Interview CH06

Brief Outline: Their daughter was diagnosed with Hypoplastic Right Heart Syndrome, Tricuspid Valve, Coarctation of the Aorta, Transposition of the Great Arteries. Treatment: A banding operation at 22 hrs old, repeated at 1 week old. A cardiac catheter at 10 months and a CP shunt at 1 yr. Further palliative operations planned. Current medication: Phenoxybenzamine Hydrochloride.

Background: Baby's ago at interview: 15 months. Diagnosed during pregnancy (20 weeks). Parents' marital status: married. Occupation: Mother-Full time Mum, Father-Postman. Other children: one older child. The family live close by to a specialist hospital.

It was difficult during pregnancy for the doctors to give them a complete diagnosis of their baby's heart defects & it was hard to make a decision about termination when there was a possibility of corrective surgery.

I think the biggest thing for us was that every time we went to the hospital we was told well this is what we think is wrong.  Which I know must be very, very difficult because at the end of the day their scanning your baby through your tummy and it's very hard. And they told us what they thought was wrong. But unfortunately for our daughter that she couldn't have corrective surgery, our surgeon, her heart it just had to be palliated. But they still said to us, "Well we think this is the problem but you know we may be slightly not quite right and when she's born we may be able to correct her heart depending on how certain things are". So when we was given the option of termination that was always in the back of our minds. Well how could we consider terminating a baby when the baby could have corrective heart surgery and everything could be fine so we found that really, really hard.

So when they said to us well come back in four weeks and we may be able to tell you more when the baby's bigger. And you can always still decide to go down the termination route. Which I think deep down we would never have gone down that route.... 
 

They were worried that sufficient medical support might not be available when their baby was born but the birth had gone very smoothly.

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. 
 

Said he found it difficult to handle the situation or to talk to people it until their baby was born.

Mother'  And then they put us in touch with the Cardiac Liaison sister and she actually phoned me the day after and said about coming out to see us. And she came out to see us. And it was really upsetting. You didn't want to talk to her did you?

Father'  No I found it quite difficult to handle the situation simply because the child wasn't there and I just didn't feel in control which I like being. I sort of have to be in control sort of thing, but I found it very difficult to sort of handle that sort of situation when the child wasn't there. And I just sort of took a back seat. But I knew it was helping [my wife], I mean, I knew it was helping my wife, talking to other people, who were sort of in a similar situation, being with other parents who have been in our situation. But it wasn't helping me. But I knew I'd be OK as soon as, as the child arrived. I knew that as soon as my daughter arrived - I'd be fine.
 

Explain that some family and friends didn't understand the extent of their daughter's heart problem. Some people were afraid to ask.

Mother - I think initially a lot of the family didn't understand. We explained quite in depth didn't we and they didn't understand and I think sometimes we didn't really understand - but especially older people they didn't really understand the seriousness of it like certain members of my family, older generation, like they'd see something in the paper that was like a very mild problem and they'd say Oh look, you know, look, look, she's fine now. And I'd say well it's not the same. It's very different, and we got to the stage where we just didn't say, oh, lovely and we'd leave it at that. And even now sometimes I don't think people realise how serious her problems are. 

Father - I think the family do now.

Mother - Immediate family do. 

Father - Yes, But I think it's just sort of friends who we see but not a lot, I mean they're nice enough to ask but if you sort of say she's been in and out of surgery they say is that it then is she OK? And I think because they sort of think because it's been righted in that situation, then she's through the worst and that and you can't sort of explain to them that no she isn't. At this present moment in time, there's more to come. And, but that's just somebody else's problem if you know what I mean. They'll ask and say and you know their generally sort of interested but as soon as that's gone and something else happened, the problem's not there for them but it'll always be there for you sort of thing.

Mother - I think people don't know what, don't know how to approach you about it sometimes. I felt that some people completely avoided us. And some people didn't know whether to ring or write or they're frightened to ring in case something had happened. I found that people at the school used to cross over which I found really upsetting. 
 

Explains the difficulty finding relevant information about their daughter's complex heart condition.

I mean we've become members of Young at Heart. Which is like an organisation for this area, but we've found that with our daughter's problems there's a similar problem but on the opposite side, Left Heart Matters and I thought that's a support group for that particular problem, but when I asked them at the hospital what my daughter's condition - they couldn't give me one because she'd got quite a few, so it wasn't sort of she's got this and it's called this, and there's this help here and you know this booklet here, it was never like that. And then when we asked for a booklet, it was, they gave us about 4 or 5, and that was hard.  But apparently now the group that we asked about before they do actually cover my daughter's problem so that will be helpful. We've been in touch with them.

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

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?
 

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

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.
 

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

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.

Feels she missed out on the excitement she had felt after her first baby was born instead she was very tearful and low after her baby came home from hospital.

I mean the only other thing that I, I feel that maybe sort of mums should have a bit more time with is that I was really worried before I had her that I was going to get post-natal depression and don't ask me why, I just, I got paranoid about it, didn't I? Because I thought with, with everything that was going to happen, we knew about everything, you know, about all the surgery and how long she'd be in hospital, all this lot, and I just thought, ' it's going to have some effect, it's bound to'. I mean. I got so paranoid after that I'd convinced myself I'd, I'd probably got it but nobody seemed to think about me, do you know what I mean? That seemed to all be forgotten when you've had a baby, because you're in hospital, in a children's hospital, it's as though you haven't given birth and you lose out on all that, do you know what I mean? 'Cos, like with my son it was like, you know, you get pampered and everything like that and it was lovely. And it's all this sort of bubbly time and that and I had none of that when I had my daughter. It was, all seemed to be forgotten, wasn't it really?

And I was very tearful and, for a long time when she came home and, and I even got to the stage where I didn't want you to go out, did I?  I didn't want to be left on my own. For the, for a certain, not because I was frightened that something was going to happen to her but I just didn't want to be on my own. It was ever, ever so strange but I don't think, well it wasn't post-natal depression, I think it was just a bit down and a bit of delayed shock. But I think they should take care with some mums because it, you know, they could need the attention afterwards and it could get missed.

They describe some of the help available and advise others to ask for help if they need it.

Mother' Well, the problem, sorry, the problem we had is that because she was in hospital for quite a while there's, the money that you get through is just unbelievable. You get through a lot of money, your partner's not working, I couldn't go back to work anyway so finances are stretched and you find little snippets of things like there's you could have had, had like a social grant, '25 from the hospital which is like an emergency fund. We didn't know that was available to us the first time. Which would have just helped with buying something to eat in the restaurant and things like that or for my mum to get a taxi to pick [our son] my son up and things like that. And then there's like other, there's charities that you can apply to for help at home which we didn't know about. And, they're, they're out there but you've got to look for them yourself. I mean I've recently applied to a couple of charities - I mean you feel as though you're begging - but we've found we, that the year had been a struggle, haven't we, financially.   

I mean my mum and dad have sort of given us money for holidays and things like that but you know it's like they give you money for extra bedding if, because my daughter was very sickly and chesty with all her coughs and everything. And there's like a charity that gives you money for bedding and gives you money to go out and have days out, you know, they even bought us a tumble dryer which has been a godsend, you know, it's been brilliant. Things like that.

Father' And they give like I say they give you money for holidays and, and things like that because I suppose, they, this, the, once you sort of get used to earning so much as well and, and then all of a sudden, you see, because in my job I do a lot of sort of overtime so, your wage goes up and then when that stops because you're not at work, and although you don't think about money, you don't because it's not important, it's only when you sort of get home

Mother' Yeah

Father' And you sort of sitting and you're thinking, 'Oh look this bill', you know and...

Mother' Which one do I pay first.

Father' Which one do I pay first. Then you realise how much you have been hit. You don't, to be honest, you don't actually think about it in hospital. It's not an issue, it really isn't. It's when you come home and you've been home maybe a week or two and then you realise 'Hang on a minute, I need help here'. And there's, there's like, like my wife said, there's, there's people out there, there's charities and there's things out there that can help you that, that parents should know about and one way of finding out is to, is just to ask, ask whether it be the, the liaison sister. If she don't, she don't know she will find somebody who does.

Mother' Or like your social worker or you can actually get recommended for like holidays and things through your Health Visitor or the cardiac liaison sister or, you know, there's places that'll, that have caravans and, I mean, we've just applied for one that have got a caravan in Devon. So I know fortunately we are hopefully going to go abroad next year but you know, at least we'll be able to hopefully make use of the caravan and, and things like that. But, you know, it is there it's just knowing where to go.

Father' And you will need help.

Advises parents to talk to health professionals and other parents about the support that is available.

Father' And I think at, there's an awful lot that you can do for yourselves in respect that you can, you know, you can sit and talk and help each other through things.  But at the end of the day it's people who, who are qualified.  

Mother' Hmmm 

Father' And if you need more than just your partner, I think, you know, anybody whether it be your liaison sister, the cardiac liaison sister or a nurse, even a doctor, or the cardiologist themselves, they'll all take time. If there's anything you need explaining then they'll take time to do it. They will. If they, I mean if we ever had a problem we made it clear and that, they will tell you to do that as well. Make it clear that if you're not happy with something let us know so that we can do something about it. And they are, they are very good at, at sort of leading you up the right path, if you know what I mean. I mean, there's, there's a lot of things that you, after it, like, like the DLA and forms and things that, that you could be, they could help whether it be financially or, or just, you know, help you with the development of your child. That you should, that, you know, a lot of people don't know about. I mean, we didn't know about 'em, its' just that we've been fortunate enough that we spoke to other parents who have told us. 
 

Describe how once they gave their daughter the wrong medicine by mistake.

Mother' When she first came home from hospital, she was on a lot of medications for various different things to do with her heart problem. And it's a bit of a trauma at first isn't it. It's just like she was on six syringes in the morning, and in the afternoon, and teatime. It was like do this, do that and do the other. Which I didn't find  too bad, I mean, when she was a baby, she used to not like the syringes at all, but she's seems OK with them now. 

Father' She's older now. I think she realises that it doesn't matter how much she'll moan and kick or whatever, she has to have them, and then now she just takes... I think she's realised the quicker she has it the quicker it's done and gets over it.  

Mother' We've had a couple of traumas haven't we, which we will be honest about. Some of her medications were in very, very similar bottles, and you know we, her medicines got administered the same, she had the same one instead of different ones.  It was like such a trauma, what [are] we going to do. We phoned the hospital, and they said, don't panic, bring her up we'll keep an eye on her and things like that. It's like well, life's difficult as it is, you know, but it doesn't matter how much you try, these things happen and they tell us that this is normal, don't stress yourself out don't feel so guilty about doing it, it's just one of those things. She's on that much medicine, but it happens, and I'm sure it'll happen again. But you know, she's not on so much now is she. It's nice.

Father'  I think it's all about organising yourself. When you first sort of get home and there's all these medicines it's quite daunting. 

Mother' It is.

Father'  And you're sort of right, this is what we'll do. And you sort of eventually, it's just like, it's second nature to pick up syringes, fill them up and give them your daughter. Although I mean like I suppose with most children when they come out of hospital we had quite a bit of medicine. But as they go back into outpatients and they slowly reduce and it gets easier.

Parents of a child with multiple cardiac problems describe how they felt before their daughter's second operation and how they coped.

Mother' Well I suppose they was the other side of surgery which we wanted her to go in and have it done, but we didn't, if that makes sense, we knew that obviously she was at risk again and it's such a big operation, but now sort of looking back, it's a shame she couldn't have had it sooner. Because she seemed to be so much better -I mean, not sort of development wise or anything, but, you could see her colour, she was getting greyer and bluer, her fingers, her nose, her lips and her feet, 

Father' I think you just sort of you just sit down and you chat and you sort of talk it through with each other and I think the fact that she'd been through surgery once and come through it and this time she's slightly older, and a little bit bigger, slightly stronger, I think you feel as though the chances are a lot better, and they did tell us the first one, the first surgery was sort of probably more difficult because of her being 22 hours old and the heart being so small. I think you find, you sort of look, you'll look for anything to sort of help you through it, but I think the fact that she'd been there done it come through the other end sort of helps you yourself, and actually seeing your child well, well as can be and doing things that children do, sort of you say well you know she's looking strong, she can do this. I think it's just about having a bit of faith in the people who are doing it. You know just, and in your own daughter pulling through. You'll grasp anything to be honest.
 

They started to explain that his baby sister had a problem when they found out during pregnancy. In spite of appearing indifferent to the information he seemed to gradually take in on board and accept it.

Father' We sat him down and sort of I mean, obviously he knew that his mum was having a baby, and you know, he was sort of looking forward to it, in a way although he'd been on his own for a while, that was a worry for us, but we just sat him down basically and told him his sister or whatever it may be at the time, because we wasn't sure, would have a, would, when she was born would have to spend a bit of time in hospital because she had a problem, she had a poorly heart, basically that's what we told him. And although we sort of sat him down and told him, because we were dreading telling him, to be perfectly honest, and when we sat down and spoke to him he sort of went alright, OK and off he went and played on, 'cause that's what kids do. And we looked at each other and said that weren't as hard as we thought, but we wasn't sure he took it on board. So we left it a couple of weeks and my wife asked him again, do you know what will happen when the baby's born, and he said, yes, you know, she's got a poorly heart, she'll have to spend time in hospital. So he did take it on. And he, and he, and he's been informed ever since. I mean, we took him in, took him on to intensive care, after the operation and he'd seen her before and then after and he just sort of looked, had a look and then he said can I go out now and go and do something else?

And, and you know every time we come up we popped in, sort of stood on the chair and had a look round, made sure she was OK and walked back out. And it was so funny to see wasn't it. He just sort of, it didn't, it didn't knock him out of his stride, and which well we didn't think it did. He's never sort of shown that, has he?

Mother' But we would never have taken him in but, our cardiac sister advised us to do that and we thought she's got the experience, she knows what she's talking about, so we tried it and she was right wasn't she?

Father' Yeah, absolutely.
 

Their 15 month year old daughter sees a physiotherapist and a play therapist and is monitored by a paediatrician to help her development following her stroke.

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.
 

Taking part in a charity run helped him to feel he was doing something beneficial when he felt he couldn't contribute to his daughter's care.

And, it's difficult to explain but I've felt as though I've needed to put something back and that's probably why we decided I'd do a charity run and try and raise as much money as possible for, for heart research. I mean, just so, well basically it benefited my daughter but other children who are gonna be coming along it may be a year, 10 years, whatever. And hopefully give them a, a better life and hopefully, just, just to feel I've achieved something by putting something back and I think, I'll be ongoing in doing that, I will.  I won't stop. I will try and, and do a lot more and that, you know, put a lot of money in that way. Because I know it, it may or may not benefit my daughter but I know it will benefit people who come after and that helps me. Because it feels as though I am now doing something. All, all them months that I never, I couldn't do nothing when I couldn't help my daughter when she was lying there with tubes and, and, yeah, I mean, I don't know how it feels for sort of the, the mums but a dad, the way, I mean, I could, I can't sort of pick her up and tell her everything's going to be OK. And, I did find it difficult and by doing this, I feel as though I'm putting something back and I think, I think that's helped me get, grasp a lot of things.
 

He kept his feelings to himself and didn't talk to anybody at first.

I kept it close to myself and I didn't involve anybody else. I mean I didn't involve my wife. I just took it and it's wrong. And now looking back it was wrong because there was times when I felt that I could just sort of sit in a corner and cry my eyes out but I knew I couldn't. But I probably needed to which I did do eventually. And fortunately my wife was there to help me through it. And I think that's the big thing in all of this sort of thing, your relationship with your family. If you can find help within your family then you're half way there. 

There was times when I did get a bit emotional, didn't I? And, to be perfectly honest the two times that I did my brother was there and snapped me straight out of it. You said, 'Yeah, do what you've got to do, get it out of the way. But don't do it in front of my wife because she needs you'. 'She'll need you'. And when I look back on that it was sound advice.