Interview CH31

Brief Outline: Vikram was diagnosed with a large ventricular septal defect (VSD) at 3 months old. He had corrective open heart surgery to close the VSD at four and a half months old. He is recovering well and no further treatment is expected. Current medication: none.

Background: Baby's age at Interview: 9 months. Diagnosed at 3 months old. Parents' marital status: married. Occupation: Mother-Full time mum, Father-Information Technology. Other children: one older child. The family do not live close by to a specialist hospital.

Describes their baby's symptoms and the missed diagnosis by several health professionals.

Vikram was born in June, June of 2002. Normal delivery, normal, no problems. That was in June, the last week of June. And around the mid-July, it was when we for the first time we felt that he wasn't feeding very well. Now, when we say he wasn't feeding very well, he used to take an awful long time to drink maybe 30 or 50ml of normal milk, of SMA milk. He was on his mother's milk as well but he wasn't doing very well on his mother's milk either. He was taking a really long while to drink. We mentioned this to the health visitor and she said 'that's okay, that's something, some babies do take long'. We also didn't give it too much attention because [son's name], that's his older brother, he was a fussy eater, he was a fussy drinker and he still is. So we thought, possibly Vikram is also like that. 

But eventually it did become a problem in that he didn't get enough milk with that, in that he wasn't taking enough. We went to the GP a few times but nothing really happened. And then we also realised that he was coughing more than normal. And it wasn't a normal cough. So we mentioned this again, again they said it was something common, go away. And one other thing that we noticed at that time was that the back of his head when he was sleeping was getting all wet. Wet with sweat and his pillow was getting all wet, soggy. So we again mentioned this to the GP when we went and he said that was something that would go away. But nothing really happened.  

Then on the 23 September, that was the day he was actually diagnosed, and on that day, that morning really we noticed he was coughing very bad. And this cough was much different than the cough that he'd had all along. And it was quite bad and it was not a normal cough, really bad. So we took him to the GP and we said 'please listen to what is, see what his problem is' and then the GP said 'I hear a murmur in his heart, can you go to the hospital?' And they wanted us to go to the hospital. We went there and we were there all day and towards the end of the day they said that they suspected a hole in the heart which is the VSD. 

Describes feelings of fear, disbelief and anger when his 3 month old son was diagnosed with a...

We went there and we were there all day and towards the end of the day they said that they suspected a hole in the heart which is the VSD. 

Well that was quite frightening that evening, and then they said they would have to do an echo of the heart, they would have to listen to the heart. They would have to do an ECG and some other tests now which they did the following day. And they confirmed a large VSD is his heart. And they said he would have to stay in hospital for a bit so they could see what medicines he needs to take and stuff like that.  

That was quite frightening, at that time.  Well it still is now. We are from India, we come from India. We don't have any relatives or any family here. All our family is in India so there's just myself and my wife and our 2 children and it wasn't very easy to take something, we'd never heard of such a thing before. We had heard but we always thought this is something that happens to somebody else, it's not something that happens to us. A hole in the heart.

Can you describe to me some of the feelings you had?

Well the first emotion was that of, that of disbelief and actually it was just myself in the hospital with Vikram when he was diagnosed. She was home with [our other son]. It was just plain disbelief. I thought he was, I thought it was serious enough that I thought he'd go. [Pause] And then anger, then anger. Frustration in that we were going to the GPs so many times, we were telling them to look at him, we were telling him that he was sweating and we were telling him that he was not feeding. But they just couldn't do anything, I won't say they couldn't do anything. They just couldn't diagnose anything.

Explains why he decided not to seek a second opinion.

On the one side, our doctor was telling us that although he was specialist he was, he was a child heart specialist, he was telling us that the operation had to happen. But we also read and see on television so many doctors making the wrong diagnosis or something like that. While we didn't in the least suspect or rather doubt the capability of this doctor, he is very well qualified, but again a second opinion we thought would be useful. But we didn't quite know how to go about this. So we thought our first point of contact would be our GP and we asked and he said 'yes that can be arranged'.  

And we also read about second opinions and he said 'yes that can be arranged' but even before we went in for a second opinion what I thought was the specialist, this cardiac specialist, he was not the only person that was doing this. There was another person always present. There was one person always present when he was doing it. The same diagnosis was made by the two doctors here when we first met them. They were also saying very much the same thing and it's not that these people's report will be taken to this other hospital and somebody would just look at it and start operating. They would investigate again.  

So there is in effect 6 people looking at this. So what is a second opinion now? I didn't see the benefit of going for a second opinion. I thought there were 6 opinions for me. 6 different people looking at him. And each time there would be somebody doing an echo of the heart. Each time he went somebody would do an echo of the heart and they would confirm exactly. And these reports that various doctors make out, they are made independently of each other. And they verify the two reports actually, it's not that this report is. So I thought pretty much, yes this is good as any second opinion I could get. And I didn't go for the second opinion. But that is an option that people might want to consider but I felt it was possibly not, not called for.

Felt communication between nurses on the cardiac ward could have been better.

Cannula, right cannula. So they put this cannula in for Vikram in case of emergency they won't have to start looking for veins at that point. So they put that in and they bandaged it all up.

Now that's the first time we've been in hospital. We've never been in hospital before. We won't know what a cannula really is but they told us what the cannula and why it is bandaged up and all this. We didn't know that, for example, that had to be redone every day, re-bandaged. But it never was bandaged, or it never was re-bandaged, it wasn't done up again. For 3 days it didn't happen. Now each time, he would lie like this and when he vomited his milk out the milk would go on that bandage, some of it would soak through, seep through more and more and get soggy and a bit, after 3 days the thing starts stinking. So we go to the nurse and say, 'See that's thing is stinking, can you do something about it?', 'It's not my shift'. 'Ok. Fine can somebody do it?', 'Yes'. One day goes like that then somebody comes and says 'oh has nobody been doing anything about this?'. We've been crying our hearts out for somebody to do something about it. 'Okay, then somebody does. And you see this guy's hand all shrivelled up and it's bad. And it's so bad, the way it's all become soggy and wet and obviously you'll see that if your hand is. I say 'oh that's pathetic' That's not pathetic, the service is. That's what I mean when I say, the nurse's job is not just a job. I mean they are doing their job, they are coming, they are bandaging, it's not that they're not doing it but it's more than that. It requires some patience and it requires some dedication and some responsibility. Not everyone can become a nurse. They should be, anyway.  

And when you go, when one person finishes a shift, he has to ensure that the next person who is taking over knows, or rather the actual take-over, the actual transition is very smooth. They have to ensure. Half the time we have to go to this person and say, 'This is what happened in the previous shift, can you do something about it now?'  

You would think that was the basic, that was what you would expect and if you have to fight for that. Again, they have done a great deal for us. I mean they have, obviously they have helped our son.

His attitude to life has become more philosophical and they now feel confident that they could...

Well I suppose I've certainly become stronger now. One thing this has taught us, one thing it has definitely taught us, one thing this has definitely shown us, I don't know whether it has taught us but we can do it. The two of us together, with [our older son] we can do it.  If there really is a problem tomorrow of some kind, whatever, whatever it is, I think we can do it.  I would not have been so sure of myself before this. But today I can say, with [my wife], and with [my older boy] I think we can do it. I think we can face up to quite a big challenge. It has also given me a very, a rather philosophical view to life really.  Somehow, I was in the delivery rooms when [our older son] was born and when Vikram was born. What I saw there, the birth that itself, the whole process, the birth, a person being born, in a very real sense has made me feel very insignificant. I am not saying anything demeaning to myself, it's not like that, on the grander scale of things somehow I have become more philosophical in that all this is, I have a lot of words, but the splendour of it all, how small I am in all that. 

And then this, we planned for so many things, we want so many things to happen to us, we try to do so many things. And one little hole in one little heart could really upset all of that. How insignificant am I in all this? I don't mean to put myself down when I say that but I am just looking, I am now beginning to see things in a much larger frame. I am now beginning to see a lot of things in a much larger frame now than I used to be able to do before. Earlier I was just looking at my house, my mortgage, my computer, my somehow today I am not attaching that importance to that mortgage any more as an example. Somehow I am thinking that there is something much bigger in all of this. That is how it has affected me. I think that is how it has affected her as well. She also repeats to me so many times now, she thinks that together we can do it.

Explain how they learnt to adjust to the idea that their son would need to have surgery.

Actually, before this, what, the strategy that they adopted, that the doctors adopted with Vikram was, they didn't want to operate on him just yet at that point. When he was diagnosed, he was 3 months old so his heart was not strong enough for an operation like that. On the other hand, the hole was large enough to demand an operation. So they were trying to balance these two; as to the need for an operation and the ability of the heart to cope. So what they said was that each month we will review Vikram to see if we can postpone this operation one more month. At any point if we felt that he needed to be operated on immediately, we would do it then. We liked the idea, we said 'yes, that's good enough'. That made sense really, because on the one side the logic of it all suggested that if yes his heart is not strong enough to withstand an operation like that and more than that we were afraid. We didn't want the operation, we didn't want the operation, we wanted the operation so he would well, better but we didn't want the operation because we were afraid. We were afraid that, we were just afraid, we didn't want it. 

What was an issue also was that Vikram was generally well, in fact he was called 'the smiley baby' because he was always smiling. In himself he was fine, except that he had this problem which had to be corrected. And were, were also, these two months from the time he was diagnosed to the point when he was actually operated, that gave us the quiet strength really to accept the fact that yes, he has to be operated and it is for his good.  Nothing was going to happen to him, he'll be fine. Although we had some fear but logically looking at it, it was for his good, he needs it. We would only be doing him wrong by not getting him operated or by delaying it when we didn't need to. I mean, if we didn't need to. 

Advises parents to be well informed and to take an active part in their child's care.

It is a very frightening thing, this, on the outside. It is definitely very frightening. I don't suppose there would be a parent who would not be overwhelmed by the magnitude of all this. It is very frightening. But technology is advanced, technology is quite far advanced. Just go with the doctors, the doctors know best. There is nobody else who can know better than the doctor. Be very well informed, be very well informed. Read, read, get information there is Internet which has got loads of information. If you don't have access to that information there is so much information available in the libraries. But get information, read, ask questions. And just go for it, just do it. If you are faced with the operation itself, don't unnecessarily postpone it. Do it, get it done. And technology is so far advanced today that they are able to make corrective, or rather they are able to take corrective steps even if they don't actually operate they will insert tubes, they are able to do all these things. They are able to actually replace valves or maybe even correct valves, I don't know what they are able to do but without actually operating on the heart. So trust the doctors, go. But be informed, I mean, you have to play a very active part in all these things. It is not that you can just say 'okay doctor I have a sick child, can you correct it?' No, play a very active part and just go for it. Everything will be fine.