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Parents of children with congenital heart disease

How having a child with congenital heart disease affects daily life

When their child is diagnosed with congenital heart disease, parents may worry about how their daily life will be affected, whether they will be able to go on holidays and how their work will be affected. Here, parents talk about the impact on daily life during their child's early childhood.

All parents said their daily life had changed in some ways, but for several this had only been around the time of their child's operations and they said that life was now normal. One mother said that their 3-year-old's heart condition did not affect their daily life but she did worry about her.

 

Describes the temporary impact on their daily life around the time of their daughter's operation...

Describes the temporary impact on their daily life around the time of their daughter's operation...

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OK. And, has there been any impact on your daily life, your family life?

Mother' I mean obviously there was, you know, around the time of the operation we felt we couldn't plan. Leading up to it we didn't know when it was going to be, it kept being cancelled and we felt you couldn't plan things and I, certainly, work-wise I took on different, I mean I worked a lot less, you know, and, and didn't take on work because I wasn't sure about what, you know, what was going to happen.

And obviously afterwards when she was poorly and needed me around a lot that's, that, you know, it obviously did have an impact then. But not, not now it doesn't, no. I mean, I don't think we would treat her any differently from... Obviously having children has an impact on your daily life but it's no, no different from having two young children, no. We don't treat her in any different way now.

 

Their daughter's truncus arteriosus does not have any practical impact on their daily life.

Their daughter's truncus arteriosus does not have any practical impact on their daily life.

Age at interview: 3
Sex: Male
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Alex's heart condition does not impact on our daily life apart from the fact that we have to give her powdered capsules. I'm very, very lucky to be able to say that it doesn't impact on our lives at all. We're very lucky because of the way she recovered from the operation. The operation was very successful and she's doing very well.  

The way we understand it is that we've got to look at it as she has a normal life and she will have normal health but she will have to have operations throughout her life. We don't know how many or when, we can't tell. Hopefully not too, not many at all. And so it's the psychological burden that you have to carry from day to day. And not the practical burden apart from the fact that the operations will obviously impact.

And what's the psychological burden?

Worrying about it. Just, it's worrying about it. 

Frequent hospital visits are usual. One couple whose son had four operations in his first ten months of life had not realised how much this would affect their life. They said that had they not been living close to the hospital where their son received treatment, they would have needed to move house.

 

Describes impact on their home life when their son was in hospital and later having to make...

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Age at interview: 3
Sex: Male
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Mother' The other thing is as well that at the time we would have chosen to have him treated wherever we thought he was going to receive the best treatment and as it was we chose our, our home town. But if we'd have thought he'd got better treatment elsewhere we would have gone elsewhere but I don't think we actually realised that at the time that if we'd have chosen to have him treated away from home the impact that that would have had on our home life because for 10 months we were in and out of hospital all the time and it did cause disruption.

Father' You were resident weren't you?

Mother' I mean I was living there, but because we were only living 10 minutes away from the hospital the children were still, our other children were still able to visit us and they were still able to have their tea with us sometimes and we were still able to do their homework with them. But if we'd been in any other city we'd have, I suppose we'd have had to have coped but the effect that it would have had on your home life would have just been phenomenal. And although Felix is doing well at the moment you are still backwards and forwards to Warfarin clinic and you are still backwards and forwards for hospital appointments and really it just wouldn't have been practical. I think that we'd have, if he'd have been  being treated at another hospital long term we'd have had to have seriously considered moving nearer to, to where he was being.

Frequent hospital appointments can mean time off work. Many employers were very accommodating and had told them to take as much time as they needed after diagnosis, for hospital appointments or during operations. One father had been able to take one month off work when his baby had his operation. However, others said that they had to take holiday or unpaid leave for the times their child was in hospital. One mother had to take holiday leave when her son was having his operation and make up her hours. She advises other parents who have similar problems to get a certificate from their GP.

 

He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her...

He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her...

Age at interview: 3
Sex: Male
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One of the problems is that when he had to take to time off his employer gave him paid leave to start with but now with, with appointments and things we're worrying all the time. He has to take holiday time which of course means that we can't have as many holidays together. We've got to come to an arrangement when she is hospitalized again but, so that is another thing. I find it easier being part-time but I've got another child as well which is hard to, hard work to organise. But I am aware that you can have 14 weeks unpaid parental leave. Now that didn't come in for Alex, she's too old for that but the second child we had, actually we can use his time for her which seems a bit crazy really but if we're stuck that's what we're going to have to do. We're going have to take unpaid leave. Which is another thing we don't need but we've got to be there for her and probably I'm going to cut back on my work whereas perhaps I might of taken another route with my career. My career's definitely secondary now to hospital appointments. 
 

She had to take holiday leave when her son was having his operation and make up her hours and...

She had to take holiday leave when her son was having his operation and make up her hours and...

Age at interview: 3
Sex: Male
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Mother' And when I, when I say to people now that you know the time I had off with Toby for his operation and afterwards, I had to take as holiday, their jaws just hit the floor, you know. Not only did I have to take it as holiday, I had to make up teaching hours for the year. Ha. It was just like, it's a shame I can't say the name. 

Father' Yeah well, you can't, you can't [laugh].

Mother' But isn't that incredible? I mean at the time, when I went into see the personnel office with my boss, and he said, oh well, we're prepared to give you two weeks holiday and then we'll give you unpaid leave. You just don't argue because you're mind isn't on the logistics of you know, OK I'm gonna have to make up teaching hours or you know, or whatever. You're almost not there, you, you're back with your son at the hospital or whatever. If he'd said to you, OK you can take the time off but I'm gonna cut your arm off when you come back. You would've just said yes because you weren't really thinking about it and you know, in hind sight, if I'd just gone to my doctor and said how can I possibly be expected to work through during this period while my son's in hospital. The doctor would have said, you know, here's a certificate for as long as you like. And when, after the operation when we thought Toby was gonna have to go back in because of the fluid round his heart I went and got a certificate and he didn't have to go back in then but...

That's probably something I'd you know, if parents are having trouble with employers, I'm sure a GP's, I mean what GP wouldn't sign you off? for something like that.

Some mothers took extended maternity leave or had not planned to return to work after the birth of their child. A few had returned to work. One mother said her career plans had changed (see Interview 04). Another returned to work part time when her son was six months old and explains that it had been good for both of them.

 

She returned to work part time when her son was six months old and explains that it had been good...

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Age at interview: 4
Sex: Male
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And [um] when he was about 6 months old, I decided to return to work, which a lot of people I think, thought I was mad and how could I possibly be returning to work. But it was just right, I just felt it was right and I went back to work on a part time basis. It was very, very hard. It was very, very hard decision because I had to put him with a childminder. But I just felt that being at home, I was just, I wasn't coping very well being at home, I was just too worried. I was wrapping him up in bubble wrap and I just needed to let go of my grip a little bit. So I did that and it was good, it was good for me and it was good for him as well. He was then mixing with other children and not being at home with mummy all the time [laughs]. So, it was very, it was very hard to find the right balance but I think we did.

Another mother found people didn't always understand the stress of caring for a sick child 24 hours a day, and describes how the family reacted to her decision to return to work. She encourages other working parents not to think that the only option is to give up work.

 

Felt people didn't understand the stress of caring for a sick child 24 hours a day & describes...

Felt people didn't understand the stress of caring for a sick child 24 hours a day & describes...

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I think that there was one time when [my husband's] father was quite explicit about what he thought I should be doing and said that and he said that you know 'a mother needs to be looking after her children, she needs to be at home and they need you, [your son] needs you at the moment.'

And I just sat down and sort of explained to him that I'd worked very hard for my career it was very important to me but also at that time [our son] wasn't sleeping at all and he'd been really ill for quite a long time, and I just actually broke it down and went through it with him.  And I said you know 'he's awake all night, I'm awake all night with him and then if I have him all day as well I can't just keep going twenty-four hours a day, non-stop, seven days a week.' And I think it just made him think about it a little bit and, and think about what the reality of it you know might be.

Because I think sometimes its really easy for people, including my parents sometimes you know, you know my mother makes comments about how often I cook or don't cook or whatever.  And, you know when they're, they're very seldom here to see what the reality of the situation is like for you and how you can manage to fit in all of these various things and its just understanding that really. 

And I think that, I think that the other thing is you know at a practical level not to underestimate you know the impact and the level of organisation that you might need.  And I'd say to you know parents who are working don't kind of just think that the only option is to give up, you know if may feel really hard at times to carry on if you're not sleeping and you're going to work and child care feels like a nightmare. But you know persevere with it and if one thing doesn't feel right you know don't carry on with it, you know try and pursue other things.

Sleepless nights were common. One mother said her daughter's sleeping pattern was disrupted every time she was in hospital and it was difficult to return it to normal. Babies slept in their parents' rooms or parents relied on a baby monitor for longer than they would normally have done.

Social life can be affected. While waiting for surgery, some parents felt they had to stay at home. It could be difficult to find people willing to look after their child, or they preferred not to leave them with others. One couple explain that before their baby had corrective surgery their daily life was more home based, but after surgery it had returned to normal.

 

Their daily life was more home based before their daughter had her corrective surgery but now...

Their daily life was more home based before their daughter had her corrective surgery but now...

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Mother' It's even going out for day trips, that was, we used to take her file, we had a file that we used to take everywhere with us, like a just in case if she needed anything so that we could have all your help, help line numbers and hospital numbers if you needed anything.

Father' But that was before the second operation.

Mother' Just a minor'

Father' Because we knew it was what was, she was high risk during that time so.

But now do you do that now?

Mother' No. No. Just take her anywhere. Don't do anything with her in '

Father' No, she'

So daily life now is quite normal?

Mother' Quite normal, I think in the beginning I was anticipating going back to work maybe part time which I'd put off because I didn't want to leave her and I wasn't happy about leaving her with anybody else. There were only one or two people that I ever left her with in between operations for short periods of time. But now she's had surgery we're quite happy leaving her and going out for days and just even sending her to grand parents and I think'

Father' Which we wouldn't do'

Mother' Which we wouldn't do'

Father'during the'

Mother' During the first year my mum and dad wouldn't, well it's not that they wouldn't look after her, they weren't confident to be looking after her by herself and she, since she's had surgery they've felt confident enough to have her and do sort of normal grandparent sort of things with, with the children.

So that first year in between surgeries, you didn't, you know, you didn't want to leave her with anybody. [Mother' Correct] What effect did that have on you as a couple, in terms of being able to go out?

Father' It didn't basically, not much

Mother' We didn't go out. I mean I think we weren't as bad as to say like we'd both stay in. And I used to say it, tell you to go out with things, with other people and we did go out separately or we'd go round to friends houses rather than go out sort of places and do things. And I think we had a lot more home focused life than we were used to. We wouldn't sort of pop down to the seaside for the day. Whereas we, we probably would of before. But we can, we can do things like that now.

Children with heart conditions can have frequent coughs and colds during the winter months, and this can stop parents taking their child out to social events or leaving him with others. One couple went to fewer community events because of their son's susceptibility to infections. A single mother didn't leave her son with anyone for the first two years and they went out less as a family because she didn't want to risk an infection.

 

Their involvement in community life has decreased because their son was often ill and was...

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I think I mean the other things are that we just haven't been as mobile with [our son] as we were with [our daughter] so we have to really think about where we go on holiday and the time of the year and all of that.  And we just don't think about it, or didn't think about it with [our daughter]. Even we're part of quite an active kind of community, quite an active sort of social you know kind of stuff with weddings and festivals around Eid and friends who have things around the O... and stuff like that.  And I can honestly say that we've been to fewer things over the last sort of year and a half.  And you know there have been points when I see people and they say 'Gosh I haven't seen you for a year or whatever,' and that's because you know if [our son] is ill, you know I don't take him to crowded halls with two hundred or three hundred people because, you know my options are so much more limited as to what I can do with him and how he feels in that situation.
 

She didn't leave her son with anyone for the first two years and they went out less as a family...

She didn't leave her son with anyone for the first two years and they went out less as a family...

Age at interview: 3
Sex: Male
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But yeah, we did feel a bit isolated I think for a while and I think that was possibly when the other two missed out on things slightly because whereas I would have possibly taken them somewhere I didn't because I really didn't want to take Sam out in the cold and, you know, was concerned about him. And if anybody had a child and we were going to go and they were ill then I'm not going to risk it, you know. So, we did feel a bit isolated for, sometimes because just, I just did not want to take him out because, you know, he was so susceptible to things that I thought it was better to sort of keep him at home.

But now he's that bit older, a bit stronger really. We do go out quite a lot now and I do, my mum comes to baby-sit sometimes and, I mean, they love that and it does mean I can, you know, get out, just have a little bit of time to myself. But, yeah, you know, it was quite hard I suppose for the first, at least the first two years really. I, I didn't really leave them at all. I was sort, just wanted to be there, you know. I suppose also for the first sort of 7 or 8 months really he was so in and out of hospital I felt I wanted to make up that time. I mean his first Christmas he spent in hospital and you want to sort of make that time up. And Christmas this year is quite special.  It certainly was last year because it was the first Christmas that he'd been with us. We'd all been together for Christmas and that was great, you know. So, but no, certainly a lot easier now.

Parents had adapted their daily life to their child's heart condition. One couple whose child needed oxygen for the first four months of life insisted on getting small cylinders to use outside the house so that they could go out and about.

 

Their baby needed constant oxygen. It was made available all over their house and they insisted...

Their baby needed constant oxygen. It was made available all over their house and they insisted...

Age at interview: 3
Sex: Male
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Father' One of, one of the things in the early months of his life is that he was oxygen dependent and he came home on oxygen and that resulted in us having oxygen cylinders all over the house and eventually an oxygen machine so that we could pipe it round to whichever room. But one of the biggest things, which we thought we'd have problem with at first was having enough of the smaller cylinders so that could be mobile and go out and about and because of the amount of oxygen that he was on generally meant we would be going out for a few hours and he needed 2 or 3 of these small bottles to take out. And one of the first query from the local GP practice was well we might not get funding for prescriptions for that amount of oxygen. So that my initial reaction was well he's come out of hospital and now he's possibly going to be a prisoner in his own home because he can't get funding for oxygen cylinders to take him out and about. But anyway, after a few phone calls that was, there wasn't a problem because at that stage I think we were having  was it 10 cylinders, small cylinders delivered each? Was it more? 10 to 15 each week. So we could still go out and about because it was summer and we didn't want to be stuck in in the summer.

Mother' I mean what I would say is that for anybody that was faced with that situation prior to Felix being on oxygen I really thought that was one of the worst things that could happen. From a, a practical point of view really but once we were actually faced with it and we brought him home, I mean it was for four, was it four months? [Father' Hmm] It was actually very surprising how quickly you adapted. I mean once it was piped through the house it wasn't really a problem was it when we were in and because he was of an age where he wasn't mobile, he, he was quite good.  He didn't fiddle with them did he? too much and when, and when we went out we only ever had enough out with us for, was it six hours? [Father' Hmm]. 'Cos we'd take 3 cylinders 'cos he was on quite a high, a high amounts. You had to be sort of careful that you weren't too far away and that you had enough cylinders, but it didn't actually stop us doing anything did it? [Father' no].

Some parents had been on holiday abroad with their child. Others were hoping to when their child's condition allowed it. Travel insurance had not been a big problem - parents found they either had to pay extra to cover their child or look around a bit more for a company that would provide cover.

 

They have travelled abroad with their son and did not experience any problems getting travel...

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Age at interview: 4
Sex: Male
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Has your holiday insurance ever been difficult?

Mother' We have never had a problem at getting that. When we booked our holiday to Disney, we just, we just had to take out, out some extra cover to cover him for that and we had a letter from the consultant to say that Matthew was safe to travel and there was no worries that he'd have corrective surgery and so we just had to have a letter to go with that. We just recently taken out annual travel insurance, and again we've told them everything that there is to know and I think we had to pay I don't know, about an extra 20 or 30 pounds to get some cover on there. So we've never had a problem with that.  

So your holidays haven't really ever been effected in terms of where you can go?

Mother' No, we've been to Ibiza, Majorca,  We've been to Abu Dhabi. We've been to Dubai and we've been to America because we can't, can't live in fear of not doing things, we just have to carry on as normal and try and live a normal family life for everybody's sake. It's not always easy, but we do, we try to.  

 

Have had UK holidays and plan to travel abroad when their daughter's complex heart condition will...

Have had UK holidays and plan to travel abroad when their daughter's complex heart condition will...

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Mother' And then we come home and within a week we went on holiday didn't we? We asked them if we could take her away and they said yes, so we did. Maybe not everybody would choose to do that. Maybe they'd be a bit frightened by it but we had a lovely time and it was just what we all needed. I think we just needed to do it as a family. It was lovely. 

Father' But as I said earlier you sort of get used to your daughter's condition and you find it easier, you, you know yourself when she's not 100%, so you sort of deal with it anyway. So sort of, I mean going away to somewhere in this, this I mean in this country wasn't, although the first time we did it, it was a big, big thing. You know it was a bit daunting because we weren't at the hospital, we weren't close to the hospital that we were used to, and things like that. 

Mother' And the night before I'd convinced myself that she wasn't well. Didn't I?

Father'Yeah you had so we had to take her to A&E just to get her checked over. But it was just peace of mind, and, and once you'd got that peace of mind you, you're OK again. But now we sort of we don't, we don't sort of think about you know, is she going to be ill?

You know, OK, let's book this holiday. And if she's ill we cancel. If it costs, it costs. But I don't think you can sort of live your life thinking what will happen what, what happen, what, what if, what if? You know you've got to sort of get on and try and be as normal as you possibly can. Which is what we do.  

Mother' A lot of parents that I've spoken to that have got heart children they have all said that that's the only problem, that they found they couldn't plan things or if you are going to plan things, expect, if you get there, well brilliant, if you don't try not to beat yourself up over it. You know these things happen. 

Father' Just try again.

Mother' And our next goal is to go abroad with her. And every time we go we ask don't we, can we take her abroad now? And they kept saying, after her second stage. So when they told us they didn't think they? was going to do it, it was like that was what upset me more than, as well as the fact that she'd got to go through extra surgery, but you know, we'd set our hearts on getting her abroad, and then we thought we'd have to wait another 12 months, and now, they gave us the all clear to take her away so we booked up to go away next year, and hopefully we are going in January as well aren't we?

Dealing with stranger's comments while on holiday had been difficult for a few parents. One couple describes their feelings when people at the swimming pool stared at the scar on their daughter's chest.

 

Describes their feelings when people stared at their daughters scar on her chest while she was at...

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Father' It's, it's like we went to, on holiday, and we had a lovely hot day so we took the kids out into the outdoor pool so my son was jumping and swimming around wasn't he, enjoying himself? But the water was too cold for me daughter so we got like a bowl and filled it with sort of lukewarm water and sat her in it in her bikini bottom, but obviously she's got a big scar down the  front of her chest, and although you know we're sort of bringing her up, we'll bring her up to be proud of that, because it's kept her here, kept her here with us, and although we're not, you're not ashamed of it, you know we would never try and cover it up, and we never have, since she's been born. And people look sort of, took a second look again, and you know they're going to look so you sort of get used to it. But you can see 'em looking and sort of saying, "I wonder what that is?", and you're just waiting for them to come over and ask. Although they never will because they don't know you. And they don't know how you'd react. Although I'd just say it's a scar because she's had a heart operation. You sort of, you do get hardened to it and you can understand because if, if, if you stopped and thought about it and put yourself in that position you'd, you'd find yourself staring yourself. I think. Well I would, I know I would and I, and I know you'd probably after you'd come away you'd discuss the fact, "I wonder what was wrong with that child, with the scar down her front or on her back?" Or wherever, 'cause you do.

Mother' But a lot of heart parents have told me that they found that difficult with because like when they've taken the children abroad people have been blatantly rude, you know staring at the children. And as the children are getting older you don't want them to have a problem with the scar. And one mum that I spoke to she was really upset by that. And she says to me that you know that's something that you are going to have to get used to, people, are rude.

Some children's heart conditions had more impact on the family's daily life, and for longer, than others. However several parents stressed that despite these changes they did not hinder them too much and they had a good life. One father said that when they were in hospital they did not believe life would ever be normal, and now it was.

 

Daily life involves many hospital appointments but doesn't hinder the quality of their family's...

Daily life involves many hospital appointments but doesn't hinder the quality of their family's...

Age at interview: 2
Sex: Male
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Yeah, I think the one thing that, I remember when Joe was born and the Health Visitor came to see me for the first time and she said that, you know, you have to get used to the fact that from now on this is what your life's going to be like. Oh god I could of slung her out the front door I was so angry with her. You know, I thought 'How does she know? Of course this is not what my life is going to be like'. But looking back what she said was really poignant because it is what our life's about now and, you know, and, and our life does involve Joe having to go to the hospital, not just for his heart but for his other problems. You know, and Joe's got a lot of problems that he has to see a lot of different professionals about. You know, and a lot of my life is going to this place, that place and the other and, you know, we do have to work round that.  

But even though that's the case and that's what our life's like now I wouldn't say that's really, really hard or really, really bad or, you know, it's just part of our life. We don't even think about it any more, we just do it, we just get on with it. You know, I've, I've got a really good life now.  I love my life and I live my life to the full and so do my children.  And part of that is having to go to the hospital and having to go and see professionals and, and having to do all the things we have to do with Joe. So it hasn't really hindered my life that much. 

Even though it's the hardest thing I've had to do in my life and it's the worst thing I've ever had to go through in my life, it has just changed my life, but for the better, you know.

I know what life's about now. You know, and Joe's just fantastic. He's just changed everybody who meets him, he changes their life, you know. And I think all of us as a family, you know, just have a much richer life now because of what we've been through with him. And, you know, he is a fantastically loving, wonderful, giving child.  He is, he's lovely. 
 

When you are in hospital you do not believe life will ever be normal but it can be.

When you are in hospital you do not believe life will ever be normal but it can be.

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And, and it's, the funny, the funny thing is when you, when you sort of in hospital and, and she's, she's, she's lying there with all, you know, on ITU and, and you think 'Oh God, just get her home, if she starts moaning or crying in the night I won't moan I promise, honest to God'. You do. And you do and you realise, and it don't matter what you say you will.  And you just, I mean we've laughed about it and we look at each other when you, I mean, 'cos she, she tends to wake up quite a lot, doesn't she?  And, and you just sort of shrug your shoulders and, it, maybe you're not as probably as het up as other parents would be but you do and, and I mean and she'll get into things now, now she's crawling and, you know, and sort of, you're like 'What are you doing?' sort of thing. And, and its like I say you come home and you do tend to forget. But it's nice. It is nice and there's nothing, there's nothing better than being at home, as I say. And sort of coming in from work and you've got your sort of, your children and your wife and, and just being a family and you never, at, at first when you're in hospital you never think, you never ever think that you're going to get there but you will, and you do.


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Last reviewed July 2018.

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