Interview CH07

Age at interview: 3

Brief Outline:

Felix was diagnosed with Hypoplastic Left Ventricle, VSD, Mitral Atresia, Pulmonary Atresia, Right Atrial Isomerism, aorta arising from the right ventricle, TAPVD and Bilateral Superior Vena Cava and no spleen. Treatment: modified BT shunt (6 days old) open heart surgery (3 months and 6 months), 1st stage Fontan (10 months). Further surgery planned. Current medication: warfarin, enanapril, frusemide, penicillin.

Background:

Diagnosed during pregnancy (32 weeks). Parents' marital status: married. Occupation: Mother-Civil Servant, Father-Police Officer. Other children: two older children and a younger sister. The family live close by to a specialist hospital.

They sought a second opinion so that they could decide which hospital to have their son treated at.

Mother: It has but when he was initially diagnosed that was at the local hospital. but because he was diagnosed antenatally we asked our GP whether we could actually have a second opinion at another hospital outside of our area. He did a referral for us so we did actually go to another hospital and we did seek a second opinion. So we actually had the choice whether to have Felix treated in the city that we live in or outside of the city and we elected to have him treated locally. and, so from that point of view although it was a huge shock having him diagnosed we felt that [um] it was to our advantage in that we made an informed choice about his treatment. And if it hadn't been diagnosed until after he'd been born then we'd have been in the position where we wouldn't have had time to do that. And I think that stood us in good stead really.

I phoned all the, the numbers that are in the telephone directory relating to, British Heart Foundation I think was the first one and then they put me in touch with I think it was Heartline and Left Heart Matters as well, in [city]. Which at that time dealt specifically with children with Hypoplastic Left Heart and they have them, well they have their own newsletter - don't they? - but they actually have a booklet that they will issue to parents that have got children with cardiac problems and that had all sorts of information in. So, so we looked, we did look at that but we didn't, we didn't look at any other hospitals, did we?

Father: No I think that time was the essence and it was running out really. and we had to make a quick, a quickish decision. and with having two other children I mean who were still at school we had to make that decision quickly to say where are we going to go.

Mother: The other thing is as well that at the time we would have chosen to have him treated wherever we thought he was going to receive the best treatment and as it was we chose our, our hometown. But if we'd have thought he'd got better treatment elsewhere we would have gone elsewhere but I don't think we actually realised that at the time that if we'd have chosen to have him treated away from home the impact that that would have had on our home life because for 10 months we were in and out of hospital all the time and it did cause disruption.
 

They organised medicine times to avoid having to wake their baby during the night.

Father: It's always fear of the unknown really. I think the first time we came home from [the specialist hospital] and you're presented with all this medication and your head's spinning anyway, till you get a grip of things. But they gave us all this medication and double checking, triple checking that you're giving the right amounts at the right times. I think it, it was a very frightening experience coming home for the first time because you'd been in hospital, which was a safe environment. Doctors and nurses there on call. I mean you come home and then 'bumpf' it's down to you and, you know, you alone have got a seriously ill child and you've got to look after them. But like most things you'll find within, within a week or so it just becomes the norm. So yeah, it is if you're thinking about it, it is a normal reaction to be frightened but it will become the norm.

And what medications was he on?  

Father: He's been, he's been on various medication but at the moment he's on, he's on warfarin, enalapril and he's just gone onto that and that's replacing captopril. The captopril was a bit awkward because he's had that 3 times a day with a 6 hour gap in between which meant it was really interrupting with sleep, so we we were making the captopril up the night before, so first, when he first woke up we could quickly syringe that into his mouth otherwise if you don't give it to him till 9 o'clock, 10 o'clock in the morning, then the second and third doses weren't going to be later on in the evening.
 

Their son's consultant is very open and honest with them and accessible.

Father: And that's one of the big plus points, you feel that you, having read about Bristol and the surgeon there wants them to I don't know actually being narrow, narrow minded and just wants to get on with things himself, Felix's surgeon appears to us to explore all avenues and is willing to take on as much advice as possible.

And he is very, very open. He's not, or we certainly didn't feel, our experience is that they're not, haven't been guarded in anything that they've said to us and if we've asked things, they have been very informative and have gone out of their way, haven't they? [Father' Hmm]. yeah to give us all the information that we've wanted and, and they are accessible to you. It's not just you, your appointments, if you've got any problems between appointments then you can get to speak, certainly get to speak to the cardiologist on the telephone or actually go and see them at very short notice.
 

Describes impact on their home life when their son was in hospital and later having to make frequent hospital visits.

Mother: The other thing is as well that at the time we would have chosen to have him treated wherever we thought he was going to receive the best treatment and as it was we chose our, our home town. But if we'd have thought he'd got better treatment elsewhere we would have gone elsewhere but I don't think we actually realised that at the time that if we'd have chosen to have him treated away from home the impact that that would have had on our home life because for 10 months we were in and out of hospital all the time and it did cause disruption.

Father: You were resident weren't you?

Mother: I mean I was living there, but because we were only living 10 minutes away from the hospital the children were still, our other children were still able to visit us and they were still able to have their tea with us sometimes and we were still able to do their homework with them. But if we'd been in any other city we'd have, I suppose we'd have had to have coped but the effect that it would have had on your home life would have just been phenomenal. And although Felix is doing well at the moment you are still backwards and forwards to Warfarin clinic and you are still backwards and forwards for hospital appointments and really it just wouldn't have been practical. I think that we'd have, if he'd have been  being treated at another hospital long term we'd have had to have seriously considered moving nearer to, to where he was being.
 

They feel their older children have adapted well and they haven’t suffered any long-term adverse affects.

Once we knew about Felix, well we actually went on holiday the following day for a week and we, we just told them the truth really that he, that he, he had a bad heart and that he'd need to have surgery when he was born and that we didn't know whether they would be able to make him better or not but that they would do his very best. And we did say to them that we didn't know whether, whether he would live or not. And they know that the condition he's got that it can't be corrected, that you know they can alleviate the problem, but they know that long term he's never going to be exactly like they are.

But they've been very accepting really. You know, they've adapted well and although you know for those, really the first 10 months although there was a lot of disruption we were fortunate in that we still saw them every day. My mum was very good, she helped them a lot of the time. And I wouldn't say that it has had any real adverse affect on them but, but Felix has taken up a lot of, a lot of time and as a result we've probably had less time to devote to them and he's not, he's not a bad sleeper now but, but in the past, to establish any sort of sleeping pattern was very difficult so you would be sort of disturbed in the night for a lot longer than you'd expect with a baby without problems.
 

Their baby needed constant oxygen. It was made available all over their house and they insisted on being provided with small cylinders to use outside the house so that they could go out and about.

Father: One of, one of the things in the early months of his life is that he was oxygen dependent and he came home on oxygen and that resulted in us having oxygen cylinders all over the house and eventually an oxygen machine so that we could pipe it round to whichever room. But one of the biggest things, which we thought we'd have problem with at first was having enough of the smaller cylinders so that could be mobile and go out and about and because of the amount of oxygen that he was on generally meant we would be going out for a few hours and he needed 2 or 3 of these small bottles to take out. And one of the first query from the local GP practice was well we might not get funding for prescriptions for that amount of oxygen. So that my initial reaction was well he's come out of hospital and now he's possibly going to be a prisoner in his own home because he can't get funding for oxygen cylinders to take him out and about. But anyway, after a few phone calls that was, there wasn't a problem because at that stage I think we were having  was it 10 cylinders, small cylinders delivered each? Was it more? 10 to 15 each week. So we could still go out and about because it was summer and we didn't want to be stuck in in the summer.

Mother: I mean what I would say is that for anybody that was faced with that situation prior to Felix being on oxygen I really thought that was one of the worst things that could happen. From a, a practical point of view really but once we were actually faced with it and we brought him home, I mean it was for four, was it four months? [Father: Hmm] It was actually very surprising how quickly you adapted. I mean once it was piped through the house it wasn't really a problem was it when we were in and because he was of an age where he wasn't mobile, he, he was quite good.  He didn't fiddle with them did he? too much and when, and when we went out we only ever had enough out with us for, was it six hours? [Father: Hmm]. 'Cos we'd take 3 cylinders 'cos he was on quite a high, a high amounts. You had to be sort of careful that you weren't too far away and that you had enough cylinders, but it didn't actually stop us doing anything did it? [Father: no].
 

She overcame her baby's feeding problems by using a combination of breast-feeding, expressed milk by oral syringe and supplements.

But in the early days as well, when he was diagnosed and he'd had his first lot of surgery the other huge concern is that in general babies with cardiac problems are slow to gain weight, they don't feed well and Felix was fed with a naso-gastric tube as they all tend to be when they're first born. He was very reluctant to take a bottle and he was slow to gain weight and when we came home initially he still had a naso-gastric tube and we were trying him - weren't we? - with a bottle as well. And I attempted to breast feed him. And initially we were just switching from one to the other and didn't seem to be getting anywhere. And eventually he did take to breast feeding and, and we ironed out his sort of feeding problems but it did take a long time and it took, and it took a lot of time as well because he'd only have very small amounts. You know, little and often and he was regularly sick. And you'd find that you'd no sooner finish one feed and wind him and you'd be ready to start the next one.  

And we had extra calories - didn't we? - to add into, we were giving him a bottle, to add into the bottle or if you were feeding him with a tube to put into the tube. But you used to find that he wasn't able to digest it very well and he'd, he'd sort of bring that up. And I think you find that most parents say the same thing, that there's that constant pressure all the time to get food down them so that they gain weight and it is a very slow process.

How did you overcome that?

Just persevering really but it was very, very time consuming and, I mean I did breast feed successfully but I felt that the support that you got with regard to feeding was actually very, very poor and the, I think it's the, I think it's the British Heart Foundation that are actually rewriting the feeding leaflet at the moment and they've consulted our local hospital about it and I have had some input into that. But at no time did anybody ever say that it was really even possible to breast feed a cardiac baby. Any literature that you were given was quite negative. 

But anyway when I came home I took the tube out and I actually fed him with an oral syringe. That was what we did at home. Through, through his mouth but, but in a controlled way and that isn't suitable for all children because sometimes they have reflux problems as well. I know that but that was what we did. And then when he went into hospital for subsequent surgery he did have the naso-gastric tube down immediately after surgery. But once he came off the ventilator I then insisted that he was then fed by an oral syringe. I expressed milk and then used my milk because it was easier for him to digest. And, and that was how he was fed. So I'd breast feed him when he had the energy and when he didn't I'd supplement it with the oral syringe. And that worked for us. 
 

She tried different bottles and teats which she got from CLAPA, but found that oral syringes worked best for her baby.

But I also got in touch with a charity called CLAPA, the Cleft Lip and Pallet Association because I'd seen somebody at our local hospital with a different type of bottle that was flexible and you could actually squeeze it. And the milk would go into the baby's mouth without it actually sucking. And I asked about it and was told that I couldn't have one unless I' had a referral to the speech therapist but at that time, in 1999, it, it took a long time for you to get a referral and by that time it would have been too late. So I rang up the manufacturer of the bottle because the brand, the name of the manufacturer was on the bottle. They gave me the details of CLAPA and CLAPA actually sent me all sorts of bottles and teats to try. And we used, we used the soft one - didn't we? - a few times. And then there's another one with a like a scoop and the milk goes down the scoop into the baby's mouth and, but as I say, ultimately I went back to the syringe but I did pass on the information to the local hospital and in the feeding leaflet that they're doing at the moment with the British Heart Federation that CLAPA's actually mentioned and when I phoned them they said that they do actually help families with children with feeding problems other than Cleft Lip and Pallet problems and I, I just wish that when I asked at the hospital that they'd have given that information more freely because for another parent that bottle could have been the difference between the baby feeding successfully with a bottle or ending up needing a gastrostopy which, I mean a lot of them do.
 

Comments that their other children visited them at the accommodation which gave them a sense of normality while their child was in hospital.

Mother: And I think as well when you're there for any length of time you actually lose touch with reality because your whole life revolves around the hospital you actually forget that there is life outside of the hospital.  I mean we were in the fortunate position that we had accommodation at the hospital and it was, it was pleasant accommodation so if you wanted to you had somewhere that you could retreat to.  But on saying that the only time we ever did retreat to the accommodation was to either go for something to eat, go and get washed or the children came. When Felix was in intensive care we never ever took them into intensive care so if he wasn't on the ward and they came then we'd go and visit them in the accommodation that we had.  It did help - didn't it? - having, having that accommodation [Father' Hmm]. That did give you sort of some sense of normality.
 

Describe their anxiety on moving from a one to one intensive care environment to the high dependency unit of the ward.

Mother: I think the difficult part is as they start, start to improve, is when they say 'Oh we'll now move them back onto the ward'. And in one respect you think 'Oh this is great, it's a positive step that they're going back onto the ward. He must be getting better'. But in another way you're not in a hurry to get back onto the ward because you realise that once you're back on the ward there's a greater ratio of patients to, there's, there's more patients for each nurse to look after. There's not one-to-one is there? And you lose that sense of security. I think we felt more inclined to be able to leave him - didn't we? - on intensive care for short spells.

Father: Yes not that we often did...

Mother: Not that we often did but I think I felt more secure coming away for a cup of coffee or whatever than I did on the ward because on the ward there's a lot going on.  You've got visitors in and out all the time and you're having to answer the door buzzer, you've got phones ringing [um] and you know, you've got a lot of young babies that all need feeding at the same time and you just feel that if something does go wrong there's not that same security there. it's, it's a big transition, isn't it  [Father' Hmm]. But I think parents...

Father: You're going from being hooked up and leads and monitors and tubes everywhere and all sorts of readings and the nurse sat at the bottom of your table to moving back to the high dependency unit of ward but a lot of the tubes and machines have gone [Mother' It's'] it is, it's a mixed emotion though generally it's, it's a positive one because you think 'Well, we're heading in the right direction...'

Mother: 'Cos you know you're going in the right direction...

Father: But there's also that worry that if that well if something happens is it going to be noticed.
 

Describes the post-op complications their baby had when he was in intensive care after two of his operation.

Mother: And he had, he had a pericardial infusion and they put a line in to drain the fluid away from the heart and the line, they, they thought that, they think what caused it is, that it was actually irritating the heart so his blood pressure just started to, to crash and they didn't know what was causing it. Anyway they, they pulled the line out quick and fortunately they think that was what was causing the problem and [Father' stable] he then stabilised again but at that time I was, it was in the middle of the night, wasn't it? And I was at the hospital accommodation and came over and I didn't go in, I waited outside and they stabilised him. But I had to phone [my husband] and then there was, after he'd had the surgery in September - that was when he had the shunt done wasn't it? [Father' Hmm] - and then in the December when he was in having surgery again, he'd, he'd had surgery and he, he'd come out of surgery and he was back on intensive care and he was on the ventilator. We'd been to see him and he was stable and they were happy with him and so we'd gone down to have a bite to eat in the canteen and 10 minutes later we got a phone call to tell us to go back up to intensive care and that he'd gone into cardiac arrest. And we'd only seen him 10 minutes before and he was OK and on that occasion his, they, they said that they thought that he'd possibly, possibly been over-ventilated, [Father' Hmm] was it? And they brought him back and he was all right. But that just, it just makes you realise how unpredictable it can be. You know.
 

Felt frightened at first of the responsibility of caring for their baby at home but said these feelings soon passed.

Father: It's always fear of the unknown really. I think the first time we came home from [the specialist hospital] and you're presented with all this medication and your head's spinning anyway, till you get a, a grip of things. But they gave us all this medication and double checking, triple checking that you're giving the right amounts at the right times. I think it, it was, it was a very frightening experience coming home for the first time because you'd been in hospital which was a safe environment. Doctors and nurses there on call. Then you come home and then 'bumpf' it's down to you and, you know, you alone have got a seriously ill child and you've got to look after them. But like most things you'll find within, within a week or so it just becomes the norm. So yeah, it is if you're, if you're thinking about it, it is a normal reaction to be frightened but it will become the norm.
 

This 3 year old is severely limited by a complex heart condition; He gets out of breath easily, has poor circulation, can’t walk far, has to avoid accidents because he is on warfarin and cannot get insurance for foreign holidays

I think on a day to day basis especially now we're coming to the winter it's the simple things, making sure he's warm enough. He is blue. He does get cold because his circulation isn't great. He tries to keep up with other kids, especially his older brothers, but he gets breathless very, very quickly. It's watching out that he doesn't get knocks and get, and gets cuts with him being on Warfarin. Holidays, OK everybody's not everybody's not able to go on a foreign holiday all the time but we used to go, we'd go on holidays that required a flight. He can't fly so we've had to rethink that. We'd go to, so we went to France. Then we'd got the problem over medical insurance and virtually you need to get a letter from God trying to get your medical insurance because they put all sorts of stipulations in why they're not going to cover you.

Getting round and about isn't it, really? He always needs to be in a pram although he's 3 now. OK, there are a lot of kids still in prams at 3 but he can't walk very far because he, he becomes breathless.