then that he was always gonna go with him. I remember you at the door thinking what do I do, I was like [points] to the door.

Thomas: Yeah. You didn’t say that to me?

Hayley: No I did yeah.

Thomas: Yeah so, so yeah so they were really good up there and they said ‘Look’ no, it wasn’t at this point, I went down and got Hayley, Hayley had a chair and everything like that, and went up a little bit later on and they said to us he’s still doing really well but I’m just gonna leave him intubated but if he pulls that out then, then that’s it he’ll be, he’ll be fine to breathe on his own and then the rest of that night he was, he was, he’d a good night and everything like that.

Hayley and Thomas were in hospital for several months with their son who had exomphalos. The nursing staff were amazing and could make or break your day.

Thomas: I remember thinking it wasn’t as intimidating as I thought it would be in that instance cos you think intensive care is just, there’s just gonna be absolutely hell, hell on earth and it wasn’t like that. The nurses in that department are in such a routine and they’re so good that way that they sort of, they work to a structure and everything like that. They’ve always got everything under control and that so it was a sort of, it was an environment that was, that nothing because it was, it was an environment where you feel that nothing is gonna go wrong, if you know what I mean.

Hayley: Yeah which is, looking back now it’s ridiculous to think that.

Thomas: But it’s the impression that they gave you with them there and I think it’s a testament to the staff, how good they were, whether it be the doctors or the consultants or the, one of the nurses that just sort of, just reassured you all the time that it was, that it was gonna be alright. You don’t have any feelings that oh it’s gonna be this, that or the other, now they sort of reassure you that everything, it was okay from that, that period.

Hayley: At that moment yeah in that moment yeah. Yeah it’s a weird, a weird one.

Thomas: Yeah.

Hayley: But I think what, because we’d been there and it weirdly the, one of the nurses that showed us round or answered all my questions, I went with all these questions didn’t I?

Thomas: A book, a book full of questions.

Hayley: A book full of questions and she answered every single question and then when, I think it was the next day after [son] was born she happened to be on shift in the room.

Thomas: Yes.

Hayley: And you can’t, she didn’t look after [son] but you can’t imagine the way we felt that she, that we saw somebody that we knew, you know, she was just like, ‘I was wondering if it was you that we were waiting for,’ you know, just sort of.

Thomas: Yeah in two months, two months before we’d met her or something like that.

Hayley: Yeah and she just made you feel, feel, she was like ‘Oh I bet you’ve got more questions,’ and that yeah it just made you feel a bit better didn’t it?

She remembered you?

Hayley: She totally remembered yeah and that happened throughout the whole of his life.

Thomas: Yeah she did remember.

Hayley: People just always remembered us, if I went there on Wednesday and the sister was like ‘Hayley,’ you know, which makes you feel important doesn’t it.

Thomas: Yeah I think it makes you feel that not I nearly said important, that they cared, that they cared that you weren’t just a, a body so to speak.

Hayley: Yeah.

They remember

Thomas: Yeah.

Hayley and Thomas tried to make the best of their son’s situation for the last 6 weeks of his life, and make it as homely as possible. He had a bath and story every night.

Thomas: And the last six weeks of his life were really hard because he was intubated- 

Hayley: Tough.

Thomas: He was sedated all the time and that, that was really, really hard. But for the five months before that he was, he was like a normal baby only within the hospital confines and the hospital bedside in that sort of respect.

Hayley: But we tried.

Thomas: We tried to make the best of it.

Hayley: We tried to make the best of it and we tried to pretend that we, I know it sounds ridiculous, but this is where we lived and this is our, this is his home and, you know, I, we had play mats and I gave him a bath every night and.

Thomas: We would read him books.

Hayley: We would read him books.

What all on the unit

Hayley: All on the- 

And they were supportive of that?

Hayley: They were - you kind of didn’t do anything until somebody said it, because you, you weren’t really sure about the rules but, you know, it was like a, I’d always played [son] music when I was pregnant and then I was sort of trying to secretly do it without any and the nurse said to me ‘You can play music’ and then from then on we didn’t stop playing him music.

Thomas: Yeah.

Hayley: And even some of the parents would be like ‘Oh there’s [son]’s Disney songs’ and stuff, you know, we decided to do that or the doctor would say ‘Okay, have you got a play mat at home?’ and I’m like yes I’ll bring that in and just made sure that we just did everything you know. And that’s why when they said do you want to take him for a walk although it was scary we had to take oxygen and monitors and everything I was just like yes I can do this, we can do this because I wanted him to have the best that he could have.

Thomas: Give him an incentive to get out as well [laugh].

Hayley: No not like that but, you know, this, you know, you wanna be normal don’t you.

Hayley and Thomas found the communication with surgeons very stressful when they called up to tell them they were going to use “paint and wait” rather than surgery straight away.

So what had they done with the exomphalos*, was it in a silo* or?

Hayley: So this is the bit where [specialist hospital]’s kind of so they wrapped him in cling film first off and then they put a doughnut round him just to keep it in place, he was on his back wasn’t he. And then because it was the weekend we kind of didn’t have people round to tell us what was happening really and we didn’t have any accommodation so we were actually travelling back and forth for that first four days?

Thomas: Yeah something like that.

Hayley: Which was horrendous. I think that’s why I don’t remember any of it.

Thomas: I think the first, I think the first few days was we still stayed in the Premier Inn.

Hayley: No one day.

Thomas: And then we then we came back, back and forth from here.

Hayley: And again that was horrendous because we had to leave him at a certain time cos of the traffic and, you know, it was just awful I just remember it just being hell. And we arrived here one night literally just walked down the gate and we’d arrived and they said we’re going to feed him now and there isn’t enough milk so we need your permission to put him onto formula and I just didn’t know what was happening and I’d been expressing constantly and I just didn’t know, well why are we feeding him now what’s happening is he not having surgery and the nurse was like ‘Has the surgeon not spoken to you?’ I’m like ‘No’. So she passed me onto the surgeon who was a registrar, he talked as if I knew what he was talking about, he was like he’s not having any surgery and then started talking in medical terms and I remember saying on the phone ‘Are you doing paint and wait*?’ and he said, ‘That’s exactly what we’re doing,’ and I thought, why didn’t you just tell me this because in our minds at the time we thought that was the worst thing in the world.

Thomas: We had to phone back, Hayley had to phone back and clarify it because I think she was in here taking the call and I was in there and then she came back and-

Hayley: And we had loads of questions and what he’d said and…

Thomas: So we phoned back and I think they were able to clarify.

Hayley: Yeah but then again paint and wait but we didn’t really know him because the whole time we were pregnant we were thinking we wanted him to have surgery so that he would stupidly, naively just be better, but that, you know, now we look back and think paint and wait was definitely the right thing to do but at the time you just don’t understand what repercussions that’s going to have to his life and stuff like that and, you know, he really sat us down and explained it to us. It wasn’t until the next day that we went and we saw our surgeon and he took us aside explained it all and we felt much better but that phone call was just the worst thing, I didn’t really know.

*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. 

*Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

*“Paint and wait” technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.

Hayley and Thomas said that silence after their son died was the hardest thing. They have been offered great support through a follow up meeting with the medical team who cared for their son, and a bereavement counsellor.

Thomas: And that way he took that, he took that away from us.

And that was four or five months ago now?

Hayley: October, end of October.

Thomas: Five months ago now, yeah five months ago next week.

Hayley: Yeah.

Thomas: But yeah you know it’s just.

Hayley: Feels like a lifetime ago.

Thomas: It does, it does, it feels as if things went really, really, really slowly since it, if you think the years fly, the years are always flying by but with this it felt like years rather than months in that sort of way.

It must have been, I mean hard on so many levels but-

Hayley: It’s the weirdest thing because it’s just like the silence.

Thomas: It’s.

Hayley: The only way to describe it, when you leave that room just silence, nothing.

Thomas: And it’s that sort of thing-

Hayley: And our family went because I think they thought that was the right thing to do didn’t they.

Thomas: Yeah.

Hayley: And we left, literally left the PICU to nobody, nothing, we didn’t even have our home to go to. We didn’t know what we were supposed to do either, we was-

Thomas: Yeah they let us stay at the hospital because he passed away at the weekend as well.

Hayley: He passed away on the weekend.

Thomas: It’s the weekend he passed away.

Hayley: There was no bereavement services there was no support people, there was nobody, even the, what is it called the where they go.

Thomas: The mortuary.

Hayley: The mortuary was closed because it was the weekend because, there was this, just this craziness.

Thomas: Yeah.

Hayley: And there was nothing there were no funeral services open, so, we couldn’t, we didn’t know what we were doing, we’d never planned a funeral in our lives.

Thomas: But then, that’s when our parents were really good.

Hayley: Our parents were really good because they were like, don’t worry this is what you’ve got to do and, you know.

Did you start that that weekend or did you wait till Monday.

Hayley: No we waited till Monday.

Thomas: We waited until the Monday but I went to.

Hayley: Which actually in hindsight it was quite a good thing.

Thomas: Yeah it was.

Hayley: As it meant you didn’t rush into anything.

Thomas: And this thing as well, I went to Mass on the Sunday and I’d spoken to the priest and the priest had given, give us a better direction where to go and he phoned the funeral directors and said look this young family’s gonna be in they just lost their-

Hayley: And they were lovely weren’t they? 

Thomas: They were sort of ready for us coming in and they were excellent, absolutely excellent.

Hayley: The nurses in the PICU, because we went up there and asked them what we do next.

Thomas: Yeah they done their best.

Hayley: They done their best but obviously that’s not what they do, they do this bit.

Thomas: And thankfully, and thankfully from their perspective it doesn’t happen very often in that sort of way so it’s not something that comes round thankfully on a weekly basis. So it’s out of the blue for them when it does happen.

Hayley: But the meeting was really important because it helped you didn’t it cos you was whirling around questions and this and that and could they have done this could they have done that. And for me it made me, let me ask, because it’s really weird when you’re in the hospital and something bad happens or something goes wrong you have, you have, you speak to them after and you talk about it or what happened here, what happened there and what could we have done. But when it happens at the end there’s none of that you just go, you don’t really know what just happened. You know, and when you’re, when you live in the hospital and you’re used to that talking about what happened what we did this we did that and at the end there you just don’t, you don’t, you only.

Thomas: They kept us out of it.

Hayley: Yeah and you don’t know what’s happening because it’s so fast and they’re just doing what they have to do so they don’t talk to you about it and actually it’s at the end there that you need that like closure of the medical stuff.

Thomas: And it helped, it helped me to cope cos I remember-

Hayley: Because that’s what it was it was closure of the medical stuff and as soon as we had that meeting I hardly ever think about his medical life, I think about him.

Thomas: And it helped from that sort of therapy point of view going back to the hospital because I remember leaving it the day after he’d passed away and it was really bad leaving the hospital without him for the last time and I remember a couple of days later when I had to register his death in [local authority] and I wanted to go a route where it avoided the hospital in that sort of way, but as soon as I walked through the door of that hospital it felt it was [son]’s home.

Hayley: Yeah.

Thomas: It felt, they kept from the road up into the car park it was absolutely terrifying, daunting and sad, as soon as I walked through that door something just sort of, some sort of spirit just sort of - it’s his house in that sort of way and all these good memories came back.

Hayley: And they a gave us a level of support as in they referred us to a bereavement counsellor who said that she had so many e-mails from different professionals about us and the support that they wanted for us and we thought that was really special-

Thomas: Yeah.

So what support have you got from the bereavement specialist?

Hayley: So we had, I’d see her every couple of weeks, [husband] comes now and again don’t you, you stopped coming really.

Thomas: Yeah it comes, depending on my work commitments, I’ve had a hell of a lot of time off work, they were absolutely amazing with me and I just, I don’t want to take too much time off if you know what I mean.

Hayley: So I see her every two weeks but she’s at [specialist hospital]’s so sometimes it’s nice and sometimes it’s difficult.

Yes.

Hayley: But I prefer to see her because she actually worked in the neo-natal unit so she knows the life that we had and stuff like that.

Hayley and Thomas’s son sadly died aged 7 months from complications from his exomphalos*. They found the conversation with the doctor about turning off his machines “devastating” but well handled.

And did they prepare you for a bad outcome or?

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

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

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

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

Hayley: He was getting worse and worse and we just couldn’t even think about it. But they said let’s get through this weekend, this was the Friday wasn’t it, we’ll get through this weekend and see how.

Thomas: No this was the Thursday.

Hayley: Thursday and get through this weekend and see how he’s doing on Monday and we, we’ll have a meeting then. And on the Friday he passed away so we didn’t have to decide.

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

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

Hayley and Thomas had a son with exomphalos who died when he was 7 months old. They are still involved with the online forum, as they want to help others who are going through the same experience.

Hayley: Yeah it was difficult but we also had the exomphalos Facebook group were we had lots of support and, you know, people talking about their stories and things like that.

I think you mentioned earlier that you got onto that during the pregnancy did you?

Hayley: 12 week scan.

Okay.

Hayley: Yeah.

And it was helpful from day one was it?

Hayley: From day one, I met my friend, [friend] through it, she was also pregnant at the same time and just the people that have been through things before, you know, just you’ve gotta listen to them and somethings were scary but at the same time you just think well they’re doing it so it’s, you know.

Thomas: I think you feel that crumb of comfort listening to these people that, and it wasn’t just you it was other people that had been through this and come out the other end with positive outcomes, it was more that they’d all been more positive outcomes than negative ones at that stage.

Hayley: Yeah, well, but I think that you kind of see that though, I think you see what you want to see. I think you might scroll through the ones you don’t want to see. It’s true though cos when he, when he came and he had other things I suddenly saw things that I hadn’t seen before.

Thomas: Yeah, I suppose.

Hayley: Yeah, which is a strange thing, yeah. But I think it’s very important thing to have to know that you’re not alone, you know, because nobody has heard of it, all your family they have no idea, and they don’t know what you’re talking about so when you’re saying all these words that now you understand, they still don’t have any understanding of it and it’s quite lonely like that isn’t it?

Thomas: Yeah I mean cos you had that forum, you could-

Hayley: Just yeah get all the words straight in your head and, you know, do your research, there’s not a lot of research out there obviously so that was the only place you could really ask questions really. Even down to like, you would ask what to pack in your hospital bag, these silly things, you know, how long before they get dressed and.

Thomas: I don’t think that you say anything on there that you don’t get an answer back on something, whether it be something that that is as simple as what she just mentioned there or whether it was a really serious medical thing, there was always someone that came back with a, with an answer or a train of thought to go into.

Hayley: Yeah.

Were there ever a negative place, difficult place?

Hayley: I think you have to, you have to read it right, you can’t take what everybody says as the truth that- nobody’s a doctor on there. And we have this kind of be rationale about it, you can’t just, oh my child’s gonna have this or, you can’t do that, you have to be very, you have to kind of choose your friends almost as well because some people you want to listen to, some people you don’t, which is, and then obviously when things, obviously for us when [son] passed away it became very intense and quite hard to listen to and stuff but that’s when it went a bit negative wasn’t it. 

Thomas: Yeah. Cos you’ve come off it now haven’t you?

Hayley: No I’m on the English one. The American one was very over saturated with people and lots of things.

Was there too many people on there?

Hayley: Yeah whereas the English one I find, I know the people, I feel like I know the people so I still want to know how they’re getting on and, you know, help others that are going through the same journey but the American one I found too, too much so I came off that.

Thomas: More people.