Interview CH04

Age at interview: 3

Brief Outline: Their daughter was diagnosed with Truncus Arteriosus. Treatment: Surgery at 5 weeks old to fit a conduit and repair the hole. Cardiac catheterisation planned for pre-school. Current medication: captopril.

Background: Diagnosed at 5 weeks old. Parents' marital status: married. Occupation: Mother-Teacher, Father-Architect. Other children: one younger child (no heart problems). The family do not live very close to a specialist hospital.

For 5 weeks the health visitor told her she was being over anxious about her baby's symptoms. She saw her GP & was immediately referred to hospital where she was told there was only 48 hours to save her baby's life.

Alex was born due to a normal delivery. She was a normal weight and she was to all intents and purposes normal. She fed well and put on weight for the first two or three weeks of life and then she started to have problems feeding I was breast feeding at the time and I knew that there was something wrong.

Health Visitors and, and midwives didn't really pick up on it and felt that I was just having trouble breast-feeding. One day I decided, after she'd failed to put on weight, for one week, about the third week of life, I decided to bottle feed because I was worried that she was not feeding. I tried her bottle-feeding and she continued not to put on weight but now I could see measurable differences because I knew she wasn't getting the milk.

My Health Visitor said that it was because it was hot weather and things like that and not to worry. So I left it a further week.  Towards the fifth week I was worried because she still hadn't put any more weight on from two weeks old. In fact she'd lost and I was very worried about this. So I took her to see the GP at 5 weeks old and my GP looked at her briefly, made a phone call to the hospital, sent me immediately up to the hospital and said that she could have a heart problem.

OK, so going back to when your daughter had symptoms, were there any other symptoms apart from the not feeding well?

Although, thinking about it and looking back, she had cold hands and feet and I pointed this out and people sort of said 'Oh, an anxious mother'. She's, they, they, that what I was called at the time. I'm an anxious mother, don't worry about it too much. She had cold hands and feet which I suppose a lot of babies do that don't have heart conditions. A lot of babies that have feeding problems don't have heart conditions but I knew when I went to the hospital the one common symptom was the feeding problems. All the babies had feeding problems. But she had no other symptoms. Perhaps her chest was dipping a little bit but I wouldn't really have noticed that because this was my first baby and I didn't know what the chests of babies looked like.

But no other horrendous symptoms. No. But she was very, very seriously ill. And the surgeon said that we had less than 48 hours in which to save her life. So we didn't have that much to go on, so it was a massive shock, a massive shock.
 

She found information from a newspaper article through which she also discovered the Children's Heart Federation.

Actually just by chance I read an article in the Daily Mail a few weeks ago, months ago now, and it was about a child that had had a new type of valve in. Now valves are something that I'm interested in because Alex might need one and so it, it did say at the bottom phone the Heart, Children's Heart Federation. Now I didn't know that they existed which I don't know why. Maybe I'm not looking very well. And when I phoned them up they were brilliant and they sent me information and let me know a lot more than, than I didn't know. And Alex is three, so for 3 years I didn't know that information was there. So it was just by chance that I actually found out. And since then I've, I've noticed the Children's Heart Foundation, Federation, posters and things. So maybe they weren't up before, I don't know.

The best support she received was talking to another parent whose child had congenital heart disease.

The best support I've ever had is talking to actually a friend who's had another heart child. And that was, I'm never frightened of saying anything to her and she' isn't to me. So that's, that's probably the best source of support you can have really. I mean, more than family.

You say you're not frightened of saying anything to her?

That's right. You don't like to, I don't like to discuss how frightening or how awful a particular moment in hospital might have been. And I don't like to discuss it. But I can just mention it to her, she's, she's been there and she knows exactly what I mean. And she does the same with me as well. And we don't have to explain how awful or how good a certain moment is, because they know.
 

They felt very supported by the cardiac liaison nurse, intensive care and ward nurses.

There was a sister who was a liaison person, officer and she was very good. She used to come to us and see that we had got a bed for the night in the hospital. Basic practical things. She used to discuss what the consultant had told us that day, how Alex was doing and she would liaise basically with the medical staff and with us and she was a good support in the Intensive Care Unit, just for knowledge.

But I found that the greatest support in Intensive Care was probably the nurses. They were very good. As they treated Alex they would talk to us all the time and say 'That's OK, don't worry about that. That, that's just normal. We're going to this now'. And they were a huge source of support. And the ward as well. We would have nurses saying to 'Oh, truncus babies do very well you know'. And that made us feel a lot better, a lot better.  

Their daughter's truncus arteriosus does not have any practical impact on their daily life.

Alex's heart condition does not impact on our daily life apart from the fact that we have to give her powdered capsules. I'm very, very lucky to be able to say that it doesn't impact on our lives at all. We're very lucky because of the way she recovered from the operation. The operation was very successful and she's doing very well.  

The way we understand it is that we've got to look at it as she has a normal life and she will have normal health but she will have to have operations throughout her life. We don't know how many or when, we can't tell. Hopefully not too, not many at all. And so it's the psychological burden that you have to carry from day to day. And not the practical burden apart from the fact that the operations will obviously impact.

And what's the psychological burden?

Worrying about it. Just, it's worrying about it. 

He has to use holiday time to go to hospital appointments and she has to take unpaid leave. Her career plans have had to change.

One of the problems is that when he had to take to time off his employer gave him paid leave to start with but now with, with appointments and things we're worrying all the time. He has to take holiday time which of course means that we can't have as many holidays together. We've got to come to an arrangement when she is hospitalized again but, so that is another thing. I find it easier being part-time but I've got another child as well which is hard to, hard work to organise. But I am aware that you can have 14 weeks unpaid parental leave. Now that didn't come in for Alex, she's too old for that but the second child we had, actually we can use his time for her which seems a bit crazy really but if we're stuck that's what we're going to have to do. We're going have to take unpaid leave. Which is another thing we don't need but we've got to be there for her and probably I'm going to cut back on my work whereas perhaps I might of taken another route with my career. My career's definitely secondary now to hospital appointments. 

Comments that the hospital have always been available to speak to her when she had concerns about her baby and now that her daughter is older she finds it reassuring that that support is still available.

The hospital always, always talk to me. When Alex was very small, if she had a bad day feeding I would phone the hospital up. They would listen to me and they would, a sister-in-charge would talk to me, so that was always accessible and I feel it still is now. Although I haven't needed it, when I last went last week the consultant said 'If you are worried about Alex in any way, bring her back to us. We will see her at any time'.

Which is fantastic. And, you know, I haven't had to as yet but it's very nice to know that it, it's there available. At the end of the day my local hospital, my local GP, they don't know whether there's anything wrong with Alex's heart because only a scan where you can actually look at it will tell you that. And the nearest scanning machine is in the specialist hospital.

Explains that her priorities have changed and she appreciated things a lot more.

My outlook on life has totally changed, yes. Very difficult to describe how. I say I, my husband and lots of his friends, the year after Alex was treated, raised over '3500 for the hospital. And they did a big challenge and it was publicised and I can't imagine us doing that before. I appreciate things, appreciate much more than I'm sure I would have done. It's difficult because it clashes with the first time I was a mother as well and I think well, being a mother does change you but I'm sure that this experience has definitely changed me. I'm a lot more grateful for things and I just want a normal life. Where as, maybe before I would have wanted something extra. I just want a normal life now. You know, two happy children who are my priority in everything and my career definitely has, I was, I was offered a promotion when I went back after Alex was born and I turned it down and I don't know if I would have taken it if she hadn't of been ill. But it was something I'd worked for, for years and I had to turn it down. But I have no regrets about doing it but it's just a, difference that I think that the experience has made.

Getting pregnant again helped her through the first year after her daughter's diagnosis.

So anyway we had another baby and that was a huge lift. That was, we had to take him for checks. We had a specialist scan when he was 20 weeks in the womb. We were told that they'd seen the heart and it was fine. They also sent him up to the specialist hospital a few weeks' old but we knew there was nothing wrong with him because we've seen a heart child, we could, we could see that he, he wasn't a heart child, funnily enough. He was over 9lbs at birth and he was a really big baby that fed all the time so we didn't find it worrying. In fact it's been a huge help psychologically to have another one.

How has it been a help?

I suppose, how has it been a help, it's, it, the focus of our life cannot be the heart condition. We have a family. And I suppose it helped me through the first year of diagnosis, which I think is a difficult year. Because I had another baby to look forward to and I couldn't sit there depressed and thinking about it all the time. I just couldn't physically do it and especially when he was born. And he's another support. And he supports Alex, they're very, very close. And I know that when she has to have more treatment he's going to be a help. I don't know quite how it works but it does and I've known other people say to me that having another baby's helped. So, yes, we had one straightaway.

They monitored their baby's feeds on a 24 hour chart, which had helped them to feel that they were making some progress with bottle feeding.

No she never had a drip, she was always on the bottle. Which was a very good thing, we were very happy about that. She, she took a bottle almost immediately although it was a very difficult time because we were told to be careful of her feeding. If she wasn't feeding, putting on weight she would have to go back to the hospital. So it was a permanent worry and she was very fretful the first few weeks. She'd have a few good days and a few very fretful days. So I would think she was getting better and then she wouldn't feed very well and in the end I was very, getting very upset and very depressed about her feeding. She would scream through a lot of feeds and so my husband made a chart on the computer and, and it was a 24 hours chart and we'd have to write down how many ounces she'd, how she took it and when she had it. And we used to do this and add it up and see how many ounces she'd had. And actually when we did that we found that through the 24 hours she was expected to take oh, 24 ounces and although she had a few very bad feeds she would make up for it in another part of the day. So it helped me, you see my husband's very logical you see and when he was at work he would just say, 'Just write down how much she's had' and it was a really good thing. And I kept it going for some weeks and I wrote down exactly what she'd had. An if she had an ounce and I was very worried because she was screaming through it I wouldn't worry so much because I'd look back and think what she had before. So that was a great help really.
 

Tell how they overcame problems giving medicine to their baby - and that now she is 3 they don't let the medicines affect daily life.

We started to make two bottles up for her feed and in one bottle we'd put an ounce of milk and the medication and then if she didn't finish the rest of the feed it didn't matter, she'd had her medication first. And, but then we just plan now around mealtimes. The medication sits around the meal times now. It was difficult though and I think it's just something you just cope, go through. I remember holding her screaming in one hand because she wanted her milk, as a very young baby, trying to get the syringe and the bottle and the bottle smashed on the floor. Which doesn't sound too horrendous but this specialist medicine had to be ordered three weeks in advance from a specialist hospital so we did have our moments. But the problems just had to sort themselves out and they had to fit around us as well. I always feel that if I've forgotten her medication and we're out having a good time, say a picnic, I miss the medication. I've been told that it's OK, that she won't come to any harm if she misses one. I feel that it's important that she has a normal life and we don't live around the medication. It's got to fit in with us to a certain degree.
 

Describes their daughter being admitted to hospital when she was 5 weeks old and needing to have surgery within 48 hours.

From being, taking her to the GP the day before, having problems with feeding to having her on an oxygen monitor. The local consultant had a look at her and said that he wanted her to go to the specialist hospital that day. So we were taken up in an ambulance. My husband and I and my daughter and we were seen very quickly. We were given a heart scan which is available at the specialist centre and the heart scan gave very detailed results. And the registrar, I think it was a registrar who saw us, immediately said that there was something more seriously wrong. And that probably for me that was one of the worst times.

So he then called on his superior, the consultant and before long there was about several consultants, several registrars and a few students standing around looking at the scans and discussing it. And then the consultant sat us in a room and he said 'We've got a diagnosis'. Which was quite shocking. He, she was diagnosed with a condition called truncus arteriosus which means that she basically has an artery missing. And it is very rare although the specialist centre does have, see about 3 a year which is still not very many, considering it is a specialist centre. 

He was, he told me that she would need an operation within 48 hours and it, it was, it was quite detailed the sort of thing she'd need doing and they couldn't exactly tell us what she needed doing until she was in theatre. They didn't know exactly how bad or good it was going to be, which was very scary.

How were you feeling at that point?

Devastated. Devastated, yeah. Pretty much, that was probably the worst point, almost the worst point. And the, the doctor was very, very good. He was really, really good with us. And he kept saying, 'When you've stopped crying, I'm going to tell you a bit more'. And he, and he did and he kept coming back to me.  

So that night we went home and we left her in hospital, which was difficult, but she was sedated at that point. There was nothing we could do. We were asked to go home, get clothes and things, enough for two weeks because that was the amount of time that we would need to be spending in hospital at least. So we, we had to be practical at that point and go home.

The following morning was probably the very worst bit. That was before she went for the operation. And we just got through it because you don't have any choice. 
 

Describes her daughter's slow recovery in intensive care and how she finally came off the ventilator.

She was in Intensive Care for almost a week which is quite a long time to be Intensive Care. She was a baby that took a long time to recover from the operation. But that doesn't mean, as the doctors explained, it doesn't mean that they are not going to recover. It means that they, they, the body's taking a steady recovery. And actually, as it, as it happened she recovered extremely well but she did it slowly.

Her chest was kept open for two days after the operation, which doesn't mean it was literally open, the skin was sown and she had a bandage.  And it, it just meant that she was kept absolutely still and sedated. When her heart had recovered enough and her heart had reduced in size they came to the Intensive Care Unit and they didn't take her back to theatre, they closed her chest then. And from then on she gradually got stronger but it wasn't until five days after the operation that she, that she actually came out of sedation. She was in for a long time. They did it very slowly and I was, I thought it was going to be very frightening. And what happened was that the, the frightening bit, they gradually start to breath on their own, all these babies. There were lots of babies there. And they don't suddenly turn the machine off, the ventilator, they allow the child to breathe on their own gradually until they are actually breathing on their own. The worst bit is removing the tube.

Now we used to have about 6 or 7 hours sleep and we used to come onto the ward at 7 o'clock in the morning and they removed the tube at about 6.30 before we got there and it was great, it was great. Because it was done, she was breathing, she was still very still and she was immobilized. She doesn't just have sedation. You're immobilize as well because obviously it would be very dangerous to move at that point. But that was gradually wearing off and although she was still under sedation and asleep she was starting to move and we would just see flickers, flickers of fingers.  
 

She didn't tell the playgroup that her daughter has a heart condition because she didn't want them to treat her any differently.

And then we were given monthly appointments, which was a big step and from that point really everything has been as normal, as with any other child. You know, the operation period of about a month was, was very, very, very difficult but when it comes to Alex's physical needs she's just like any other child. Apart from the fact that she has got a heart condition that will need long term monitoring and treatment. When it comes to day to day feeding, growing, playing, moving she's just like any other child. She's now at playgroup and playgroup do not know that she has a heart condition. This is a very conscious decision of mine that I don't want her to be labelled as, 'the heart child' because people don't really understand very well what a heart child is these days. I think they tend to think that a lot of heart children sit in the corner, can't do P.E. and have blue lips all the time. That isn't the case with all heart children. In fact a lot of them lead perfectly normal lives. I don't want people to treat her any differently. That's a desperate need of mine.