Interview CH14

Age at interview: 3

Brief Outline: Sam was diagnosed with a complete Atrioventricular Septal Defect (AVSD), pulmonary atresia and right atrial isomerism. Other problems: No spleen and mal-rotation of the gut. Treatment' A BT shunt at 24 hrs old, followed by the Glenn procedure at 6 months. More surgery planned. Current medication: warfarin, penicillin.

Background: Diagnosed during pregnancy (22 weeks). Parents' marital status: single. Occupation: Mother-Full time Mum. Other children: twin brother and one older child. The family live close by to a specialist hospital.

A mother of twins describes how she decided to continue with her pregnancy when she was told one of them had a serious heart defect.

Well, I think various things. With the complete termination; a big factor for the decision was the fact that I was quite heavily pregnant by then and it was going to be quite traumatic because I would've had to actually have given birth to the babies and I think the thought of that, was just too much, I really don't think I could of gone thorough with that. The selective termination, there was such a high well, I think, statistically it was about a 15- 20% risk of a miscarriage, and I felt that that was too high risk.  

And also the fact because I was having twins and there was a baby there that was perfectly healthy was a big factor as well.  And, I thought, well, yes, they're telling me that I have a child here that has a major problem, but I also have a child here that is perfectly healthy, nothing wrong with him at all.

And when I spoke to consultants and the specialist nurses and so on, and their feeling was there was no risk to the healthy child if I continued with the pregnancy and they didn't feel also that there was any risk to me if continued with the pregnancy.  

And my thought was really was that they've come this far and I feel that I ought to give them a chance. Ad it's up to them and I am a bit of a believer that sort of mother nature will take its course and I felt that if they weren't meant to be then I would've had a miscarriage. I'm not a religious person at all but I just do believe that, if something's not meant to be, then it won't happen. And I think, the fact that I had a healthy child there. The fact that I would've had to go through a pretty dreadful birth and I just felt, I ought to give them that chance. And if once they were born, if he didn't survive, then at least he'd been a chance to fight for life. And, I think that's what gave, made me decide that really, that, he deserved the chance, and really I suppose I just said, 'well it's up to you, boy. You try, you do what you think now.  

Looking back, whether that was, I mean obviously for me it was totally the right decision because he's doing so well. 
 

Visiting the intensive care unit and cardiac ward before her twins were born had been very beneficial.

The other thing that we did was actually we went up to the hospital and went to the various wards. We had sort of a tour of the cardiac ward and went into intensive care. And that I think was the most beneficial thing that I did because it does prepare you.  It is pretty awesome, nothing can prepare you totally for what you've got to come. But to go into intensive care before hand, really was a great help, because you've never seen anything quite like it before and I think if you hadn't gone in there first, it would have been a big shock, a really big shock. So, I would certainly say that was the best thing I did really, was to go in there first. And also we went to the neonatal ward as well, and the special care and again, in normal life you'd never of seen anything quite like it and it is quite daunting. So to have been in there and just witnessed beforehand, it just prepared for a little bit for what you had to come, and where you had to go, and so definitely very beneficial.
 

Explains that it was very hard and upsetting being separated from one of her babies after birth.

So I went in there and saw Max and I think with him I was able to have a little cuddle.  

But with Sam we, I couldn't cuddle him, I could just, just about sort touch his hands and then the ambulance arrived to actually take him to intensive care and I have to say that was one of the worse moments. They came in and they had a special incubators, travelling incubator, and he had, he had to literally go sort of across the road but they have to take him in an ambulance. So it wasn't as if they had were taking him miles away, it was walking distance but they were sort of getting him all ready and then they wheeled him out and put him in the ambulance and off it drove. And I have to say I broke down then. That was probably, getting on to one of the worst moments to see him just go like that, even though he's literally only sort of going across the road, to the main hospital to the intensive care unit, but I did find that very, very hard. And I wanted to sort of get over there but you know they said well it's not a lot point straight away, because they've got to get him there.  They've got to get him into intensive care and out of this incubator and all sort of set up if you like, sounds a strange thing to say. And they'd prefer it if you're not there at that time which is quite understandable so I then spent some time with Max. But that was very, very hard.

Describes the different reactions of friends and family and that they found it difficult to understand when information about her baby's condition or treatment was uncertain.

In different ways. Very differently. Some people avoided me, didn't want to talk about it at all. Other people wanted to talk about it all the time, so very, very different. As I say, some people would sort of keep on and on, they wanted answers and I couldn't give them answers, and it was very difficult to make them understand that I can't give them answers. And some people would even sort of say, well you want to find out, you want to ask, you need to know these answers. I say well they can't give me these answers. And a lot of people can't understand that and that was quite difficult to get through to people, that you know, there aren't answers at the moment, or definite yeses and no's. But on the whole, everybody was very, very supportive. But as I say, I think, some people found it very difficult, they just want to avoid talking about it. And just almost ignored the pregnancy in some ways, like because there were problems, they didn't want to ask me how the pregnancy was going, didn't want to talk about it at all. And I suppose, just everybody sort of handles it in a different way really. But no very mixed sort of feelings but nothing awful, I can't say that anybody was awful at all. But everybody sort of deals with it in their own way. 
 

Comments that she went through a stage of blaming herself which recurs occasionally several years later.

I did go through a stage of thinking it was all my fault and I think everybody does. You know. First of all you think 'Why me?'  And then you think 'Why?' And you do start to think, you know, 'What's caused this?'  And then you start to think 'Well, it's my fault. I've done something wrong. I shouldn't have done this, I shouldn't have done that' and the hospital assure me that there's nothing that causes it. It, it just is one of those things that happens. And, I must admit after a while you do tend to get quite knowledgeable about the heart, you know, of how it works and this that and the other and when you realise all, you know, what's, what's involved with the heart you realise that it's absolutely fantastic that the number of children that have got a perfectly normal heart. 

But it still goes through my mind sometimes, why. But the hospital assure me that I didn't do anything wrong, it's just one of those things that happen. Sometimes, you know, these things do go wrong and, you know, the heart doesn't develop. I mean, as I say, Sam has no spleen either. He has a saddle liver which means the liver is larger than it should be. His appendix were in the wrong place, so, and he had the mal-rotation of the gut. So he had all these different things and you think 'Well, you know, why'd that all go so wrong?' But as far as I've been told and as far as I know in my mind it just does. It's just something that happens sometimes. You know, and so he's not perfect, you know. But there is still a niggling little thing I suppose in the back of my mind that was it something I did but I think you have to just really snub that out because it could eat you away and there is, as far as I know, no reason for it, It's just unfortunately sometimes that does happen.
 

Describes the respite support she was given for six months when her son was a baby.

Yes, the hospital I could contact at any time if I was concerned about him. They did also organise sort of a respite for me. They had an organisation that had charity workers and they would come in for two hours one day a week and they were fully aware of his condition and I felt confident leaving them with her. And that was a great help. Although it was two hours a week, it was just nice to just be able to walk out of the door on my own with no children at all and just walk down the road. You know, and just have that break of, of handing the responsibility over to somebody else. Not so much not having screaming children or anything like that, just suddenly not having that ultimate responsibility because it is quite a weight on your shoulders and, you know, you just [sigh], and it's just nice to go, just walk down the road, sit on a park bench and just relax for 1/2 an hour or whatever.  

Typically you try and cram as much as you can into that two hours. You know, 'Oh, I'm going to do this, that and the other' you know but I think the main thing was to have that responsibility taken away just for a little while and that was a great help I have to say. It didn't, it didn't go on for very long. I think sort of 6 months maybe but it was, it was a great help. Yeah, so we did have that support.

She didn't leave her son with anyone for the first two years and they went out less as a family because of her son's susceptibility to the cold and infections.

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.
 

Describes the battle she had feeding her newborn baby but said it got better when he went on to solids.

So it was this battle; do you think he'll have little bit more, let's try him again. And he might have, you know, a couple of ml and you'd write that down and you're sort of adding it up, and we're nearly there, we're nearly there, you know. Try him a little, little bit more, see if he'll have a little bit more. And you would just sort of, willing him that please just have a little bit more, a little bit more, and it was just sort of a 24 hour thing all the time on your mind. Can I get another ml of milk down, will he take an, and then off course he'd be sick. And he did tend to, to vomit quite a lot because I think, you know, again he'd had this operation for the malrotation of the gut so his tummy had been played about with so he was a bit delicate. He was also on a lot of medicine. He was on diuretics, which do tend to upset the tummy anyway. So you know it was just this constant, constant battle of always on your mind of feed, feed, feed, feed, feed, you know and I mean it's like that when you've got a baby anyway, you know, feeds every 3 hours, or whatever. But it was just so important for Sam, so important that he had this milk and just so difficult to get it, him to take it. And as I say, you just, sort of live your life, just thinking you know, that's it, this is my life; my one aim in life to get so many millilitres of milk, you know into Sam and you do start to think, 'You know is this it? Is this what's going to be like, forever?' But it's not, you know, it does end and it does get better.

And it certainly did improved once he started to go onto solids. He could cope with that so much better. Purely, I think, because it's not this constant sucking, you know, he could have mouthful of food and have a break and breathe. And then have another mouthful of food, you know, and he certainly coped with that a lot better than the milk.
 

Recalls the dilemma when her baby brought up his medicine, but says it gets better as they get older and now her 3-year-old takes his medicine in the oral syringe himself.

And it's this awful sort of thing, where, you know, you've got this battle to try and get a feed down him and then you're trying to pick the right moment to give him his medicine, you know so that he's not going to be sick. And you manage to get some feed down him then you manage to get the medicine down him and then he's violently sick and you think all that's all gone, its all wasted really. But that's how it was and it was just this battle really to sort of try and get the timing right and at one time, I think he was on 13 lots of medicine a day, at one time. 

You know, you have to write everything down and just the whole day, it's on your mind, right I've got this, I have to do that, you know and planning out when you are going to try and do it and fitting it in between feeds of other babies and toddlers, and cooking and cleaning and nappy changing, and you know, trying to fit it all in, it's hard. But, you do do it, somehow you get through it but he did have a lot of sickness. Sometimes you'd think, well he's had his medicine but he's been sick, do I give it to him again. And sometimes it meant phone calls to the hospital to check, you know, well he's had this but he's just been sick, do I do it again or do I leave it until tomorrow or 'til the next dose? And again with the medicine, you do tend to think, my god, is this it, you know, is there ever go to be an end to this. It's just this sort of battle, he didn't want it, he'd scream, he'd fight, you know, he's pushing it away and you know, you think well, what do I do? do I literally shove it down his throat or do I leave it for now and come back later, you know. But you do get used to it and you get better at doing it and now he does it himself. I put it in the syringe and he, he actually comes out and sort of practically asks me, where's my medicine, then? I mean, now he's just on, he's on warfarin now and still on the penicillin. I mean in between times, he's been on various other things for you know, he suffered quite a bit with urine infections at one time. So he was on medicine for that, trimethoprim. But that at the moment, touch wood, seems to be OK, so they've taken him off of the trimethoprim so he's just on the penicillin and the warfarin and that's just once a day. So we just have that sort of before bedtime, really.  

And as I say, now he just takes the syringe off me and he does it himself and he thinks he's very clever, you know. We have great fun because he likes to sit on the worktop and then try and throw the syringes into the bowl and it's all great fun. 
 

Describes mixed emotions of wanting her son to have got his operation over with while on the other hand wanting it never to happen.

And as I say you have regular checkups, well he's got to have another operation, but at the moment we don't know when.  It's a question, it's a waiting game to see how he is and it's a question of catching him before he becomes too poorly, but waiting as long as possible 'til he's as big as possible. And that's quite hard as well. Sometimes I think I want him to have the operation. I want it to be over and done with, and then other days, I think, oh, no, let's wait as long as possible, let's put it off, put it off. So it, that's quite difficult, again.

Yes, so sometimes you just think, let's get it all out of the way, because it's sort of looming over you all the time. I have evenings sometimes when I sit down and it comes into your mind and you can't get it out of your mind, and you're thinking, oh what you've got to go through, the worry that you're going to go through, and you have visions of that walk into, taking him to theatre and handing him over and also now because he's that much older, I think the next operation will be the worst because he's going to be far more aware, last time he was just a baby. He didn't have a clue what was happening, so there was no sort of stress for him, if you like.  

But this time, he is going to be aware and he's going to know what's going on, and I'm going to have to explain to him and he's going to be a lot more frightened. And as I say, sometimes you just think, oh, well, let's please, you almost hope sometimes when you go for a check up that they're going to say, 'I think now's the time.' And then on the other hand, the other side of you just saying, 'oh, but if we put it, lets put it off, put it off, put it off, you know, so, it is quite hard that's one thing that sort of plays with on your mind a lot. 

 

Describes anxieties about sibling rivalry and how the hospital made sure children had fun when they had to accompany their sibling to clinics.

He coped with it very well I mean, when, when Sam was born, he was 20 months old, so it was going to be quite difficult anyway just purely having twins. Two babies coming into the family, from having solely my total attention all the time to having very little attention and he did cope with it very well. We had the odd spells where, you know, he got a little bit jealous and it was difficult to juggle my time. I just didn't, I could have done with two more of me really and it was very difficult. That was one thing that used to upset me quite a lot because you know I wanted to spend time with the others and I just couldn't. But I don't, although we were obviously up and down to the hospital and lots of you know, trauma going on if you like, I don't think it probably affected him a lot more than if it would have done just purely if I'd had twins, you know. 

Yes, you know, there was a lot going on and a lot to cope with and you know he was being dragged to the hospital and that but, in I think in some ways that possibly, funny thing to say, but possibly helped a little bit because for him, I think he found it quite exciting. There were lots of nurses around, making a fuss of him and playing with him and there's a big playroom on the ward and he thoroughly enjoyed that. So, yes I mean it was hard for him, but I think, it would just of, it would have been as hard if it was just, a pure fact of having twins really, so I don't think it affected him in a great way. He doesn't seem to have any ill effects from it.

The only problem I found now is we don't go to the hospital so much and they actually miss it, because they used to enjoy all the playroom and everything and there's never a problem if I say, you know, we have to go to hospital today and there's never a problem that they don't want to go. You know, they're quite happy to go and its usually a comment like, 'oh can I play with the train set when we get there? And can we do some painting today or colouring, you know, so it doesn't seem to have had any ill effects on him that way. He's not frightened of hospitals not concerned with going on the ward. He's quite happy with that, you know and yeah I really don't think, as I say, I think at the time, yes, you know, it was hard to juggle the time, to spend with him, and but I think that would have been difficult just purely having two babies coming into the family really. So, not really too bad.

 

She comments that her son knows his physical limitations and he'll sit down and do a jigsaw or puzzle.

They have a session at the end where they sort of play with the bikes and things like that, and he's quite happy to join in there. But he won't race around like the others will. In some ways it's quite nice because he's not quite as hectic, you know. But he just, he seems to know his own limitations, you know, when he's had enough, he will sit down, you know. 

Sometimes I feel he, maybe he feels that he's missing out a little bit, especially in the summer when we're in the garden, you know and they're all playing and you can see he's like, I can't quite cope with this. I've had enough. But I then just tend to sort of spend a little bit of time with him and we sit and watch the others, and we laugh or we'll do something else, you know. He is quite a one, he'll love to sit down and do a jigsaw. So if the others are racing around in the garden or something and he's had enough, we'll come in and we sit down and we'll do a puzzle. He likes that, so. But all in all, he's very well and he can do just about anything that the others do.