Interview CH10

Brief Outline: Their son was diagnosed with Transposition of the Great Arteries, ASD, VSD, Atrial Isomerism and Pulmonary Stenosis. He has Dextro cardia and Bronchial Isomerism. Treatment: none given yet, surgery planned for when their son is older. Current medication: ventolin & flixotide for asthma.

Background: Baby's age at interview: 21 months. Diagnosed during pregnancy (20 weeks). Marital status: married. Occupation: Mother-Health & Social Care Consultant, Father-IT Consultant. Parents have one older child. Family live within 10 miles of the specialist hospital.

She found it difficult not being able to do the first things for her newborn baby when he was...

Mother' But you, essentially after the birth what was really hard was that [our son] was taken away, he was put straightaway into the intensive care baby unit and, and [my husband] was actually sort of then dealing with it, he was the one that was going up, seeing the baby and you were the one that gave him his first bottle of milk because he then got transferred to another hospital quite a long way away. Because I was bleeding quite a lot I was...

Father'  Kept overnight.

Mother'  Kept in for a few days and so that was actually quite difficult to know that there were all these people who were doing the first things to my little baby. And that, and they were really enjoying it and having a nice time but I found that quite hard.

Father'  I can remember he went off to the other hospital in an ambulance by himself and that, that was quite hard, you known watching him go off.

Mother'  You know he was in an incubator, he had tubes absolutely everywhere that you could imagine and he was just you know completely, he was born and then put in this sort of incubator and just all alone really.

I think I was just really desperate to get out and I was actually in a ward where everybody else had their babies with them and I didn't and some of the midwives were great and others were kind of not that you know good. So I think I just, just really wanted to be there because I was getting phone calls from the hospital to say, 'What sort of milk powder do you want him on?' and 'Should we give him a bottle?' and 'I think that we're going to bath him now,' and things like that and it was just really, really hard not being there, not being able to do all of those little things.

And, and basically I was just feeling that all of, my daughter was being cared for by somebody else, my son was kind of over there, and I was just sitting there completely helpless not able to do anything really.

Describes feeling numb, devastated and shock when his wife told him that their unborn baby had a...

Pretty numb aren't you really you know. I can remember my mum had come down and you know it was, and my mum was really excited about getting, seeing the baby on the scan so they, I think you and your mum went for that scan didn't you, the initial scan. And I just, oh and then you phoned me at work and uh, yeah I was just sort of numb and devastated. You know because it was so far into the pregnancy as well so, yeah. Yeah pretty shocked.

They found that doctors provided a clinical picture but it was other parents who could offer information on what day to day life would be like.

Mother' Yes I mean I think there was sort of two stages really, the first stage was when I was diagnosed with having a, a child that was going to have a heart condition and at that stage, we weren't actually given any information about web sites and all the rest of it. Then once we'd decided that yes we were going to have the child because I had the amniocentesis and the amniocentesis, you know said that everything else was fine, he didn't have any other chromosomal disorders or anything.

We decided to have the child and it was only at that stage that we then went hunting for information. And, and it was sort of hunting, I think the most helpful people at that stage were probably the Children's Heart Federation who were able to send us quite kind of clear statistics and put us in touch with other parents and the cardiac liaison nurse as well you know gave telephone numbers of other parents.

And the most useful information actually was from other parents because I think that what we got was, this is the clinical picture and this is the percentage of kind of survival from an operation or whatever, and it wasn't a whole picture of that person.  It wasn't anything about the reality of actually this child is going to have a disability, there's going to be quite severe limitations to sort of day-to-day life etc., etc.

And it was only really through talking to other parents and the experiences that they had been through that we realised that it was going to be every day, that actually some children with the condition that [our son] was diagnosed with when he was in the womb he might end up in a wheelchairs, they might end up being so breathless that they can't even walk from out of the door to the bottom of the garden without being completely exhausted, or up the stairs.

And it was that, that sort of information you know that we really kind of, would have really helped at that stage to have made the decision rather than a kind of really clinical.

Father' Clinical yeah sort of the operation, the standard operation and generally everything will be fine, but it was always from a clinical point of view you know.
 

She finds the Heart Link Newsletter helpful in providing information and support.

It is but we're also getting more information from sort of voluntary organisations and support groups you know I guess, I guess as he's got older we've got involved with them a lot more. You know and that's, that's been quite a good source of information really. I mean I think that in particular you know getting the Heart Link Newsletter has been great from Heart Line you know that kind of real stories and experiences that people are going through. And to read something and for somebody else to say 'Actually yes you know my, my child also picks up everything under the sun and seems to have a cold every two weeks that then turns into a chest infection and you've got another set of antibiotics.' Just kind of makes you feel gosh yes this is normal and it's not just me.

Their involvement in community life has decreased because their son was often ill and was...

I think I mean the other things are that we just haven't been as mobile with [our son] as we were with [our daughter] so we have to really think about where we go on holiday and the time of the year and all of that.  And we just don't think about it, or didn't think about it with [our daughter]. Even we're part of quite an active kind of community, quite an active sort of social you know kind of stuff with weddings and festivals around Eid and friends who have things around the O... and stuff like that.  And I can honestly say that we've been to fewer things over the last sort of year and a half.  And you know there have been points when I see people and they say 'Gosh I haven't seen you for a year or whatever,' and that's because you know if [our son] is ill, you know I don't take him to crowded halls with two hundred or three hundred people because, you know my options are so much more limited as to what I can do with him and how he feels in that situation.

Felt people didn't understand the stress of caring for a sick child 24 hours a day & describes...

I think that there was one time when [my husband's] father was quite explicit about what he thought I should be doing and said that and he said that you know 'a mother needs to be looking after her children, she needs to be at home and they need you, [your son] needs you at the moment.'

And I just sat down and sort of explained to him that I'd worked very hard for my career it was very important to me but also at that time [our son] wasn't sleeping at all and he'd been really ill for quite a long time, and I just actually broke it down and went through it with him.  And I said you know 'he's awake all night, I'm awake all night with him and then if I have him all day as well I can't just keep going twenty-four hours a day, non-stop, seven days a week.' And I think it just made him think about it a little bit and, and think about what the reality of it you know might be.

Because I think sometimes its really easy for people, including my parents sometimes you know, you know my mother makes comments about how often I cook or don't cook or whatever.  And, you know when they're, they're very seldom here to see what the reality of the situation is like for you and how you can manage to fit in all of these various things and its just understanding that really. 

And I think that, I think that the other thing is you know at a practical level not to underestimate you know the impact and the level of organisation that you might need.  And I'd say to you know parents who are working don't kind of just think that the only option is to give up, you know if may feel really hard at times to carry on if you're not sleeping and you're going to work and child care feels like a nightmare. But you know persevere with it and if one thing doesn't feel right you know don't carry on with it, you know try and pursue other things.

Their son has still to have his first operation and they feel uncertain about the future but cope...

Father' It's a little bit uncertain really isn't it? Yeah, it really is with regard, with regard to him. Yes. I don't know its hard like, generally I'm fine and then if I start thinking about it I just start thinking about long term and then it all really becomes a little bit hazy, a little bit uncertain. Yeah so upsetting really but on a day to day, basically its just a day to day level that we go by really you know and its fine, its great, he's at home, he's running around and personally I just feel really, really glad that he hasn't had to sort of have any operations yet and he's still pre-op and he's at home. And we've, we spend quite a lot of time with him and we go on holiday and just enjoy him. It's been really nice. But then when I start thinking long term about post-op and, and what he's going to have to go through then that's quite upsetting. And I do bear that in mind with things like you know like, I've never mentally settled in [the city] because I always think eventually we're going to have to move closer to family because he's going to have to have his operation [another city] which is where my family is, just because that's where the support will be.

So it has had quite an impact on you?

Father' Yeah, yeah but as I say on a day to day level its fine.  Yeah, its really good, I've enjoyed having him here.

Mother' I think for me one of the hardest things was, before he was born, talking to one of the parents and actually saying that we have been told that our child is going to have, is not going to have a life expectancy beyond 30. And to think about that was quite sort of overwhelming. And when I asked the consultant that, he wasn't able to give a very straightforward answer to that. The research that's been done only kind of has been done for children who've had surgery and then fifteen years after that surgery. And so that's quite hard. At another level I think one of the ways in which I think I've learnt to cope with it is to live for the day much more and I think that's what I just really, really enjoy doing and I'm just enjoying doing more and more, spending time doing the little things and kind of planning things and trying to get as much in as I can really to enjoy him as much as I can. Because he's just, he's just brilliant really, he's got a fantastic sense of humour and he's really witty and funny and he and [our daughter] are just absolutely brilliant together as well.

She gave the nursery an information pack which she had compiled about her son's heart condition...

I think the things that I do now is kind of have a standard almost pack on information so I've got three sheets on the computer about [our son], his health, contacts, professionals that the person can get in touch with. I put in leaflets that I think might be helpful for them to read like the Children's Heart Booklet, things on feeding. He doesn't really need that now but I did do that at an earlier stage.

All of the emergency contact numbers, just simple things like signs and symptoms. '[our son] is ill if,' and then a list of bullet points. '[our son] is not ill if he goes blue, that's normal for [our son],' and just simple things like that, that you know somebody just wouldn't know if they hadn't you know looked after a child with this condition.

They describe their parents' reactions and explain that one of them found their reactions...

Mother' I think that my mum and dad, especially my dad, because it wasn't, they, they just assumed that it wasn't confirmed and everything might be all right and you know just wait and see what happens, and that it might go away. So that was their approach a little bit.

Father' That's still my mum and dad's approach, that's still, you know, they still think that he'll sort of recover miraculously. Yeah.

What's that like?

Father' Its, its fine in some ways you know, sort of its good, its, its just another viewpoint, in some ways its quite comforting, you know, you've got someone I guess practising some sort of old-style medicine or old-style hope. Someone's still holding hope out there, which is quite nice, yeah.

Mother' I think for me, I actually find it quite frustrating.

Father' Do you?

Mother' Yeah from my dad, you know who kind of says 'Everything's gonna be all right,' and I guess, you see my background is that I've worked in the NHS for a very long time, about twenty-five years, so I know a little bit more than maybe the average person. And I just know how traumatic it's going to be with the surgery and all the rest of it and that. And, and I do find it quite frustrating but at the same time I think it also helps to balance it a little bit because you know I kind of come from that background, I've actually worked you know on a paediatric ward and stuff and [my husband] had no idea.

And so even now I tend to be a bit more over-cautious and a bit over-protective whereas [my husband] tries to just treat him as normally as possible and that's really good for me, that's quite healthy I think.

Father' Yeah and I know from my mum and dad's point of view you know the fact that they think he may recover somehow is sort of based on love so I don't mind at all.  

That's fine.

Gives advice about getting the information you need from health professionals.

Mother'' I think that what I'd say is try and get as much information as possible. Don't be afraid to ask simple questions. Try and make a list of all the questions you want to ask, don't be afraid to go back. Even kind of being familiar with the NHS I felt quite intimidated when I was in that situation, very vulnerable, I felt as though I lost all my assertiveness and things that I had in my head that I wanted to ask and so I didn't you know end up asking. And its there for you, you know all the professionals are there to support you and just keep asking for things, just keep asking the questions. 

Father' And ask quite direct questions, because I mean we found they tended to sort of skirt around the issue of his life, life expectancy. You know we sort of approached it in three or four ways and in the end I just got fed up and said 'How long do you think he'll live? What age do you think he'll live to?' And that's when we got a straight answer. So yeah you know just ask direct questions if you have to you know be quite blunt. Its important that you know everything in terms of decisions that you make. 

Their son has many colds leading to coughing and vomiting during the winter months but this is...

Mother' I think, I think the one thing that I still find quite difficult and I haven't found an answer to is the fact that, and I don't know quite why it happens is that whenever he gets a cold he just can't seem to get rid of the phlegm. And its this sort of, the only way he seems to be able to clear it out of his system is through being sick and vomiting. And he only vomits because the coughing is so violent that it empties all the contents of his stomach and that's the only time then that the phlegm comes out in that.

And I just feel that I really would want to know is there an answer to this at all or is this gonna happen forever, is this because of his heart condition that you know whenever he has a slight cold or anything that 

Father' It just brings him down totally doesn't it?

Mother' Yeah completely, totally, he's out of action for about sort of seven to ten days and um, and its just amazing really, its just a cold or its just something really simple like that.

Father' It's just been a cold hasn't it really?

Mother' Yeah and he just totally goes down.

Father' Yeah, yeah.

And how often does he have colds?

Mother' Now its getting kind of less.

Father' A bit isn't it.

Mother' But winter's coming but I would say at least once every six weeks.

Explains that their son who has not yet had surgery, is not able to join in with all the things...

Mother' I think that the other thing that's a little bit more difficult as he gets older is that he, becomes much more aware and he's socialising more and he's got his little friends at nursery and that and he's got an older sister who is running around, bouncing everywhere, wants to do daredevily things with him like jump off the top bunk and stuff and he can't do it. He wants to join in and he can't do it and that's kind of him now having to deal with it.

And he's also learning to communicate as well in sort of short simple sentences and things and I think that's the thing that I'm finding quite hard is dealing with kind of you know his sadness in some ways at not being able to do some things or join in.

Father' He's pretty good though, he's not, I think he sort of realises he can't do as much and then he's fine you know if you just pick him up and make him rest he sort of realises he needs to rest. He is very good like that.

Mother' He sort of goes over into a crouching position and he does this quite a lot, when he knows he needs to rest or whatever he'll just, he'll just sort of bend down and it seems to be in either a squat position or crouching down.

Father' On the floor.