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Parents of children with congenital heart disease

A child's development

Some children with congenital heart disease, in and out of hospital for their first few years of life for various operations, may have development problems. Delays may occur in growth, language development and motor skills (sitting, crawling, walking). Some children with a heart condition, for example 22q11, Di George Syndrome have other health problems which can cause developmental delay.

 

Her two year old loves going to nursery and his development has progressed since attending nursery.

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Age at interview: 2
Sex: Male
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Yeah, but he loves it, he absolutely loves it. I felt really bad at first taking him. I thought, 'Oh' you know 'I can't really do this to my child'. But he absolutely loves it. He just 'Bye'. He doesn't give a monkey's, he absolutely loves it. And, yeah, he's doing ever such a lot more, you know, when he's playing. Like before he used to just play with the same old toys over and over again but now he gets the cars out and 'brmm, brmmm' and it's just loads of little things. And he's, and he's always in the garden and digging and stuff and he never did that before. And, you know, he's obviously watched all the other kids do it and you know he's really catching up now. He does, he does loads of little things that he never did before and, you know, and it's given me a bit of time as well. Because I think it's, and I'm sure that other mums have said this to you but you feel really bad about taking them to nursery because they have got problems and you should be looking after them but you've got to remember that if you don't have a break and have some time for yourself it just consumes you, it really does, and that's not healthy for anyone. You know, and plus it's good for Joe, he doesn't want to be stuck at home with boring old mum all the time does he? You know, he doesn't want, he's probably bored stiff with me all the time. He loves going out with his mates and going off to nursery.

And physically is he any different ?

Physically I've noticed that Joe is different from other two year old's, I have noticed that. And I have noticed that since he was born, that he is different from his peers. And at first that was really, really hard to take on board that was. It used to really upset me. And people always think that he's a lot younger than he really is. And he's a lot smaller than other children of his age and he doesn't do half the things that other children of his age do and a lot of that is because he was poorly and a lot of it's to do with his other problems. But physically, he is different from other kids but that's OK, that's just Joe. You know, he's lovely. And everybody loves him, they do. Everyone that knows him really loves him because he's such a character. He really is and everyone's really fond of him. But since he's been going to nursery physically I suppose he's more active, yeah, a lot more active. And he's walking a lot now but he didn't walk when he went to nursery. He was two and he still didn't walk when he went to nursery. 

Many of the parents of nursery or school age children however said there were no signs of developmental delay. One mother whose daughter had three operations by the time she was two and a half, stresses that it had not affected her development. She can do all the things other children her age can do. Another couple said their toddler had passed all her milestones.

 

Her 3 year old daughter's operations had not delayed her development and she is able to do what...

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Age at interview: 3
Sex: Male
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But she goes to lots of things with lots of other children. She goes to various cr'ches associated with the church and things and she's got lots of little friends her age and she does all the same stuff as them. Parents, especially after operations, say 'oh you will be careful with my child because they're so rough and I don't want them to hurt her' and it's not been an issue at all. I can imagine with a very active child it would be because they would be much more likely to hurt themselves after the operation.  

But it's a very short period of time that you have to be careful anyway and even then the instructions that you are given about what to avoid and what to be careful of, people are very realistic about what toddlers get up to. And it has not stopped Miriam doing a thing, I shouldn't have thought, nothing. She's just done the normal things, I don't think it's held her up.

Some children were late reaching their development milestones. One mother, who was very worried about her son's late development when he was a baby, said that he was now a normal seven-year-old and doing well at school. Another said her 2-year-old son's development had been delayed during the first year when he was in and out of hospital, but that since going to nursery he was catching up (see Interview 05).

 

When her son was a baby he was late to reach all his milestones but there had been no long term...

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Age at interview: 7
Sex: Male
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His developments was always a little bit on the slow side. He was late to reach all the milestones. And I found that incredibly worrying at the time. He was my first baby, I had nothing to, I had nothing, no nothing to mark, mark the standards by and therefore I read all the books and if he wasn't doing something by the end of the, the end of the stage that they gave you I would start to worry and think something was wrong.

And this was always the way. He was late to sit up, he was late to walk, he was late to crawl, everything. Everything was late. And I convinced myself that there was something dreadfully wrong. I went through the, 'Oh he's, he's dyslexic, he's autistic'. I, I put myself through, through agonies convinced that he's got brain damage from the operation. I was convinced something was wrong. As it turned out nothing's wrong, he a, he's a perfectly wonderful, normal, bright boy and he's doing wonderfully well at school. And so I put myself through all those agonies for nothing.

He's form captain for his class for this year, which is really nice, gives him a bit of responsibility. The teachers say he's doing really well. He keeps up well with his school work. He's a bright boy and he's very happy. He's got, he's got good friends and he enjoys school, which is wonderful.

Some children showing delay require special help. One three-year-old, who had started walking when he was one but was not yet speaking, attended a special needs nursery. Another three-year-old boy was having speech therapy.

One couple describe how they arranged various forms of support, including a physiotherapist, a play therapist and regular visits to a paediatrician, to help and monitor the development of their 15-month-old daughter who had had a stroke.

 

Their 15 month year old daughter sees a physiotherapist and a play therapist and is monitored by...

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Mother' I mean the other thing that I've felt I've really pushed for my daughter and it's not, it's not really because she had the stroke it's more about the fact that she'd been in hospital so her muscles are weaker and she's had all the surgery across her chest so, you know, they expect her development to be a little bit behind but she's under a paediatrician just to assess her development regularly because I was frightened that she'd get to maybe a couple of years old and then they'd realise that maybe something's not as should it be and then it's harder to put it right then

How did you find out about setting that up? How did you know about it?

Mother' Well, I asked my Health Visitor because when she went to see the doctors and that they just said 'Is anyone assessing her development?' and I said 'No'.  I mean she had her normal checks with my Health Visitor at 6 and 9 months and things like that and like, you know, little hearing tests and that they do but then I don't feel they're adequate for a child that's been very poorly. I mean she was having a physio as well, that was from the neurology side of things.  

Father' You see, the, the problem is they spend that much time in hospital that walking and crawling and, and even sitting up...

Mother' is delayed. 

Father' Is delayed because, because they spend most of the time lying down. I mean, [our daughter] my daughter was assessed a couple of weeks and although she was sort of behind in, I mean she wasn't crawling at the time but she is now, she's not walking although she's 15 months. But, you know, she's behind in that respect, socially she's not. She's quite, they said she's doing quite well, isn't she? She's sort of doing things like that an 18 month old should be doing.

Mother' But it wasn't the actual Health Visitor that organised that because I asked her about it and she organised it, didn't she? And she's also organised somebody to come into the house and do play work with my daughter. And she's going to come in once a week and just do learn through play.

Some CHD babies are much smaller than other children of their age. One mother whose son has bradycardia, and was always small as a toddler commented that now, at the age of seven, he was one of the tallest in the class. Not all CHD babies are small. One couple said their five-year-old daughter wears clothes for 8 to 9-year-olds.

 

Her son was always much smaller when he was a baby and infant but now at the age of 7 he is one...

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Age at interview: 7
Sex: Male
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One of the other aspects of cardiac babies that I was told by a senior registrar 'en passant' was that they often are very small and don't grow for a long time. But that I shouldn't worry about that, that it would all right it's self sort of by 3 or 4 years. And again you didn't, I didn't want to hear that at that time. But he stayed in baby grows for age 3 months until he was a good 6 months and in the 6 month ones until he was a year and he was always small. And it's only now that he's turned, just turned 7 that he's in the taller part of the class. So he was always in the 25th percentile or smaller and it was only when he sort of turned 3 or 4 that I remembered what that senior registrar had said. And took comfort in the fact that in time he'd just be normal.  

So whereas everybody was saying 'Oh, at two he's this height and therefore he'll only be 5' 7 when he's an adult and I kept thinking 'No, it's not going to work for him'. And now he's tall and we'll have to see.

Sometimes nurseries or schools hesitate to take responsibility for a child with CHD. One mother said the nursery was at first reluctant to take her son when he had not yet had treatment, but she had visited them, sent them a letter from the consultant and had given them written notes about her son's condition. They agreed a contract where they only paid for the days that her son was at nursery because he was often off sick.

 
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She gave the nursery an information pack which she had compiled about her son's heart condition...

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I think the things that I do now is kind of have a standard almost pack on information so I've got three sheets on the computer about [our son], his health, contacts, professionals that the person can get in touch with. I put in leaflets that I think might be helpful for them to read like the Children's Heart Booklet, things on feeding. He doesn't really need that now but I did do that at an earlier stage.

All of the emergency contact numbers, just simple things like signs and symptoms. '[our son] is ill if,' and then a list of bullet points. '[our son] is not ill if he goes blue, that's normal for [our son],' and just simple things like that, that you know somebody just wouldn't know if they hadn't you know looked after a child with this condition.

Another mother decided not to tell the playgroup about her child's heart defect because she didn't want her to be treated any differently. Many had found that the nursery or play group were happy to take their child.

 

She didn't tell the playgroup that her daughter has a heart condition because she didn't want...

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Age at interview: 3
Sex: Male
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And then we were given monthly appointments, which was a big step and from that point really everything has been as normal, as with any other child. You know, the operation period of about a month was, was very, very, very difficult but when it comes to Alex's physical needs she's just like any other child. Apart from the fact that she has got a heart condition that will need long term monitoring and treatment. When it comes to day to day feeding, growing, playing, moving she's just like any other child. She's now at playgroup and playgroup do not know that she has a heart condition. This is a very conscious decision of mine that I don't want her to be labelled as, 'the heart child' because people don't really understand very well what a heart child is these days. I think they tend to think that a lot of heart children sit in the corner, can't do P.E. and have blue lips all the time. That isn't the case with all heart children. In fact a lot of them lead perfectly normal lives. I don't want people to treat her any differently. That's a desperate need of mine.

Parents commented that their children got on very well at nursery. Although some mothers had been anxious, their children thoroughly enjoyed it and they had made good progress (see Interview 05). One mother said her son could join in most games but would stop if he was tired and seemed to know his own limitations. Having a pacemaker had not restricted one four-year-old girl at nursery.

One mother who chose to return to work after nine months, before her son had any treatment, mentioned that she is very glad she did. Her son loves the nursery and being with other children. One mother explains that it took a bit of time to build up her son's confidence to be at nursery without her, but now he is happy to be left there and he enjoys it.

 

It took a bit of time to build up her son's confidence to be at nursery without his mum but now...

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Age at interview: 5
Sex: Male
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He actually got on fine. He quite enjoyed the idea that he had other children to play with because like I say he's with us all the time. His big sister's like eight years of difference so it was, it was a whole new experience. This place where there was so many toys, so many other children he got on with most of them. I mean, there are, obviously you are going to have clashes with, with some people, typical nursery but he did enjoy it. He enjoyed the stories because we, we started him from very young giving him a bedtime story so he knew about sitting and listening. He enjoyed playing with different toys that he's never seen before. As I say, the only thing, with children like that who go through those kind of things you have to build their confidence and that's basically what it is, it's confidence building. And when they're confident enough, you can leave them. So that's what I was doing the first year, I was building his confidence. And it did work because I mean the first two or three days he was like keeping a hold of my trousers. You know, he was, he was clinging and I had to go everywhere that he went but as the time went on I could get further and further away like, where I would go and sit down and it was like what he was doing, he was coming for reassurance. He knew I was sitting there, he would go away and play and then sometimes he'd come back and say 'See what I've done mum'. So it was like he was getting reassurance that, yeah, he could go and play and I would still be there until it got to the bit that I managed to eventually, I can leave him now. But you do have to build their confidence they've, they kind of lose trust in people when they go into hospital because there's that much different people roundabout them and so much stuff getting done to them that they do lose that. So you've got to be there to rebuild that. And if you can just take your time it helps, it works.

Another said that although nursery opens her daughter up to more infections she seems very robust and not too badly affected by them. One child's nursery had a policy of not administering medicines so her mother had asked the doctor to change her child's medication to twice daily to fit in with this.

One mum whose child went to nursery with an NG tube and needed to go to bed in the afternoon, said both the nursery and the school had been very accommodating and that the other children were very accepting. She describes how he got on.

 

Her son had a one-to-one helper at school and when he went to school with his NG tube the other...

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Luke went to a mainstream nursery and they were very good with Luke's needs. They treated him as best they could as a healthy child but taking into considering, consideration his health. He also went to a mainstream school where he had a one-to-one helper and they was brilliant, they was very understanding, nothing was too much trouble. In fact he used to go to bed in the afternoon because he was tired. But rather than him getting into a routine of him coming home he used to go on a little bed. He just used to say 'I'm really tired' or 'Can I go to sleep?' and he'd potter off and get on the bed. And it wasn't a problem. They knew, and the other children just totally accepted 'Oh is Luke tired? Oh he's gone to bed. Oh, OK'. And that was it. So everybody has been really helpful, friendly. 

They was very helpful, very supportive and Luke loved going to nursery. He was and the kids were really good. Luke went with NG tubes and it wasn't a problem. It was like 'Oh what's Luke got up his nose?' 'Oh it's to help him feed because he doesn't eat his dinner'. 'Oh you ought to eat your dinner, Luke'. And they moved on and they never, he's just, children just accept things the way they are. They ask questions, as long as they're told the basics that's all they need to know.

Hmm.  

And then Luke started school just after his fourth birthday and he started full time into a mainstream school and he loved it. He wasn't the brainiest of children but he loved it. He did do really well. He came on, he blossomed really. He was in the school Christmas play. His confidence grew. He was very, he wasn't shy that he wouldn't speak. He just didn't, he lacked confidence. And his confidence really came on. He had one-to-one help with the physical side of things mainly. The stairs, things like that. There wasn't any steps other than the steps to go outside but like, children lining up in a queue to go into assembly or for lunch, children push. Luke's balance was very poor so Luke would have been pushed over. So he had one-to-one care for all his time at school. And he needed help, he had concentration problems a well. Luke needed like 'Come on Luke, you need to do this' or to keep bringing him back to him. But there was times when he sat on his hands and said he couldn't use a pencil because he'd got no hands. And it was because he, he found gripping a pencil difficult. So they used to make exceptions and give him a big chunky crayon rather than a slim pencil.

But he was included in as much as his ability would allow him. The same as the other children. He joined in with everything. There was nothing that he didn't join in. He did join in with everything.    

Children get on well at school. Parents had made the school aware of their child's health problems. Some parents were concerned their child would be tired and not able to join in. But generally this was not the case. The mother of an 8-year-old boy with hypertrophic cardiomyopathy said about school sports and PE, that it was very hard to limit his exercise if he was feeling OK (see 'How it affects daily life' and 'Coping').

 

Her son is getting on very well at school and enjoying it.

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Age at interview: 4
Sex: Male
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Yes, well. He's at school. He's an extremely outgoing, friendly boy. If we're on holiday, he is the one who's going to make new friends because he just goes hurdling head first into a situation. He's enjoying school. He's coping well. I thought that he'd be worn out, he'd be having a sleep in the classroom. These were things I was concerned about. But I'd been up to the playground many a time to watch him. He's hurdling around the playground like anybody else.  

 

The staff are all aware of him. They've all been told like to keep an extra eye on him. If he has a fall or anything they go and help him and he says, 'oh no go away, I'm Ok'. He doesn't like to be over fussed. He's just, he's just adorable. He really is and he's very precious.  


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Last reviewed July 2018.

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