Interview CH13

Age at interview: 1

Brief Outline: Joshua was diagnosed with Atrioventricular Septal Defect (AVSD) and Down's syndrome. Treatment: surgery at 4 months to repair his AVSD. No further treatment planned. Current medication: aspirin.

Background: Diagnosed at 2 days old. Parents' marital status: married. Occupation: Mother-Children's Book Designer, Father-Advertising. Other children: no other children. The family live close by to a specialist hospital.

They didn't want too much information and chose instead to focus on spending time with their son.

Mother' Mainly from the hospital where he had the operation. I have to say, I mean, none of us, I mean, when I was pregnant, we didn't do a huge amount of reading, did we?  We didn't sort of, just in terms of having a baby. In terms of Joshua's heart condition, we, we I can't remember, did we. I mean, they, at the hospital, they were very clear actually about they told us exactly what it was. I mean when I said I didn't get a huge amount of information that was at a different hospital where this kind of thing isn't their you know, they don't specialise in that area. So once the diagnosis was made, they were very good, you know, and the consultants talked through everything with us at all stages, and we were quite clear in our heads what it was that was the problem. So I would say most of the information came from the hospital itself. From the consultants, I mean, I guess if you want to read up on these things the information is there but I have to say I didn't read, I mean, it was very hard because I was also coming to terms with the fact that I was a mum and you know that's a full time job, so just reading anyway was not, you know, was not, it didn't come in to the equation for me. I mean, I think [my husband] probably had a bit more time, you know, on the tube, going to and from work and things, but...

Father'...I mean, it was Christmas when, yeah, Josh was born in November, and it was Christmas, a month later and the last thing, you know, I try and remember when we actually knew, knew we were actually going to have an operation. ...

Mother'...it was before Christmas, we knew, yes...

Father'...and I think the last thing we wanted to do was actually sort of go well you know. I mean we did, we went through a number of things, we actually had, we actually arranged for Josh to be christened before the operation only because, you know, not, not because we're overly sort of like religious. I think it was, it was just a nice way of getting the family together to spend some time with Josh. Because we didn't know what the outcome was gonna be. You know in, in any operation, there is always going to be sort of kind of like a, you know, a happy ending and a sad one. Possibly there's always that element and we just wanted to make the most of the time we got with Josh. And the last thing we wanted to be doing was pouring over books. I mean, we, you know we can't, at the end of the day we can't, we couldn't change anything. 

Follow-up appointments remind them of what their son has gone through and his mother says she...

Father' it's funny because they, you know, Josh's operation, I mean, you can't, we can't thank people enough for it. You know, what's, what's actually, you know what it has actually meant. But you do, I think, it's when you go back to the hospital, when you've got to keep going back to the hospital it's almost like a, a remembrance. [Mother' Yes] It just serves as a reminder of what Josh has been through and you go through'

Mother' I don't, I get very nervous when he goes back for his check, check ups at the hospital where he had his heart op. I do get nervous before that. And I hate, and when he has his echo it's like, [my husband's] always the one that's sort of looking after him and, and, it's like, I don't, I find I just want to be, detach myself from it somehow. But, it's so far so good they've been fine thankfully '

Father' I think you just sort of think, well, it's almost like in the, the, you know, it's like an admittance of something actually happened, like something actually, you know, and you just, you just want to carry on with your life and '

 
Mother' Yes, you just want to put it behind you and not have to think about it any, any more. And like I say it's just the reminder of what he's been through.

Father' So I mean, the thing is again, you know, you, you were told, we were told at, right it's going to be 6 months the next time you visit and hopefully the time after that it might be well okay 12 months.

Comments that she has become more relaxed about minor illnesses after her baby's surgery because...

I mean he still is a very good baby, he does sleep through the night, and he is just very, very good and I am spoilt with him in that respect and people go, you know, I've had other people say to me 'Gosh I just want to talk to somebody who's had a nightmare first year' and I have had a nightmare first year but from a completely different perspective and much more life threatening and I don't know if that's made me more relaxed.  

I think people expect me to be an over-protective mother and quite stressed out about it but actually I think it's made me the other way. I think I'm quite relaxed about it now.  I think, well, you know, he's so, he's made of strong stuff. He's been through this, it's only a cold. And I'm not down the surgery with sort of every little cough and cold or sick he has. I just think children get these things, it's not worth stressing about it. And obviously I have to be careful that he doesn't get chest infections and I am, I will check him out if it persists but I'm not over-protective, I wouldn't say.  

Their relationship had become stronger through mutual respect and realising how reliant they were...

So what happened is it, I think from the point of view like the diagnosis of Down's syndrome and also the, the heart operation you, you suddenly realise, I suddenly realised how strong I, I noticed [my wife] is, I mean she, she, she does get upset as we both did. But I, I've actually sort of like, you can't, you know, you, I think you sort of suddenly discover why you, you know, why you ended up marrying someone and you, the admiration you've got because of the way she handled so many things. So I suppose I in a way was pretty glad that, as she had me, I had her as well. So, I think you do, you do realise how much, you know, you soon discover how reliant you are on your partner and how much, you know, you, you need each other as a family unit. It, it is something that although, it is a massive, it is a very difficult time, I think you do, it, it doesn't sort of like do anything like draw you, pull you, push you apart. It, it brings you together.

They were expecting their baby to be looking better when he was moved on to the ward and were...

Mother' I mean, initially he's on intensive care and then they move him to a high dependency ward. So, which is basically when he's off the ventilator isn't it. And he was on, I think he was on intensive care for 24 hours, maybe not quite that long.  Then they moved him overnight I think into the high dependency. And then he was back on the main ward and strangely enough it was the day he moved back on to the main ward that I got, he, that was day three post-op and that's when he, who, to me looked his worst [Father' Worst] because he, they were starting to wean him off the morphine and he just looked like a drug addict. It was awful. He, he, they, you know, we sort of, they said, 'Oh, you know, he's moved back onto, onto his ward'. So I kind of went up expecting to see my little boy no tubes, nothing and there he was wrapped in a blanket just look, looking shocked and sort of his eyes were all, you know, and, [Father' sort of...] I wasn't really prepared for that actually and I think maybe if somebody had warned me I would have been less distressed by it. 'Cos I just kept saying 'He just doesn't look...'. It didn't look like Joshua, it really didn't.

Father' He looked like he was going to be stealing other people's teddy bears and selling them [Mother' Yes] to raise cash for his, his morphine habit.

Mother' He, it really didn't look like him at all. But...

Felt relieved that surgery had been successful but nervous about administering medicine at home....

Mother' Yeah, so when Josh came home, I guess it was the, I was worried about 'cos he was still, he was on diuretics and I, you know, we had to give him the drugs which I must admit I was a little bit concerned about, you know because it's frightening, you know, 'What if I get it wrong?' and all the rest of it but they were very good. You know, they talked us all through it and you know, went through the exact, and it was all, you know, pretty straightforward so, and they always you know said 'If you've got any problems just ring the ward and we'll...' you know 'help, give you advice or whatever'. So it was, it was fine in that respect. So yeah, I mean, bringing him home, it was almost like having a new baby again really. Sort of, I don't know, it felt so good to bring him home. It was like having a new baby again, it was...

Father' I never thought we'd get there, I mean, I think, we're...

Mother' You didn't want to think to that stage, did you really?  

Father'You never, you never thought that it'd actually, you never, I think we'd never actually sort of seen that. You, like I say, you never actually see past the problem. You know, you only sort of see the problem and you can't, you don't, you know, it's just such a, it was such a huge thing to get, to get over that when we did come home it was just, it was just a hard, it was just, it was just, it felt really strange because we can't actually believe that we'd made it.