Interview CH12

Brief Outline: Their daughter was diagnosed with ostium primum Atrial Septal Defect (ASD). Treatment: Surgery at 18 months old to close the hole with a dacron patch. Stitches in the mitral valve. No further surgery planned. Current medication: none.

Background: Baby's age at interview: 3.5 years. Diagnosed during pregnancy (24 weeks). Parents' marital status: married. Occupation: Mother-Doctor, Father-Doctor. Other children: one older child. The family live close by to a specialist hospital.

Explains why they decided to have an amniocentesis and the positive benefits of it.

I mean the decision for the amniocentesis we thought that it was important to know exactly what she, well we were facing and she was facing really. And we thought that it would be really, we didn't know what we, you know, what, what we'd do depending the outcome but certainly we, we felt it was really important to know because we thought, well I thought in particular, I would find the whole pregnancy really, really hard and just, I would be really emotional and upset the whole pregnancy not knowing and the labour in particular would be awful because I would just not know. And I know with me it, for how I am, I'm always better if I know the facts than if I just imagining the worst. And so although it meant a procedure that had a risk to it that other, other people might've said  it was unnecessary, you could have just waited until you had the baby, but I, we needed to know and, and I felt so much better knowing that we would have an answer really. But that wouldn't be right for everyone and I appreciate that. A lot of people would feel that, you know, they wouldn't, they would rather just, you know, just live with that anxiety whatever but that's not how, how I am really.

And actually one very positive benefit from that was I then knew the baby's sex and I knew she was a girl and that was really important because I was just fixing on this baby with a problem, the baby with a heart problem who was going to need treatment and didn't know how serious it was going to be. And to actually know that it was a girl, I wouldn't have minded knowing it was a boy either, but suddenly somehow to know that I, I knew, I could really, really bond with her and it just felt very different. It felt much more sort of human and much more real really.

Describes the positive way the cardiologist handled communicating the results of her scan during...

I think that the one that stands out was the fetal cardiologist who made the diagnosis really in that she, she very quickly clearly knew exactly what the problem was and she stopped and she, you know, she stopped and she talked to me and I cried and, you know, she comforted me and we, we had that conversation and she said 'I need to, I have stopped now because I know that there's something really, you know, it is very serious and she, and she is likely to have an, need an operation and it is a significant heart problem. And I need to do a lot more, you know, the echo and to do a lot more but, I know that you're going to be worried because you're going to see me doing it. It's really important for me to talk to you at this stage before I do all that'. And that was so right, you know. And I've not seen that sort of thing before. I'd seen other situations where people have just gone on doing the investigation until the end before they've talked and parents have been terrified. So that, that was a really good way of doing it and, you know, she was very, very sensitive in the way that she handled it.

Information given to them by the fetal cardiologist had helped them to feel prepared for their...

And we also saw the fetal cardiologist, the sort of heart, the babies' heart specialist to make sure that, that everything was going OK from that point of view.  And she was able to prepare us about what was going to happen after birth and we were lucky in that the hospital we were booked into did actually, was actually quite a, a specialist hospital. Well it's quite a big teaching hospital anyway so we were happy that that was a safe place to deliver and if there were any problems you, you know, they had a good special care baby unit there. 

And it was uncertain really whether she would need to give, it depended a lot on how she, her condition when she delivered and that some babies with her problem might have needed to go to special care and be sort of stabilised, some might actually be quite poorly, they might actually need an operation very quickly and in the first couple of days.  But the majority of, of babies, that was very unlikely and probably, you know, we would just follow her up and, and, and have the operation at a later sort of stage.

So we felt quite well prepared for what was going to happen but obviously still quite scared that she might end up needing something quite quickly. And in fact when she was born, so I had a normal delivery, and when she was born she was in really good condition. She cried immediately she came out, she wasn't blue, she was great really. And they wanted me to stay in for a few days just to kind of monitor things so I sort of stayed in 3 or 4 days but she was fine and feeding well and everything.  So no problems, we just went home with a sort of outpatients to see somebody at a month.

When the baby was born, were you able to hold her and to ...

Yeah, yeah.

Did she stay with you?

Yes she did. We were very lucky. I mean, we had a very sensible paediatrician who, who was at the birth because obviously there were concerns that she might come out completely blue and, and need resuscitation but she came out screaming and pink. And very sensible paediatrician who put her in a, you know, said 'Put her, give her to mum' immediately. And let me have a cuddle and everything and then she sort of had a listen to her and had a look at her and she said 'No she's fine, she can come with you and we'll see her tomorrow sort of thing.' So, yeah, so, I think she was quite experienced and she was, you know, took it in her stride and said yeah she's a healthy baby and so.

Feels it is important that people at work should know what you are going through.

But everyone was really, I mean work were great and said 'Take as much time as you need'. So all those things even though they're not, you know, they're not providing immediate sort of support at, at the coal face as it were it's really important to know that everyone's saying 'We're thinking of you', and, 'Take the time you need', and lots of people sent great books that they had. 'Oh this is a fantastic book, you'll be able to read it even though you'll be really upset or whatever'. So I got sent lots of things to kind of occupy me and things and that was good.

I think it's important to talk to people about it. I mean I know that depends on how you are as a person. I know a lot of people are a lot, probably a lot more private than we are but I think even though it might be hard to talk about it and it might be upsetting, actually it does help because actually being honest with people about what's happening, when it's going to happen, the uncertainty of it all and things is really helpful. Because even though you might be 'Oh why should I tell people at work?' this is very personal actually it is important because it's going to affect your ability to be at work, your performance and things like that and I think probably being open about what's happening it was really helpful for us anyway because it meant that people could offer support and I would always do the same again I think. 

Describes the support she received from her GP.

We had great, great support from my GP actually. We did. As I said we moved house actually, we moved to a different area before her operation so we were on the waiting list and so when we moved in I went to see the GP and said, 'This is my daughter and she's got this problem' and I brought the letters from the hospital and, it's a lot to kind of present a GP with,  she's got this complex lesion, she needs this operation, whatever. And the GP was great. He said, 'That's fine. How can I help, what can I do?' He was, was really sort of supportive. When we needed drugs when we came out of hospital they got them for us straight away and, they, they were very help, helpful.

And they've  always probably seen her quite quickly if she's had any problem because they know that she does have a heart history as well. So they probably have been very supportive in that way.

Describes the temporary impact on their daily life around the time of their daughter's operation...

OK. And, has there been any impact on your daily life, your family life?

Mother' I mean obviously there was, you know, around the time of the operation we felt we couldn't plan. Leading up to it we didn't know when it was going to be, it kept being cancelled and we felt you couldn't plan things and I, certainly, work-wise I took on different, I mean I worked a lot less, you know, and, and didn't take on work because I wasn't sure about what, you know, what was going to happen.

And obviously afterwards when she was poorly and needed me around a lot that's, that, you know, it obviously did have an impact then. But not, not now it doesn't, no. I mean, I don't think we would treat her any differently from... Obviously having children has an impact on your daily life but it's no, no different from having two young children, no. We don't treat her in any different way now.

They felt they were in limbo while they were waiting for an operation date.

I mean obviously there was around the time of the operation we felt we couldn't plan. Leading up to it we didn't know when it was going to be, it kept being cancelled and we felt you couldn't plan things and I, certainly, work-wise I took on different, I mean I worked a lot less and didn't take on work because I wasn't sure about what was going to happen.

Looking back it seems a very short time really all of that. But at the time it seemed a really long time and at the time each month that you're waiting seems ages. And she was well. I mean we were lucky, she was a well child who was waiting for it.  It's just that we felt we couldn't really get on with our lives and things until we'd done it because it was such a big thing. And she might die or she might have a really bad complication so how can you plan anything until you know that that's been done. But for children who are actually ill and suffering that must be so hard.

Explains that her two year old daughter was okay about being at the hospital outpatients but she...

It'd be interesting because we've got another one in a month's time so. I think now she probably will be a bit better but at the last one that she went to, I don't think it was the hospital, this time, I don't think she had any recollection of the hospital at the last time that we went. She was fine about going in and in fact because it's the children's hospital it's got lots of toys, lots of things that are really exciting. She was quite happy about being there and being in the outpatients but she didn't like having the echo done. She was, you know, even though they do lots of things to distract them and they have sort of slides on the ceiling for them to watch and things she didn't want to lie down and she didn't want to keep still and she was, it was very hard to get her to have the examination done but I think now, that was nearly a year ago. I think now knowing how she is and I think she'll be fine actually this time, I think. You know, take a good book or one of her dollies she'll be alright about it I think. She's just a lot more sensible about it. Something about two, two year old's where they're not very sensible whereas somehow at 3 1/2 they're a lot more chilled out.

After her daughter's correctives surgery she feels very positive about the future.

Very, very positively. I know that she's going to need follow up and I know that she does still have a small lesion/hole there so she's going to have to, always have to be careful. We have to make sure that we tell the dentist, every time we go because if we ever do, if she has any procedures done it's important that they know so that she can get antibiotics. There are small kind of things but in general I'm optimistic. I hope the hole will stay the same size or get smaller so she doesn't need another procedure but even if she does need another procedure, it's not likely to be anywhere near as dangerous and risky as the one she's already had so, fingers crossed that, she might not need anything doing and, and the future's very positive.

Explains that it's difficult as a parent to consent to surgery when your child is happy and well.

But I think it was third attempt we did go in and they found a bed for us and we went in and were prepared for her operation. So I think at that point she was 18 months and it was quite hard. It was quite hard for the family. We were terrified about the complications from it. We knew that there was a risk, a small risk but a risk of mortality with it, of her dying. And also a risk of things like stroke, of her having. So it's a hard thing to put your child who is actually very well, beautiful, lovely 18 month old little girl who's chatting away and very much part of your family, put her into something that you know is for her own good and that she'll have significant problems all her life if you don't. But it's a very, very difficult thing to do.

Explains making the decision to consent to their daughter's operation.

And with surgery, it, again it was hard because you, it was hard on one level because you have got this lovely healthy baby and you're putting them through a procedure, which has got risk and pain and everything attached to it, but on the other hand the alternatives are worse. I mean, I want her to grow up and have every opportunity in life and to have a normal, you know, life expectancy and things you know and I certainly couldn't have, you know, put any alternative on her whereby she wouldn't have those opportunities because, you know, either in adolescence or as a young woman she would have terrible you know, heart failure and respiratory problems because of her defect not having been fixed. So it was, at one level it was an easy decision because there was no alternative but it, you still feel bad about putting her through this operation.

So for us, the important thing was to optimise the time at which she had it and that's the kind of control you have, and so we took advice on that from, you know, different people that, you know, although you want to have it as soon as possible we recognised that she was much safer waiting until she was over one because then the risks for the operation are, are much smaller because she's bigger and can take an operation much better. And so you handle that difficult decision by I think optimising the things that you do have control over, you know, which are the timing and things.

Describes the effect on her son of his younger sister's heart condition.

I think, I think it's really important to talk to the other children about, you know, obviously what tends to, I expect what tends to happen is that your other children are older, certainly in our situation that, that was what so even from the beginning he knew that she had problems. So I don't think he was aware in the pregnancy or whatever but fairly shortly afterwards we were going up to the hospital with her, to the specialist hospital, and he didn't always come with us. Sometimes he came with us, sometimes he didn't but we always told him where we were going and why we were going, that we knew that she would need an operation and he had some understanding of what an operation meant. He'd sort of seen other people who'd had other operations or whatever so he even from very, from when she was very young he knew that that would happen so he wasn't sort of totally shocked when it did happen. We said, you know, 'Granny and granddad came and stayed with you when mummy had your sister. They'll come and stay with you in the same way when, when she goes into hospital for her operation'. So he, he sort of knew that that would happen and it wasn't a big sort of surprise to him.  

He still found it hard. He still felt, I think he felt really worried about her actually. I mean, he, he, you know, he obviously he felt a bit left out as well and that was part of it but I think he genuinely, when he saw her, certainly when he saw her after the operation, obviously we didn't let him see her when she was on the, cardiac intensive care but when he saw her after the operation he saw how pale and tired and, you know, upset she was he, he was quite worried about her. He was scared for her I think. So it's important to involve them.

Has that changed over time?

Yes, he's, he totally treats her as a normal little sister now. Yes, I mean he is quite protective of her but I think he would have been anyway really because of the age difference between them, 3 years between them, I think he would always be a bit protective but, no, he doesn't, he, he doesn't, I mean he, he sometimes tells people [his sister] had an operation, she had a hole in her heart and it's been sewn up and things and she's got a scar. So, but he says it very matter of factly now. He, he obviously doesn't think that she needs any extra concern because of it, so.