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Parents of children with congenital heart disease

Preparing for birth & labour

Parents we interviewed who discovered during pregnancy that their baby had a congenital heart defect were encouraged to visit the intensive care and special care baby units and the cardiac ward before their baby was born. Those who did had found it helpful to become familiar with the environment that their child would be in after birth. One mother said that the information the fetal cardiologist gave her had helped to prepare them for their baby's birth.

 

Visiting the intensive care unit and cardiac ward before her twins were born had been very...

Visiting the intensive care unit and cardiac ward before her twins were born had been very...

Age at interview: 3
Sex: Male
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The other thing that we did was actually we went up to the hospital and went to the various wards. We had sort of a tour of the cardiac ward and went into intensive care. And that I think was the most beneficial thing that I did because it does prepare you.  It is pretty awesome, nothing can prepare you totally for what you've got to come. But to go into intensive care before hand, really was a great help, because you've never seen anything quite like it before and I think if you hadn't gone in there first, it would have been a big shock, a really big shock. So, I would certainly say that was the best thing I did really, was to go in there first. And also we went to the neonatal ward as well, and the special care and again, in normal life you'd never of seen anything quite like it and it is quite daunting. So to have been in there and just witnessed beforehand, it just prepared for a little bit for what you had to come, and where you had to go, and so definitely very beneficial.

 

Information given to them by the fetal cardiologist had helped them to feel prepared for their...

Information given to them by the fetal cardiologist had helped them to feel prepared for their...

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And we also saw the fetal cardiologist, the sort of heart, the babies' heart specialist to make sure that, that everything was going OK from that point of view.  And she was able to prepare us about what was going to happen after birth and we were lucky in that the hospital we were booked into did actually, was actually quite a, a specialist hospital. Well it's quite a big teaching hospital anyway so we were happy that that was a safe place to deliver and if there were any problems you, you know, they had a good special care baby unit there. 

And it was uncertain really whether she would need to give, it depended a lot on how she, her condition when she delivered and that some babies with her problem might have needed to go to special care and be sort of stabilised, some might actually be quite poorly, they might actually need an operation very quickly and in the first couple of days.  But the majority of, of babies, that was very unlikely and probably, you know, we would just follow her up and, and, and have the operation at a later sort of stage.

So we felt quite well prepared for what was going to happen but obviously still quite scared that she might end up needing something quite quickly. And in fact when she was born, so I had a normal delivery, and when she was born she was in really good condition. She cried immediately she came out, she wasn't blue, she was great really. And they wanted me to stay in for a few days just to kind of monitor things so I sort of stayed in 3 or 4 days but she was fine and feeding well and everything.  So no problems, we just went home with a sort of outpatients to see somebody at a month.

When the baby was born, were you able to hold her and to ...

Yeah, yeah.

Did she stay with you?

Yes she did. We were very lucky. I mean, we had a very sensible paediatrician who, who was at the birth because obviously there were concerns that she might come out completely blue and, and need resuscitation but she came out screaming and pink. And very sensible paediatrician who put her in a, you know, said 'Put her, give her to mum' immediately. And let me have a cuddle and everything and then she sort of had a listen to her and had a look at her and she said 'No she's fine, she can come with you and we'll see her tomorrow sort of thing.' So, yeah, so, I think she was quite experienced and she was, you know, took it in her stride and said yeah she's a healthy baby and so.

Many felt apprehensive about what the birth would be like; for example, whether the medical support would be available and what condition their baby would be in. One couple explained that despite their fears beforehand the birth had gone very smoothly. One mother who lived far away from the specialist hospital was glad when it was decided to keep her in hospital for 4 weeks before the birth.

 

They were worried that sufficient medical support might not be available when their baby was born...

They were worried that sufficient medical support might not be available when their baby was born...

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Mother' I asked for elective caesarean because I was so traumatised by the thought of the birth and how it was going to affect the baby, because of the baby having all these heart problems, and they said that the baby's fine until the baby actually is born and then the problems start. And I got myself in a bit of a state really didn't I about the birth, about the hospital where I was having the baby. About them being prepared for the baby. And then about the baby being transferred to the specialist centre. It doesn't matter how many times I asked them and they reassured me, I was still so frightened that somebody somewhere wasn't going to be ready for us. 

Father' I suppose, thinking about delivery wise, it probably went smoother than our son, you know when first one was born. Everything seemed so calm, right through from you started contractions, until they took us to the hospital with the midwives and the doctor, they were just so calm about the whole thing and everything sort of happened very quickly but very calmly - it was a good delivery, it was strange because I don't know what we were expecting - you know and it sort of, as like my wife was due to sort of, she was ready for delivery. I mean the one the doctor came in and saw her she said that you know we can't sort of know what's going to happen when the baby comes out whether she'll be alive or what, which was daunting at the time and upsetting but we just sort of OK fair enough... she said let's deliver this baby. 

And sort of everything just went so quickly, and they were so good. Just I mean all the staff that were just concerned were really, really helpful and they couldn't do enough. 

Some mothers had had a natural birth. A few had a caesarean section. One mother chose a natural birth because she felt it was the one thing she could do to help her baby. Several parents recalled that their baby's condition was better than expected at birth, in a few cases it was worse than expected.

 

She chose a natural birth because she felt it was the one thing she could do to help her baby.

She chose a natural birth because she felt it was the one thing she could do to help her baby.

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I was transferred to a different hospital and I was very lucky in that the obstetrician was very much wanting me to, wherever possible, have as a normal a pregnancy as possible and as normal a delivery as possible in terms of, you know, I wasn't to be any different to anyone else. Which I think was very good for me. I know that some people in these instances with an antenatal diagnosis end up having caesareans and, you know, if that worked for them that's great but for me it worked being, being told in other ways it was a normal pregnancy and that was really helpful. 

I tried to have as natural a labour as possible because even though I'd been told that there was no reason that it should be any different to any other birth I sort of wanted him to have every chance possible and try and, you know, get him moving as quickly as possible and, and so on, so that was again, that was one of the things that I felt I could do myself, I could control.  I knew that once he was born I couldn't control anything but that was one thing that I could do something almost for him so, you know, try not to interfere with drugs and bits and pieces.  

At birth, some babies could stay with their mother and were discharged a few days later with a follow-up outpatient appointment (see Interview 12). Other parents said they could only hold their baby for a very short time before it was taken to the special care or intensive care unit.

Being separated from your baby after birth can be very distressing. Several mothers had found the return to the maternity ward without their baby very difficult. Seeing their newborn baby in an incubator attached to various wires and monitors was also very hard.

 

Explains that it was very hard and upsetting being separated from one of her babies after birth.

Explains that it was very hard and upsetting being separated from one of her babies after birth.

Age at interview: 3
Sex: Male
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So I went in there and saw Max and I think with him I was able to have a little cuddle.  

But with Sam we, I couldn't cuddle him, I could just, just about sort touch his hands and then the ambulance arrived to actually take him to intensive care and I have to say that was one of the worse moments. They came in and they had a special incubators, travelling incubator, and he had, he had to literally go sort of across the road but they have to take him in an ambulance. So it wasn't as if they had were taking him miles away, it was walking distance but they were sort of getting him all ready and then they wheeled him out and put him in the ambulance and off it drove. And I have to say I broke down then. That was probably, getting on to one of the worst moments to see him just go like that, even though he's literally only sort of going across the road, to the main hospital to the intensive care unit, but I did find that very, very hard. And I wanted to sort of get over there but you know they said well it's not a lot point straight away, because they've got to get him there.  They've got to get him into intensive care and out of this incubator and all sort of set up if you like, sounds a strange thing to say. And they'd prefer it if you're not there at that time which is quite understandable so I then spent some time with Max. But that was very, very hard.

 

She felt very disconnected after the birth of her baby and found it difficult returning to the...

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She felt very disconnected after the birth of her baby and found it difficult returning to the...

Age at interview: 7
Sex: Male
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I felt very disconnected. I'd just had a baby and you have these wonderful feelings of euphoria that you have after giving birth and then laying in the maternity hospital the next day. I felt very strange as if, 'Well I've had a baby but where is he? Have I really had a baby, was it all just a dream?' It was very strange and once I was able to stagger around the ward a little bit there were all the new mums with their babies in the incubators pushing them around, having cups of coffee and I felt very, I felt as if I shouldn't be there. I really felt, I felt very strange being there.

Some babies were transferred to the specialist hospital by ambulance for treatment or emergency surgery and parents were able to follow on afterwards. When a baby was transferred shortly after birth, some mothers could also be transferred to the same hospital.

 

She found it upsetting returning to the maternity ward with only one of her twins while the other...

She found it upsetting returning to the maternity ward with only one of her twins while the other...

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We still didn't know what was going to happen because the hospital that I gave birth at wasn't the actual hospital where the baby would have its surgery. It was just a hospital that I had to deliver at because there was a heart specialist there but they couldn't actually do the operation. So we had to, it was very hard because I had to go back down on to the ward and of course everybody knew I had twins and going back to one, just taking the one baby with me was very hard and emotional.  And people wanting to know where the other one was, and that was, that was very hard. And two days later they transferred the poorly baby to another hospital where he was going to have his surgery. And we followed down the following day to be there.

One mother who suffered a lot of bleeding and could not be transferred to the specialist hospital found it very difficult not to be able to care for her baby. Another mother had felt frustrated that she hadn't been able to spend much time with her baby who had to have emergency surgery soon after birth.

 

She found it difficult not being able to do the first things for her newborn baby when he was...

She found it difficult not being able to do the first things for her newborn baby when he was...

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Mother' But you, essentially after the birth what was really hard was that [our son] was taken away, he was put straightaway into the intensive care baby unit and, and [my husband] was actually sort of then dealing with it, he was the one that was going up, seeing the baby and you were the one that gave him his first bottle of milk because he then got transferred to another hospital quite a long way away. Because I was bleeding quite a lot I was...

Father'  Kept overnight.

Mother'  Kept in for a few days and so that was actually quite difficult to know that there were all these people who were doing the first things to my little baby. And that, and they were really enjoying it and having a nice time but I found that quite hard.

Father'  I can remember he went off to the other hospital in an ambulance by himself and that, that was quite hard, you known watching him go off.

Mother'  You know he was in an incubator, he had tubes absolutely everywhere that you could imagine and he was just you know completely, he was born and then put in this sort of incubator and just all alone really.

I think I was just really desperate to get out and I was actually in a ward where everybody else had their babies with them and I didn't and some of the midwives were great and others were kind of not that you know good. So I think I just, just really wanted to be there because I was getting phone calls from the hospital to say, 'What sort of milk powder do you want him on?' and 'Should we give him a bottle?' and 'I think that we're going to bath him now,' and things like that and it was just really, really hard not being there, not being able to do all of those little things.

And, and basically I was just feeling that all of, my daughter was being cared for by somebody else, my son was kind of over there, and I was just sitting there completely helpless not able to do anything really.


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Last reviewed July 2018.

Last updated December 2014.

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