Parents of children with congenital heart disease

Emergency surgery

Sometimes a baby needs surgery within a few days of being born in order to survive. Some parents already knew that there was a possibility that their unborn baby might need surgery soon after birth (see 'Preparing for birth and labour').

Others discovered after birth that their child had a congenital heart defect and, in some cases, also needed to have immediate surgery to survive. Parents felt bewildered, shocked and stressed. One mother describes having to follow on after their baby was transferred to a specialist hospital for emergency surgery in the early hours of the morning shortly after birth.


CHD was diagnosed soon after birth. Describes having to follow their baby who had been...

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Sex: Male
And Noah went in an ambulance and we couldn't go with him; we had to go separately and we had to wait for relatives to take us to the hospital. And when we got there, I think it was in the early hours of the morning, the surgeon met us there and they explained that the operation that they thought they would have to do. Noah was on a ventilator and they had lots of support drugs. It was really scary but they said if he got through the surgery he would stand a good chance of being okay.  

So I think they operated in the early hours of the morning and they gave us a room to go to while they were, while they were carrying out the operation and we just lay there really frightened and waited until the surgeon had finished. And the surgeon came out and told us that he had survived the surgery and was doing really well and we were allowed to go on to the ward and see him. 


Sometimes a baby's symptoms are not discovered at birth. Severe symptoms or heart failure, requiring emergency surgery, lead to hospital admission some time later. One couple describe how their daughter was admitted to hospital when she was 5 weeks old, needing surgery within 48 hours. Another couple recalls the shock when their three-week-old daughter was admitted to hospital on Christmas Day.


Describes their daughter being admitted to hospital when she was 5 weeks old and needing to have...

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Age at interview: 3
Sex: Male
From being, taking her to the GP the day before, having problems with feeding to having her on an oxygen monitor. The local consultant had a look at her and said that he wanted her to go to the specialist hospital that day. So we were taken up in an ambulance. My husband and I and my daughter and we were seen very quickly. We were given a heart scan which is available at the specialist centre and the heart scan gave very detailed results. And the registrar, I think it was a registrar who saw us, immediately said that there was something more seriously wrong. And that probably for me that was one of the worst times.

So he then called on his superior, the consultant and before long there was about several consultants, several registrars and a few students standing around looking at the scans and discussing it. And then the consultant sat us in a room and he said 'We've got a diagnosis'. Which was quite shocking. He, she was diagnosed with a condition called truncus arteriosus which means that she basically has an artery missing. And it is very rare although the specialist centre does have, see about 3 a year which is still not very many, considering it is a specialist centre. 

He was, he told me that she would need an operation within 48 hours and it, it was, it was quite detailed the sort of thing she'd need doing and they couldn't exactly tell us what she needed doing until she was in theatre. They didn't know exactly how bad or good it was going to be, which was very scary.

How were you feeling at that point?

Devastated. Devastated, yeah. Pretty much, that was probably the worst point, almost the worst point. And the, the doctor was very, very good. He was really, really good with us. And he kept saying, 'When you've stopped crying, I'm going to tell you a bit more'. And he, and he did and he kept coming back to me.  

So that night we went home and we left her in hospital, which was difficult, but she was sedated at that point. There was nothing we could do. We were asked to go home, get clothes and things, enough for two weeks because that was the amount of time that we would need to be spending in hospital at least. So we, we had to be practical at that point and go home.

The following morning was probably the very worst bit. That was before she went for the operation. And we just got through it because you don't have any choice. 


Describe how their daughter was admitted to hospital for emergency surgery when she was three...

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Sex: Male
Mother' And they said that they were, well they sent you home to get some more clothes didn't they? And then they said they were going to call some cardiac people down, which was a bit bizarre 'cos that wasn't what we were expecting at all. By the time you came back...

Father' That's when they told us, wasn't it?

Mother'They, they were there doing an echo on her and they told us then that there was a problem.

Father' I think we, we had every emotion under the sun I think didn't we?  

What were those emotions?

Father' Shock, 

Mother' Horror

Father' Yeah, horror... the, the feeling of not us, you know, it would never happen to us, nothing like that would happen to us. I think we were a little bit sort of bewildered as to what to do, you know...

Mother' Plus it was the middle of the night, as well and we were just...

Father' And Christmas Day

Mother' And it was Christmas Day. [Father' Yeah, yeah] And that, that morning we all been sat together opening presents and then she, and by that point she was in a state of collapse. She wasn't functioning and he said she was in heart failure by then and that she was, you know... and he said it very nicely but he said we'll have to operate first thing in the morning and she'll need more operations, was how he worded it. 

Father' So at two o'clock in the morning, they were calling all the staff in preparing to do an operation on Boxing Day.  

Mother' They moved us to the cardiac ward, didn't they, where they had all the equipment and then they started hooking her up to all the machines, which is, when it started to get quite frightening.

Father' Yeah, I think that we were initially in such a state of shock that you, you don't know what to do, but adrenaline kicks in and you know, you get on with it. What quite we were getting on with, I don't know. But it was a heck of shock heck of a lot of, you know, a big learning process, as well because people were saying things to me that I didn't understand, that I needed explained.

Mother' But they did explain it, didn't they?

Father' In the middle, yeah, but in the middle of the night, it's very difficult to for somebody who's tired and very busy looking after your daughter to actually explain everything. I think the following morning prior to the operation we had the surgeon and the..

Mother' Anaesthetist 

Father' Anaesthetist and the cardiac consultant, all independently came to see us to explain everything and they...

Mother' And they drew diagrams, which was helpful because they're saying all these wor

When a child is admitted to hospital suddenly, it can be difficult for parents to take in all that is happening. One mother felt totally unprepared and in shock when she discovered her baby had to have heart surgery within a few days.


Describes learning of the diagnosis as the investigations were being carried out and discovering...

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Age at interview: 4
Sex: Male
It was just all too much to take in. It all happened so fast. The Monday we were in hospital here with a chest infection, the Thursday he was having his heart surgery. So, I do remember people as being sympathetic and supportive and appreciating the fact that we were completely unprepared for this. We had no knowledge. And there might have been bombarding me with a load of information but I just cannot remember. I just, I just couldn't think straight. 


And the way they told you, was that the best way they could have told you?


I don't, I can't really think that they could have told us, told us any other way. I think a lot of heart babies are admitted to hospital thinking, doctors thinking that they have a chest infection. I don't think there's any easy way of telling somebody that their child's got a heart, heart condition and requires surgery. I don't, I can't think it could have been improved on in any way. We, we sat down with the consultant and the surgeon and when they were doing the heart scan we were sat there with them. So as they were discovering things, we were there and they were telling us as it happened. It just all happened so quick. We were just totally unprepared.  


Parents described having been going about their daily lives in the morning and later the same day seeing their baby in the intensive care unit being prepared for heart surgery. One mother had one morning been at home washing nappies and making toast and peanut butter for her toddler, and later on that day her baby was being transferred to a specialist hospital attached to an oxygen monitor. One couple explains that the intensive care environment where their newborn baby was before her operation was very calm, and that had helped them to keep calm.


Recall that the calm atmosphere in intensive care before their baby was taken in to theatre for...

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Sex: Male
Mother' They were very good

Father' They were good there, it was, it was strange to say but it was quite relaxed in a certain way and unlike an adult intensive care where, I suppose there's a lot more activity and a lot more rushing around. Certainly with the children they seem to you know, take their time with more and take more time with them. So that it was it was good, we were impressed I'd say, to say the least.

Mother' They were very calm.  

It was calm?

Mother' It was very calm, very peaceful. It wasn't like I suppose a normal hospital ward where you've got people rushing around. They just all move very, very slowly and you can see even in an emergency, they all just walk normally. I just think it's nothing like, nothing like what you see on the telly programmes.  

Father' That's right. It was a case of, they did, you know, they obviously got to where they had to go very quickly, but it wasn't like a mad panic rush. It was all well structured and it, you know, you do feel better, when you see that rather than just people running about and screaming and shouting and that, so.

How did it make you feel better?

Father'  I think in, inside yourself when it is going on, you, there's a certain element of panic and if people are rushing around and screaming and shouting, that's only going to elevate your feelings of panic. Whereas if things are calm, you can at least logically look at it and say right, they're doing their job, there's a problem, an issue but they're dealing with it and they're dealing with it properly and they're not panicking so it makes you feel a bit better.

Making sure that parents are given information and explanation can be difficult when staff are occupied with making a very sick baby stable. One couple recalls that the staff explained very well what was happening when their newborn baby was transferred in the middle of the night to the specialist hospital for emergency surgery. Parents said that the risks of their child's operation were also explained.


The staff were very good at explaining what was happening when their newborn baby was transferred...

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Sex: Male
Mother' I had the option to be discharged and transferred myself to the maternity unit which wasn't actually with the paediatric intensive care unit at the same hospital, it was like across the road. So we made the decision to get discharged and I came home and then we went down the next day. All the way through we could of, we stayed with her and we had the option to stay with her. But it was just, I think it was just the experience, it was late at night'

Father' And I had followed the ambulance down and then come back, had some sleep and then we both come down the next morning 'cos there wasn't really anything that we could do at that point.  

Mother' We were just really, really the unknown, we didn't know what was happening with her and what was going to happen and they'd said she was going to be operated on the next day from the information you got during the evening.  

Father' I mean, the surgical staff had actually come in to examine her because it was going to have to be very early the next morning and they were very, very good at explaining they were really busy trying to plan it but at the same time, they were explaining it to both the night I went down there with her. And the next morning, when we went back they actually came in and went through everything again in a bit more depth 'cos they'd done the plan for the operation by then. So, yeah we can't fault them. You hear lots of horror stories about hospitals but we really can't fault that one, you know, for what they did.

Mother' We also got a call didn't we, from paediatric nurse that was looking after her before we sort of, left to go down to see her, to explain she was looking after her and what they were doing with her and what they'd done with her like overnight. And basically what to expect obviously when, when we saw her because I don't think either of us really realised what would be attached to her. And when we got there she was attached to monitors and to tubes and tubes and wires everywhere.  

When surgery is required immediately, parents have no time to seek a second opinion and need to trust their doctor's decision. One mother recalls that there was no option other than to consent to their baby's surgery, otherwise he would die.


Explain that his condition was so serious that there was no time to consider any option other...

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Age at interview: 4
Sex: Male
I don't recall us being involved at all. We were just told that this is what he required and that was it. I mean, he had to have, he had to have his surgery. He wouldn't have, he was in heart failure. When he went over to England he was in heart failure so there wasn't, there was no time for negotiations or discussion or second opinions or, we were told on the Tuesday, he had his surgery on the Thursday. I don't think, I don't recall us being given any options that they could do this, this or this. This is what they were going to do and I suppose we never, we never questioned it. We were just, there was nothing else we could do. We just had to leave it over, just hand him over to the experts and pray and hope that they would get it right.


When a child is admitted to hospital in an emergency, parents with other children need to make sure they are looked after. One couple took their older son with them to the hospital because there was no one who could look after him. Often grandparents were called upon to look after other children. One couple describes the dilemma of meeting their older son's needs when his baby sister went into hospital.


Describe making sure their older child's needs were met when their baby was admitted to hospital...

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Sex: Male
Father' I think the other concerns that we had had were [son's name] our son [Mother' at home] and how we were gonna look after him and or who was gonna look after and there was big. It was great because we were very lucky to have, to have a lot of people around us. 

Mother' And it was Christmas holidays and they were all off work, which was extremely lucky.

Father' But it, it was a big concern that although all your main focus is on your child that's sick, you, you've still got a whole family and everything and life to get on with as well.

Mother' Who we'd left, who we'd left on Christmas Day, which his presents, [Father' Hmm] wondering where were we? So'

What did you tell your son? How did you tell them?

Father' We told him immediately 

Mother' But, we, you know, well we tried to phone him in the night didn't we? [Father'Hmhm] We told, they obviously knew that we'd gone to the doctor's that was it and my Dad had come here to look after [our son] who was asleep and we tried to phone them in the night and he'd unplugged the phone, It was just almost horrific scenarios and so we couldn't get through till 6 in the morning and we got through and said there's a problem with Millie, it's her heart, which obviously was a terrible shock and they came down to the hospital. [Father' Hmm] The two mums came down to the hospital and they actually arrived as Millie was being taken away for the operation. And then they started building a plan of how they were gonna look after [our son].

Father' And we were, we were very lucky.

Mother' Because we were offered, you know, [our son] could stay on the ward particularly because it was Christmas, they were quite a lot of families staying on the ward, there was room but we wanted, we decided that we wanted [our son] to be kept here or at my mum's.

Father' Yeah, just away from, away from...

Mother' Away from it 'cos we felt he was too young, he was only 2 years 4 months, [Father' hmhm] and he was just too young to understand and plus he'd only just got his baby sister and I don't think he could have coped with there actually being anything wrong with her or' [Father' No] So we just said that she was at the doctor's and mummy and daddy were with her.

Father' And it did actually work. It did actually work well.

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Last reviewed July 2018.

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