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Parents of children with congenital heart disease

Paediatric intensive care

Immediately after their operation, children spend at least 24 hours in the paediatric intensive care unit. Children are attached to specialist equipment, drainage tubes, a ventilator and drips to help them recover. Sometimes the chest is left open for a short time after heart surgery and a tape is put over it.

It can be a shock for parents to see their child in this environment. Parents remarked that visiting the intensive care unit before their child's operation had helped to reduce this shock. Some said it wasn't as bad as they had expected. Sometimes one parent found it easier to cope than the other. Others found themselves coping better than they had expected.

 

Differences in reaction to paediatric intensive care ward between husband and wife.

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Age at interview: 3
Sex: Male
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F' But when Dan came off catheter he was in high intensive ward for about a week. [my wife] found it extremely difficult to just even touch him.  I, on the other hand, had no problems with that so'

Why do you think that was?

Mother' It was because I was absolutely terrified of losing him. And, I didn't want to allow myself to, to even care about him and, I know that sounds terrible, I did care about him but to actually have the emotion of wanting this baby I didn't want to allow myself to feel it because I thought if he, if I did lose him I didn't know how I'd be, you see. And that's why. It's, it's really, I can't, it's very difficult to, to describe. When you've been told for so long that you're not even going to have this, that he's not going to live, he won't even make getting through the, the maternity ward to the operation and then he's there and he's had the operation it's extremely difficult to, one, accept he's pulled through to, to, secondly to believe he's there, he's, he's yours and thirdly it's like you love him to death but you can't, for myself, I couldn't allow myself to become close to him. And when he were in intensive care I did find it extremely difficult to touch him, to talk to him. I could only, I could only stand by the bed and then I had to go out because I found it that hard to, to see Dan lying there like that. [My husband] didn't. He, he, he was hands on, loving him, kissing him. I couldn't. 

You said that intensive care's got better?

Mother' Absolutely. Yeah, Daniel's been in intensive care 3 or 4 times since he was born and now I can go in and I can hold his hand and I can talk to him but not as much as my [my husband]. And I can't stay there for as long as [my husband] because I feel like it's totally out of my control and I don't like the wires and I don't like the monitors. He doesn't, he sees past, [my husband] sees past all that.

 

Surprised to find how calm and reassuring everything was on the PICU. Regretted not having...

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Age at interview: 4
Sex: Male
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Father:  Well, again we went into the intensive care room, sat in there and waited and they were sorting him out with his tubes and getting him all dressed and sort of tidied up, tidied up I guess. So we probably sat there for best part of half an hour I guess, wasn't it?  [Mother: Hmm, yeah].  Just waiting and, and then we went in and to be honest I mean it was really, really quite a relaxed room. [Mother:  Very] it was great really, great really and each patient's got an individual nurse and it was, it was really good, really good. I mean Jack was obviously totally spaced out, tubes coming out from just about everywhere, I guess.

Mother: But he had...

Father: He had bits up his nose, down his throat.

Mother: He was on a ventilator which we'd been told from the word go that he would be and of course you say 'ventilator' and to me, I think with you as well you think 'That's helping him breathe, that's helping him live' [Father:  Yeah]. It was helping him breathe but it was, it was sort of doing that bit so that his body could start mending the other bits. It was just to help along a little bit and it's, it's a necessity. But it's not because he's dying. [Father:  No].

Father: It was because he was so dosed up as well wasn't it?

Mother: Yes. Yes.  So that looked a bit horrible. He looked very pale...

Father: Yeah, and he had the lines into his neck as well which I, yeah, I, [my wife] came over a bit funny then and had to sit back for a while and I was surprised because I could handle that. I mean, [Mother: Yeah] I was absolutely fine because to, to me I was on the other side and we could start sort of doing things and [Mother: We'd got through it] sorting it out and we, you know, we were really through. As far as I was concerned it was just a case sorting him out and getting better.

Mother: Having not been to see intensive care beforehand [Father: Yeah] was that OK?

Father: It was because I mean again I'm, I was, I was pretty dreadful, not willing to face up to anything and I, and I, before I thought 'Right, I'll face intensive care when I have to. It's just another thing that if I see it now it might freak me out, so I don't want to know'. And in the end, to be honest, if I had gone and seen it beforehand I would have been pretty relaxed with it anyway.

Mother: I think ...

Father: And possibly, possibly I should have really to be honest.

Mother: But PICU, for the children's intensive care I think is very different from an adult intensive care [Father: Yeah, yeah] and I myself had it in my head it would be like an adult intensive care and you see lots of, I don't know, I've never been into one, but imagine a lot poorly, poorly people in there and sort of road accident victims and things like that. This was little babies I think who'd been premature, there wasn't a little person in there who'd had a heart operation. There wasn't anything in there that was frightening so...
 
Father: And it was fairly well spaced out as well so I mean if there had of been something over there that wasn't very nice…
 
Mother: Very calm
 
Father: you…
 
Mother: Wouldn't know about it.
 
Father:  wouldn't have to look at it.
 
Mother: No.
 
Father: It would have been closed off. Absolutely no problem at all. If anything it was probably better than the wards, to be honest it's, it's probably nicer than the wards.
 

One mother described feeling cut off from her baby while he was in intensive care and said she coped by going home leaving the staff to look after him. Another mother recalled that although it was a shock to see her child attached to so many tubes and monitors she could ignore all the equipment and was just relieved that her daughter had survived the operation.

Parents whose children had several operations said seeing their child in intensive care was something they never got used to, they were upset each time. Some parents took photographs of their child in intensive care because they wanted to record what they'd been through and in some cases because they didn't know if their child would survive.

Several were surprised to find how calm and reassuring everything was on the paediatric intensive care unit. One couple mentioned how much better it was than they had imagined (see Interview 17). Some parents recalled that they were surprised how well their child looked. Many said the atmosphere had been bright and cheerful and the staff were always friendly and helpful (see 'Emergency surgery').

Some who had been there for a long time found they could laugh and joke with the staff. Parents felt that the staff were looking after them as much as they were looking after their child. Some parents had found it important to get breaks from the environment every now and again. Others didn't want to leave their child.

Some mothers remembered feeling very helpless when their child was in intensive care because they felt there was little they could do to care for the child. Others recalled that although their child was attached to monitors they could feed, care and hold their child for a short time which had helped. Several told how the staff had encouraged them to become involved in looking after their child.

 

They were able to feed and care for their child when he was in intensive care. Staff were always...

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Age at interview: 4
Sex: Male
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The nurses there were absolutely fantastic and they understood, they understood that obviously there would, here were two parents, all the trauma that we'd been through, all the anxiety that we felt, and they were, and very, very willing to chat us, chat us through everything and tell us everything that was going on. I can't really remember us, too much being involved in the decision-making. They were telling us what was going on and I suppose if we were not happy with something then we could have spoken up. And we had, we had plenty of opportunity to speak up or to express our views. Doctors were always on hand. We didn't really have any concerns about, about the treatment once they were in there.

 

Were you able to take care of him in any way?

 

We were able, I remember being able to feed him and that was lovely. And I remember being able to lift him out and to hold him although he was all wired up and it was a job to lift him up and keep all the wires in place that they didn't end becoming disconnected. We were able to do that. They were, they were, they were very good actually at getting us back involved in looking after him. They encouraged that a lot. Which was brilliant because that was what I wanted to do. And so we were able to comb his hair and just to wash his little face. Yes, yes we did.

 

Every day was another achievement and as their child was beginning to recover another machine was taken off. Some children had moved off intensive care within 24 hours, others left after three or four days, or a week. A few took longer to recover.

A mother whose son had had several operations said it got harder as he got older, because he was more aware of the environment he was in, and that upset him.

After heart surgery children are attached to a ventilator. This is a machine that helps breathing by pumping air into a tube placed in the windpipe, either through the mouth or nose. Children are gradually weaned off the ventilator when they can breathe naturally. In some cases this had taken several attempts. One mother remembered some very hopeful moments and then real lows when it took several times for her baby to come off the ventilator before a slow weaning process was successful.

One mother remembers her distress when her child had pulled the ventilator out herself a few hours after surgery, but she had been able to breathe naturally. Another mother describes her daughter's slow recovery in intensive care and how she finally came off the ventilator.

 
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Describes her daughter's slow recovery in intensive care and how she finally came off the...

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Age at interview: 3
Sex: Male
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She was in Intensive Care for almost a week which is quite a long time to be Intensive Care. She was a baby that took a long time to recover from the operation. But that doesn't mean, as the doctors explained, it doesn't mean that they are not going to recover. It means that they, they, the body's taking a steady recovery. And actually, as it, as it happened she recovered extremely well but she did it slowly.

Her chest was kept open for two days after the operation, which doesn't mean it was literally open, the skin was sown and she had a bandage.  And it, it just meant that she was kept absolutely still and sedated. When her heart had recovered enough and her heart had reduced in size they came to the Intensive Care Unit and they didn't take her back to theatre, they closed her chest then. And from then on she gradually got stronger but it wasn't until five days after the operation that she, that she actually came out of sedation. She was in for a long time. They did it very slowly and I was, I thought it was going to be very frightening. And what happened was that the, the frightening bit, they gradually start to breath on their own, all these babies. There were lots of babies there. And they don't suddenly turn the machine off, the ventilator, they allow the child to breathe on their own gradually until they are actually breathing on their own. The worst bit is removing the tube.

Now we used to have about 6 or 7 hours sleep and we used to come onto the ward at 7 o'clock in the morning and they removed the tube at about 6.30 before we got there and it was great, it was great. Because it was done, she was breathing, she was still very still and she was immobilized. She doesn't just have sedation. You're immobilize as well because obviously it would be very dangerous to move at that point. But that was gradually wearing off and although she was still under sedation and asleep she was starting to move and we would just see flickers, flickers of fingers.  

Sometimes postoperative complications can delay a child's recovery. Fluid collects around the heart after heart surgery and drainage tubes are used to remove it. In some cases, fluid took longer to disappear (see 'Moving to the ward'). One couple describes the scares they had with their baby when he was in intensive care after two of his operations.

 

Describes the post-op complications their baby had when he was in intensive care after two of his...

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Age at interview: 3
Sex: Male
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Mother' And he had, he had a pericardial infusion and they put a line in to drain the fluid away from the heart and the line, they, they thought that, they think what caused it is, that it was actually irritating the heart so his blood pressure just started to, to crash and they didn't know what was causing it. Anyway they, they pulled the line out quick and fortunately they think that was what was causing the problem and [Father' stable] he then stabilised again but at that time I was, it was in the middle of the night, wasn't it? And I was at the hospital accommodation and came over and I didn't go in, I waited outside and they stabilised him. But I had to phone [my husband] and then there was, after he'd had the surgery in September - that was when he had the shunt done wasn't it? [Father' Hmm] - and then in the December when he was in having surgery again, he'd, he'd had surgery and he, he'd come out of surgery and he was back on intensive care and he was on the ventilator. We'd been to see him and he was stable and they were happy with him and so we'd gone down to have a bite to eat in the canteen and 10 minutes later we got a phone call to tell us to go back up to intensive care and that he'd gone into cardiac arrest. And we'd only seen him 10 minutes before and he was OK and on that occasion his, they, they said that they thought that he'd possibly, possibly been over-ventilated, [Father' Hmm] was it? And they brought him back and he was all right. But that just, it just makes you realise how unpredictable it can be. You know.


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Last reviewed July 2018.

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