Interview CH11

Brief Outline: Jack was diagnosed with Supraventricular Tachycardia (SVT), which was later diagnosed as Wolff-Parkinson-White Syndrome. Treatment: none given yet. A radio-frequency catheter ablation is planned at age 5-7 years. Current medication: none, amiodarone until age 1yr.

Background: Age at Interview: 16 months. Diagnosed during pregnancy (27 weeks). Parents' marital status: cohabiting. Occupation: Mother-Nursery Manager, Father-Contracts Director. Other children: no other children. The family live close by to a specialist hospital.

Comments that Wolff-Parkinson-White syndrome, a heart defect had not been identified in her family until her son was diagnosed with it.

Yeah, I do, I do blame myself. I don't know why.  Because we, we, me and my partner both had ECGs to test that we weren't Wolff-Parkinson-White, and it just hadn't been picked up*. Because then I started saying 'Well I get palpitations'. But I think it; I think everyone gets palpitations at some point. Yeah, I, you know, I don't know why I think, just sort of seeing him so ill.  Yeah, I do blame myself and I know that I shouldn't because, you know, even if it is, was in my family that's not my fault. So it's totally irrational. I sort of thought, 'Oh, I fell down the stairs. Did I start something off but you know there's no way, you know the doctors have told me there is absolutely no way that anything I, you know, it's a, a hereditary, it's, it runs in families.  It doesn't have to be direct, a direct line but, you know, it's very common in families. It's just weird that it is not anywhere else in my family.  

*Wolff-Parkinson-White syndrome is not a genetic condition but occasionally more than one person in a family may have it.

Comments that it was frustrating in the beginning not getting clear cut answers to her questions.

I don't think they can I think sometimes they sort of say to, you know, you want to know what's going to happen in 5 years; you want to know what's going to happen next week; you want to know if he's going to have an attack; you want to know what the, you know, you want to know things that they can't tell you at the time. Especially when they're newborn. I think newborn babies, you know, it's an unknown quantity so they can tell, you know, this happens, that happens, but I think the hospital that I was at had only had one other child there with Wolff-Parkinson-White that had been three years before, so nobody, like none of the midwives that were, were with me had actually been there, been there and only in hindsight do I, do I realise that they can't answer everything. You know, at the time it was frustrating that and, the little questions that I had you know, they were like 'Well it could be this, it could be that'. You know, 'You can do this, you can do that. It's up to you'.

And I felt that that was very pass the buck, wishy-washy but now realise that, you know, there wasn't the answers then. You know, they can't, they, they haven't got a crystal ball, they cannot tell you. They can tell you facts and figures and you don't always want to hear them facts and figures at the time. You just want to be told it's all right. And they can't say that. So you know, at the time it was, it was frustrating although looking back now I can see that they did their best, you know.

She found that life is better than she thought it would be and that she could cope.

When he was first born, those first few weeks, I should imagine you never thought at that point that you would be able to say now ....

Never.

That life is.....

Pretty normal. Never.  Never, never.

I did, I thought he was going to die, you know. At one point, I actually thought he was dead when I got to the hospital. Just because of the colour of him and the way he was, he was sedated but he looked, you know, he looked awful. And you don't think, not that you think of the future then but, you know, to what he is now, we're no different from any other mum with a sixteen month old baby. You know we still have the sleepless nights  through teething. We still have all them things. Which is good, you know. I actually enjoy that because I think 'Cor, you know, I could so easily not have him'. Had they left me for another couple of days and not given me a caesarean, you know, things could be different. You just don't know. I mean luckily when you get to that stage of your pregnancy they're checking you every week or every two weeks so you don't go any length of time anyway. And they have got knowledge about it even though Wolff Parkinson White doesn't come up that frequently, it's not unknown to them so it is diagnosable.

Yeah, life now I'd say is, you know, the same as what it would be had this not had happened to me. You can't, I couldn't see it then at all. I couldn't. If I'd have thought I'd be talking to you then, I wouldn't have been able to. I would have sort of said 'No, it's too bad It's, you know, and it isn't, it isn't.

Had problems with repeat prescriptions.

Because the amiodarone, I don't know if it's not commonly used with children but it isn't available. It's available in tablet form or injection form but not in a liquid. So it had to be specially made. So the hospital done that and then the chemist next to my GP sent off, he used to get it made.

But it only has a shelf life of 28 days so it's a daily medicine. You can't miss one and every 28 days you have to get a new one. It has to be kept in the fridge.  I mean, I think the medicine has probably been the most stressful thing over the last year than anything else. Just because there's always a problem in, because it only has a shelf life of 28 days I used to put in the repeat prescription and they needed 4 days to get the medicine and there was always a problem.

I think last Christmas, the day before Christmas Eve the chemist had rung us to say the medicine's in. We'd gone to pick the medicine up, the medicine wasn't in. Then they were saying 'We can't get it, we're closing for Christmas'. And I was like, 'Well I need it'. You know, I can't just not give it to him for a couple of days because everywhere's shut, I need to give it to him. But then the hospital were brilliant because I rung the hospital and my doctor, Jack's under two doctors, a cardiology doctor and a paediatrician and, one of the doctors just said, 'well that's stupid, come here' and he sorted it out at the hospital for me. Very, yeah, very stressful but at least it was made into medicine.

Explains that her baby who had SVT never had any problems feeding.

He was a brilliant feeder. To be honest they say that children that have been, well I say they say, this was what the hospital told me that children that are in SVT which is, I don't know what actually is classed, at what rate the heart goes up to, but all I know is it's very fast at that, at that point, but that children in SVT are brilliant feeders. So he used to take down about 4 ounces of milk in about 3, 4 minutes. So you'd be like this and the bottled be gone which was amazing. 

I did try and breast feed him but he had such a strong suck that it just, I had to put him on the bottle. And I mean he was fed with the tube for the first week they'd put a tube, a tube up his nose and just fed the milk into his stomach through that. But they'd given him a dummy to try and make sure he, he developed his sucking reflex. Which was fine, you know, against all advice they give this little new born a dummy. So I mean he never had a problem feeding. He used to, sometimes he used to get a bit sweaty he'd be quite clammy to the touch but, I mean to be honest, you know, he used to fly through the milk. It was never a problem.

And, they said it is really common that they just, it's almost like they're guzzling their milk but I think they're burning it off so quickly that, I mean I can't talk for other babies but that's what I've been told.

 

They coped by not talking to each other about their son's illness for the first six months after he was diagnosed.

I know it affected him, he talks to other people about it. We couldn't actually discuss it at all for the first 6 months, at all.  We couldn't talk to each other about it. We'd come out of the hospital and he'd say 'Do you want to go get something to eat?' and that. You know, and we'd sit there and talk about the weather and, you know, we found it very, very difficult. But then....

Why do you think that was?

I don't know.  I think because it went sort of, admitting that it was happening and I think we both coped in our own ways.  I coped and he coped and, you know, we couldn't be there for each other. You know, I couldn't support him, he couldn't support me. We were just about coping ourselves. So to talk about it meant it made it just that little bit more real and we might cry and I think we were almost scared to do that with each other in case we didn't stop. You know, whereas, you know, as a woman you know I've got some very good friends, really close family and I'd go 'Wahhh'. Get it off my chest and go 'Right, you know I feel better now'. Which he probably did I'd say with his sisters more than anything. I don't think he'd sort of confided in a lot of people. But yeah, to each other we couldn't even get the first sentence out without breaking down. Which maybe we should have done a lot earlier but we were too busy trying to stay strong at the time I think. 

 

Explains the stress they experienced when their son was in hospital and that they argued more than normal.

It did put quite a bit of pressure on me and my partner. We sort of rowed heaps. Loads actually. In fact one night at the hospital he walked out of hospital. And I sort of said 'Come back' and he just went and I didn't see him till the next day. And then on the next day he was like 'I am so sorry'. And I was like, you know, we was under so much pressure at the time it was unbelievable but we just I think it's a natural thing you sort of take it out. I mean when we was at, when Jack was in intensive care we were downstairs having a row and sort of sorted it out and said, 'Come on, let's just go back upstairs' you know, 'We come down here for a breather and not to have a row' and as we walked through the lobby the parents of the little boy that was opposite him in intensive care were having a huge row and we just really laughed and sort of said, you know, 'God,' you know, it, it, it's just the circumstances I think. You know, I think you have to keep sight of that as well.

Explains that her mother had found it useful to contact the national heart support organisations directly to find out information and to ask questions she felt her daughter wasn't yet ready to discuss.

And I think that the questions that she wanted to ask us she couldn't because, you know, she wanted to know, you know, would he die? And she can't say that to us, you know. To somebody else then she could say, and they can say 'No. This, you know, this is this' or you know, I think when you hear condition, you know, because you know the heart is something that, you know keeps your body going and so, I think, you can presume the worst. And I think that's what she did really. She got in touch with the Children's Heart Federation and the British Heart Foundation and, and they told her lots. My mum started making it her mission to come to the hospital with us which in, again in hindsight was brilliant because what I didn't hear she heard and when I'd say things afterwards she could say 'Yes, the doctor said that' or 'No he didn't' because I'd focus on one thing or I'd have a question so that'd be the main thing for me. And she would listen to all the rest for me.

But I think that she found that, you know, by talking well getting in touch, there's area contacts there, people that you can ring and I think she found by talking to other people she could sort of scale how serious this was and what the long term affects were as well. And she could ask the questions without upsetting me because I, you know, she was more concerned with not upsetting me so she was in like a no win situation. No one to ask and you know she didn't want to make things worse for me. And also sometimes when you're very close to people it's really hard to talk because you get emotional and you, you get you're almost too involved to be objective. So to have someone else say, you know, 'Well that is normal isn't it?' you can sort of go 'Oh yeah, it is'. You know, whereas you might sort of, talking, you know, me and my mum talking together, wind each other up. Sort of go, 'Is it serious, I don't know'. You know, you almost need someone to sort of stand back and say, you know, 'Yes that is bad but this is what you can do'. And just keep their level head, you know, for you. So, yeah, I think my mum found, you know, that that was brilliant for her.  

They sent her a video of the operation so she looked at that before me. And sort of said 'I don't know whether you should watch that yet. We'll give it another time when it's closer to when Jack's got to have his operation' and, you know, 'We'll look at it then'. Which it, it helps me because she helps me make decisions like that because she's found out separate information. 
 

Checking her baby's pulse rate and looking after her baby became all consuming when she first brought him home from hospital.

I was absolutely focused every day on what his heart rate was. I'd wake up and the first thing I'd have to do was, you know, it wouldn't be going to the toilet, it'd be check what, what his heart rate is. And I, you know, they said 6 hours and I ended up doing it more than every 6 hours. It was, he'd be asleep and I'd think 'Oh do you look a bit blue' and I'd get the stethoscope out and I'd be listening to him. People would be talking to me and mid-conversation I'd sort of go off and, you know, be thinking of Jack' heart again. Which, you know, it's not in my nature to be like that so it was a bit whoah, you know. 'Why am I feeling like this?' But obviously it's your baby and, you know, it's, it's all strange and it's scary. It's so very scary because you sort of think, you know, 'What happens if?' You don't, you know nobody wants to go over and see your baby very seriously ill or worse so, you know, it was almost like I couldn't sleep I had to have him with me all the time. I couldn't let him out of my sight. No one else could feed him a bottle. You know, no one else could do anything. So, which, which was really intense actually. I know a lot of new mums are probably like that but it was all about his heart. Everything was heart, heart, heart. 

My Health Visitor come every day for weeks which, that was a, that was a bit of a strain. My mum took lots of time off work and didn't leave my side. It sort of stopped me sort of living a normal life I think for them first couple of weeks. I'd sort of had all of these plans that I was going to, you know, visit my old work and I was going to see this person and that person and, and every day if we wasn't at the hospital somebody was coming here to see us. Or I had to go to the doctor's or had to go to the other hospital or someone wanted to have a look at him. So that was quite hard.

Apart from the actual shock of having a baby I seemed to have appointments coming out, I had Post-It notes everywhere. I've got to see this person, I've got to do this, I've got to do this. They wanted to check his blood so he had to go for blood tests. Yeah, them first couple of weeks were, I seemed to have lots of people, I'd, I'd met lots of new doctors and nurses. I never knew, because I was, he was under two hospitals I'd turn up at one hospital and think 'I don't know if I'm meant to be here or the other place'.  

I wasn't getting much sleep because even when he was sleeping I was then watching him sleep in case something happened to him while he slept.
 

Describes how she has learnt to cope when her son has an SVT episode.

So, since he's been off the medicine anyone that's needed to know has known and everyone knows what to do in an emergency. And, luckily, since he's been off the medicine, which was his birthday, we stopped it on his birthday. In fact I stopped it the day after his birthday because I didn't want him to be ill on his birthday. So I waited. But he was fine.

He's had one short attack of SVT which lasted 15 minutes. So in, in the grand scale of things that's really good because although he went blue, I mean literally like that, he, and he started crying and his colour just changed. I'd been really worried about how, how I would know when it happens, which I'm not now because after seeing him and seeing him just change colour like that there's no way that I could have mistaken it. And luckily it did only last for about 15 minutes. Which, it could have lasted longer. He could have had to go into hospital. So...

What did you do then?

Well, he was in, I was with my cousin and her children at my mum's and we was all in the garden and he was actually in my cousin's little girl's buggy. Which is blue. And at first, he was there and he was going asleep and he was having a bottle and I thought  it was just the reflection from the buggy. And I was like 'he looks a bit blue' and her daughter, she's six, and is absolutely obsessed with doctors and nurses so was very ok I'm taking control of this which was good because she was making you laugh because I thought I was just over-reacting. And she was like 'Oh, he don't look well'. And I was 'No he doesn't, does he darling'. And I just sort of got him out and we, by the time we'd debated on was he blue, was he grey, is it the buggy, is it me, are we over-reacting? He had just got into such a state, obviously, they, what they say is that as they get older they can come and tell you. It's like having palpitations and they can go dizzy, they can faint, they might collapse.

But he did none of that. He just really, really cried and a cry that I'd never ever heard before. So I just thought, you know, it is. And I rung the hospital, said, you know, 'He's, he's fine now', this was after the event 'He's fine now but this is what happened'. And they said, you know, 'It sounds like he's, he's had one'. He has to go on like a 24 hour heart monitor every, well they doing it every 6 months now and just to see what his heart's doing and they said that if I wanted to take him up for monitoring. But he was fine after that so I decided not to which, you know, shocked myself because normally I, I'd normally be at the hospital saying 'Keep him in'. Because, I, you know, wasn't very confident. But I actually feel very confident with it now and, and, I thought no, he's fine. I checked his heart, his heart was fine and they said that if, if, you know, if he's likely to knock himself out of it. It's if he can't knock himself out of it that he needs to go to hospital or something.

So yeah, yeah, we, we just, I just took him home. We just went home and I just had him here quietly and didn't sleep that night. But he was fine. You know, he was fine. And it's only, he's only had one since when he, that was four months ago so, well he come off the medicine four months ago and the attack was about two months ago so, and he hasn't had one since, so. And they can't tell me if he's likely to, if he's not you know, they can't give me the answer to that. Which I accept now but, you know, they can't tell me. So, yeah, I live with it now. It's not, it's not all encompassing anymore.