Interview CH22

Brief Outline: Millie was diagnosed with Coarctation of the Aorta and a VSD at 3 weeks old. Treatment: she had closed heart surgery to repair the coarctation and a band was put around the pulmonary artery at 3 weeks old. At 7 months old she had open heart surgery to repair her VSD. Current medication: captopril.

Background: Age at interview: 16 months. Diagnosed at 3 weeks old. Parents' marital status: married. Other children: one older child. The family live close by to a specialist hospital.

She was glad she didn't find out in pregnancy that her daughter had co-arctation of the aorta and...

Mother' Because that's the thing we found was. We. I thought, oh I think we both thought that if you had a sick a baby than you always knew about it. But we didn't realise was I'd say 80-90% of the parents we met in that had no idea there was anything wrong with your children 'til they collapsed, or until they became ill. It wasn't found when they were pregnant. It was and I personally am pleased that what with what happened, I wouldn't have wanted to know when I pregnant, there was something wrong 'cos to me, I gave birth to a healthy baby who got ill and then she got better. Not I gave birth to a poorly, sickly baby then I didn't know when she gonna get better. I just, although it was dangerous, and frightening at the time then I'm glad it happened the way it did. [Father' Yeah]

Explain that when their daughter was taken in for emergency surgery, they let others know by...

Mother' We were very lucky that we, well we didn't organise it but it just happened that way that this network of people was building up and we would phone [my husband's] friend, his best friend [name], [Father' Hmm] and he would phone out specific people and they would then phone on other people [Father' Hmm]. Otherwise the phones would, just didn't stop ringing and when you come home you don't want to be going through what's happening at hospital and it was good that they'd sort of arranged this so that as soon as a bit of news came out of hospital it all got out to everybody [Father' Yeah] without us having to do it.  We knew if we phoned, made one phone call then everyone would be told. [Father' Hmm] And that was a relief to not have to do that as well. [Father' Hmm] That was a relief.

And how did friends react? You told me a little bit about coming home from hospital but in general how did they react?

Father'  I don't' think they knew how to react.

Mother' No. I think the first time when it all happened and it was a shock. We were so long in hospital that we didn't see the impact of what happened to our friends. But I know the messages that we got back were in flowers and everything. They were shocked and didn't know what to do. But then also I can remember them coming round and saying 'Oh, is that her? You know, we expected like tubes and stuff' [Father' Hmm] and there she is sat on the sofa and they [Father' Hmm] they said 'Oh, she's like, she's normal then?' And we said 'Yeah you've just got to be gentle with her scar and apart from that, that's it'. [Father' Yeah].

Mother' They were like us, they didn't know ...

Father'  We were na've...

Mother' What she was going to look...

Father' You're na've about it until it happens to you, aren't you?

They started searching for a reason for their daughter's heart defect but were reassured when...

Mother' And that night when we went in, I remember one of the doctors saying to me, before I even had the chance to think it, and I was starting to think it, he said, once we got her settled into the ward, he said, I want you to know, it not anything that you've done and it's not anything you've eaten or haven't eaten or anything you've done in your pregnancy that's caused this, this is what's called a congenital heart condition and it's just happened. That's all that's happened.

Father' The luck of the draw. 

Mother' And I felt quite relieved then 'cos that was starting in the panic, that was starting to you know, what's happened, how's this happened, what could we have done and I thought that was very reassuring. 

Father' You, you for a short period of time you were searching for you know, something, not something or somebody to blame but you were searching for solution. [Mother' A reason, yeah]  yeah a reason behind it and what could we have done differently. Then time and time again you know, you have it given back to you that's there's nothing that you can do. It's you know, done now anyway. But it's certainly nothing that you could have actually changed to make it any different.  

Describes the different sources of information they used and their usefulness.

Father' The Wessex Heartbeat web site, that I looked at. The British Heart Foundation web site, gave me a lot of layman's terms because I had no, no understanding of what a coarctation was, or VSD or..

Mother' Well you did 'cos they were explained to you.

Father' Well I had it explained to me but I still didn't understand, you know, truly what it was. 

Mother' I remember that you came back into hospital though and you said, I think he'd come home one night after the first op [Father' Hmm] and he's obviously been on the web sites, which was on the back of a pamphlet we were given, [Father' Hmm] and I think that you'd got into bit of a panic about it.

Father' I'd, I'd scared myself because it gave me worse case scenario of everything and we were lucky that Millie wasn't worst case scenario of it. 

Mother' But you don't know that when you're looking on a web site, do you?  

Father' No, and you know, before this had happened to us, I never even thought about looking into anything like this. But I will say British Heart Foundation web site gave me, I think they've got a list of all the terminology that's used on there. And I did find that very, very useful because I printed it off thinking, right, well now when I hear about it, when someone says it, I can actually have a quick look and... 

Mother' But you see, I was in hospital, so I didn't look at any of that. I looked at what they'd given us and what they had given us was, you know very.

Father' It was very informative.

Mother' Very informative and complete and anything that wasn't in there they were happy to explain but it all was in there and they'd done our own diagrams, hadn't they? We had sheets about the medicines and what they did and we had their little diagrams that they drew, [Father' Hmm] during that, drawn that night and..

Father' And more even to the point where I, I'd asked a couple of questions and didn't understand the, you know, a couple of the answers to the point, where the cardiac surgeon went off and actually got a...

Mother' Oh yeah.

Father' A heart.

Mother' A heart, a plastic heart

Father' A heart diagram, a plastic heart. And sat me down and said, look this is this bit, this is this bit, you know, [Mother' Yeah] and he said to me, I can leave this with you for a bit if you want and have a look at it. But I found that really useful because you know, I couldn't even before hand had even pictured what a heart looked like. 

Mother' I think one of the talents of a paediatric doctor, wh

They coped in different ways which surprised them.

Mother'Yeah, I think that the other, you know, we learnt that even though I thought I knew everything about [my husband] we really dealt with it so differently.

Father' Very differently.

Mother' I mean you have to let the other person deal with it. [Father' Hmm] I mean I thought, 'cos [my husband] didn't want to know all the details 'Oh maybe he's not interested'. And then I'd, you come to an understanding that he just couldn't cope with it [Father' Hmm]. He didn't want to know and he probably couldn't understand why I wanted to go over every detail and I wanted to know everything they're doing.

Father' All I wanted to know...

Mother' We're just different.

Father' I just wanted to know the basics and is everything going to be all right? On a very basic sort of understanding, where as you wanted to know absolutely every single thing [Mother' Yeah] that was going on. I mean, to me if somebody's given medication it's to make them better. I don't need to know what it's doing whereas you would of, you would want to understand why that medication, why that particular medication's going on.

Mother' But I think everyone [Father' Don't you?] is different and I, and I don't think you can ever predict how someone's going to react and, in a, and who's to say what anyone will do in a panic but [Father' Hmm] you can only just deal with it the best way that you can and get through it and then afterwards you have a chance to think about what's happened.

Describe the impact their daughter's diagnosis had on both sets of parents.

Mother' I think they were, I think, the thing is I think that where we're younger and we watch the news and everything and we know about advances in science and you can understand things I think from a grandparents era things like that didn't used to be repaired [Father' No] and things, cardiac problems in their age were a death sentence. [Father' Yeah] And I think for them it's been quite a shock and quite a learning curve because they've wanted to know all the information and all the pamphlets we've been talking about they've wanted to read and I think it's, I think it overwhelmed them. And I think, I think you know quite often they came into the hospital and they were speechless. I mean [Father' Hmm] just the machines, the equipment, a baby being there, the terminology of the operation. I think it.

Father' Yeah it took them aback a bit, didn't it?

Mother' I think it took them aback but I think they drew a lot of strength from being together and we're lucky that they're very, very close and they spent a lot of time together and when we were actually in the operations they were all together waiting for news and...

Father' Well I think that...

Mother' They helped each other.

Father' I think not just that, it is that the, them as grandparents it's, it's, it's almost more difficult for them because a) they're slightly removed from it, although they want to be completely involved and they're almost waiting for, for us to give them information or to say 'Come in'. Which must be terrible because we're still there [Mother' Yeah] knowing, you know, [Mother' Well they say] all the changes.

Mother' They say, they love the children as if they're their own but they are this step back, it must be awful.

Father' But not just that, I think that, then the thing I didn't realise until your mum said it to me is that you've got to understand that they're my grandchildren but also you're our children as well [Mother' Yeah] and, and you can only understand when you've got children how harrowing it is to see them distraught and upset and worried and you know you almost want to take it on yourself [Mother' Yeah] and...

Mother' We were only worried about Millie and they were worried about us and Millie.

Describe how their daughter was admitted to hospital for emergency surgery when she was three...

Mother' And they said that they were, well they sent you home to get some more clothes didn't they? And then they said they were going to call some cardiac people down, which was a bit bizarre 'cos that wasn't what we were expecting at all. By the time you came back...

Father' That's when they told us, wasn't it?

Mother'They, they were there doing an echo on her and they told us then that there was a problem.

Father' I think we, we had every emotion under the sun I think didn't we?  

What were those emotions?

Father' Shock, 

Mother' Horror

Father' Yeah, horror... the, the feeling of not us, you know, it would never happen to us, nothing like that would happen to us. I think we were a little bit sort of bewildered as to what to do, you know...

Mother' Plus it was the middle of the night, as well and we were just...

Father' And Christmas Day

Mother' And it was Christmas Day. [Father' Yeah, yeah] And that, that morning we all been sat together opening presents and then she, and by that point she was in a state of collapse. She wasn't functioning and he said she was in heart failure by then and that she was, you know... and he said it very nicely but he said we'll have to operate first thing in the morning and she'll need more operations, was how he worded it. 

Father' So at two o'clock in the morning, they were calling all the staff in preparing to do an operation on Boxing Day.  

Mother' They moved us to the cardiac ward, didn't they, where they had all the equipment and then they started hooking her up to all the machines, which is, when it started to get quite frightening.

Father' Yeah, I think that we were initially in such a state of shock that you, you don't know what to do, but adrenaline kicks in and you know, you get on with it. What quite we were getting on with, I don't know. But it was a heck of shock heck of a lot of, you know, a big learning process, as well because people were saying things to me that I didn't understand, that I needed explained.

Mother' But they did explain it, didn't they?

Father' In the middle, yeah, but in the middle of the night, it's very difficult to for somebody who's tired and very busy looking after your daughter to actually explain everything. I think the following morning prior to the operation we had the surgeon and the..

Mother' Anaesthetist 

Father' Anaesthetist and the cardiac consultant, all independently came to see us to explain everything and they...

Mother' And they drew diagrams, which was helpful because they're saying all these wor

Describe making sure their older child's needs were met when their baby was admitted to hospital...

Father' I think the other concerns that we had had were [son's name] our son [Mother' at home] and how we were gonna look after him and or who was gonna look after and there was big. It was great because we were very lucky to have, to have a lot of people around us. 

Mother' And it was Christmas holidays and they were all off work, which was extremely lucky.

Father' But it, it was a big concern that although all your main focus is on your child that's sick, you, you've still got a whole family and everything and life to get on with as well.

Mother' Who we'd left, who we'd left on Christmas Day, which his presents, [Father' Hmm] wondering where were we? So'

What did you tell your son? How did you tell them?

Father' We told him immediately 

Mother' But, we, you know, well we tried to phone him in the night didn't we? [Father'Hmhm] We told, they obviously knew that we'd gone to the doctor's that was it and my Dad had come here to look after [our son] who was asleep and we tried to phone them in the night and he'd unplugged the phone, It was just almost horrific scenarios and so we couldn't get through till 6 in the morning and we got through and said there's a problem with Millie, it's her heart, which obviously was a terrible shock and they came down to the hospital. [Father' Hmm] The two mums came down to the hospital and they actually arrived as Millie was being taken away for the operation. And then they started building a plan of how they were gonna look after [our son].

Father' And we were, we were very lucky.

Mother' Because we were offered, you know, [our son] could stay on the ward particularly because it was Christmas, they were quite a lot of families staying on the ward, there was room but we wanted, we decided that we wanted [our son] to be kept here or at my mum's.

Father' Yeah, just away from, away from...

Mother' Away from it 'cos we felt he was too young, he was only 2 years 4 months, [Father' hmhm] and he was just too young to understand and plus he'd only just got his baby sister and I don't think he could have coped with there actually being anything wrong with her or' [Father' No] So we just said that she was at the doctor's and mummy and daddy were with her.

Father' And it did actually work. It did actually work well.

Describe what it was like when their daughter's operation to correct her VSD was cancelled four...

Mother' It was cancelled four times actually, which was very, very distressing.

Father' Extremely traumatic but I think that when you come out and look at the situation you realise that the first operation that she had, would have cancelled somebody's else operations probably.

Mother' If it hadn't been happening Christmas day because it was an emergency 

Father' And you learned to understand that emergencies come first and although it's extremely traumatic and you build yourself up to prepare the whole family for the operation.  

Mother' You do. It's such a build up because the first one is suppose to be in the May and of course you pack the bags and you arrange where your son's going to be. You take time of work. You prepare yourself mentally. [Father' Hmmm]  I found myself, I couldn't stop myself looking at her and thinking that her chest was never going to look the same and I, I found it upsetting to give her a bath in the days beforehand because I thought she was never going to look the same as this again. I was just very nervous about it. And obviously the first operation you have a chance to think about she's going to be operated 'because one minute they told you, the next minute she in. This you got slow build up which is, which was agonising and then we took her in and she stayed overnight and of course you have to starve them so they can have the general anaesthetic and he came over and said 'she's got high white blood cell count, she's got a cold we can't do it.  

Father' Yep

Mother' And we were just, we thought we were ready for anything and we weren't ready for that. [Father' No] It was horrendous and we had to just take her home.

Father' I would say that was the cancellation of the operations was on par, as bad as emotionally for us as finding out, you know the problem that we had.

Mother' Because everyone's, you know, waved you off and then you arrive back and there and you unpack all the stuff and you know that you've still got to go through it and then it was unfortunate but there was it was cancelled and there was two weeks where he said that he was, the surgeon was filled up and then he was on holiday for two weeks. So it wasn't for another five weeks before we went in again and I think we went in on a Thursday, it was cancelled because there was emergency 'til the Friday. He said he would operate that wasn't his normal day and then that was cancelled, I think before an emergency, a baby came in and'

Father' Yeah it was a baby flown in.

Mother' Yeah a really poorly baby was flown in [Father' Hmm] and he said, 'I'm going to have to cancel again but I'll do it on Monday. Do you want to go home? And I said, 'Yeah, we'll go home.' And we went home for the weekend again with the bags, again. [Father' Yeah] And then we came back and I think it was cancelled one more time 'til the afternoon. I remember, oh, he came, the surgeon, she was last

He found taking his daughter to the anesthetists room rewarding because he was able to meet the...

Father' But you, you get to take your child down to...

Mother' Yeah you can....

Father' The, the operation and, and go in while they sedate them and I did that on the VSD and from what I thought was going to be a horrible experience of, of almost letting your child go was actually a really rewarding experience because all of a sudden there was faces to the anaesthetists, there was faces to the surgeon. You know, although we'd met them before there wasn't this big faceless sort of void that, where you give your child over and hopefully get it back.

Mother' That's what happened in the first operation [Father' Yeah] where she was so desperately ill they just wheeled her away [Father' Yeah]. We didn't get to carry her, she was too ill.

Father' And, and I would advise anybody to, to go down to, you know, and be with them while they're being sedated because it's not a, a particularly nasty thing to look at [Mother' Hmmm] or anything like that. Is it?

Felt confident and relieved to be bringing their daughter home.

Mother' It was a relief. I was relieved to be home.

Father' It was, it was one of the best things I've ever had getting my family back under one roof.

Mother' We had Christmas again, didn't we? In January we had a big Christmas because we'd left Christmas half way though and we'd had all our decorations still up.

Father' Yep and I can remember because I was staying at home in the evenings to look after [our son], every night before I go to bed I'd look in her room and the cot was empty. And it was very, very difficult and you'd each night, you think well you know, maybe soon, maybe soon. And to actually get both of you back in under the roof, was the best feeling ever, it was just fantastic. It really was. Still with the knowledge that you know that there was gonna be many operations following and a lot more heart ache but it was it was a wonderful feeling to have everybody back under one roof, even though knowing it was only going to be for short period of time.  

Mother' Yeah, but I think the other thing was is that I was very confident with her 'cos I'd stayed with her in hospital and I wasn't worried at all and they said to me, 'We won't send you home unless you're totally confident with what you're doing, with the medicine, with what you're doing with feeding but what I noticed when we came home was all of our friends and family were, oh, you know, you're not worried and oh, you're not putting her in her own bedroom are you? And we were like, well yeah. [Father' of course we are] And we were totally at ease where everyone else obviously as I probably would have been. They'd seen a, you know a baby's had a cardiac operation. 'Oh my god, you know, how are you going to cope with her at home where as to us, we'd seen her through it.

Father' We had to be very careful with her at home but it wasn't you know my understanding of it would have been you know we would have had; not to pick to her up, not to you know let her move around or anything or anything like that and it was no where near as restrictive as I thought it was [Mother' No] gonna to be after the first operation when she had the closed heart surgery, it was nasty and you had to be very careful. But even when we brought her home after the second operation on open-heart surgery, it was, you didn't need to be as delicate [Mother' No] as I'd imagined, you know it was.