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Aaron and Rebecca - Interview 12

Age at interview: 34
Brief Outline: Aaron and Rebecca found out they were carriers for cystic fibrosis when Rebecca was pregnant and a scan showed a bowel blockage. Their daughter is five and apart from surgery following birth, a bronchoscopy and course of IV antibiotics, has been in good health.
Background: Aaron and Rebecca are married with one child aged 5. Ethnic background/nationality: Jewish.

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 Aaron and Rebecca found out they both carry the cystic fibrosis (CF) gene five years ago when Rebecca was pregnant. At around 30 weeks, they were told that the baby almost certainly had CF and were given reassuring information about what they would be dealing with and what they would have to do. Their daughter was born by caesarean section and transferred within hours to another hospital for an operation to clear her bowel. The operation was successful and since then, she has only been hospitalised on two occasions.

 
Their daughter has physiotherapy daily for twenty minutes, a prophylactic dose of antibiotics twice a day and a nebuliser for a few minutes. She manages this and her regular hospital appointments and monitoring very well. She has had a regular lung function test from three months and had a bronchoscopy at two years, which revealed mucus in one lung which has been removed.
 
The couple describe their daughter’s medical care as excellent and feel very well supported by their team of health professionals. Their religious requirements have also been met effectively. The hospital provides accommodation for the couple during Sabbath if necessary and there is a Sabbath room run by a Jewish charity. The Rabbi has answered their questions about various aspects of their daughter’s care and their community has also been very supportive.
 

The hospital provided accommodation and a kosher food cabinet. Rebecca and Aaron have started...

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You said that the hospital was very good with your religious requirements or observances. Did you ask them, or did they just act or …?
 
Rebecca' The first time they just acted.
 
Aaron' Well I knew that I needed, I knew, I mean it was a Friday afternoon and I didn’t know what, I mean there was enough worry going on in any case, and I didn’t know where I was going to be able to sleep or anything. So as soon as we got to the ward I said, “What, what is there?” Because as Rebecca said, it was the date, you know, it was suddenly, just those two days when it was all so last minute anyway, we didn’t do anything in advance. And we didn’t know if the timescales and things were going to happen. She was transferred after four hours, but it could have been a day or, or you know, anything. So yes, I said like, “Where do I go to find out about accommodation?” And they do, at [hospital name] they actually have a couple of rooms that are specifically sort of set aside rather than, not just for Jewish people, but, you know, the facilities are there.
 
Rebecca' But they have …
 
Aaron' And one of those happened to be available, so they gave me the key to that. And that was, which was great. That was just a massive weight of my mind for those couple of days I didn’t think… you know, I had this, and it was also good because it was in another building, sort of across the road, and I suppose from a personal point of view it was quite nice just to have that space between me and the ward and it was somewhere private I could go on my own as well.
 
Rebecca' But they were… most of the rooms, most of the parent rooms in [hospital name] involve electronic keys or electronic doors or all sorts of things that we can’t do on the Sabbath, but these particular ones are accessed without an electric door. They are accessed to using a key and there’s no, there’s no electronic that we have to go through to get to that room, and that’s one of the things. But there’s also a, what they call the Shabbat room at [hospital name], which is basically a cupboard.
 
Aaron' Which is run by a charity isn’t it?
 
Rebecca' oh yes.
 
Aaron' The hospital have provided the space and it is just a small cupboard, but there are, you know, and some food and some other sort of things inside it that are useful for us, a hot plate for heating some food and things like that.
 
Rebecca' And a kettle.
 
Aaron' I mean that’s organised by a Jewish charity. But that’s good, you know, it’s great. We didn’t know that was there at all did we? And they told me about that, that first Friday when I was there and gave me the keys to that. But I didn’t use it that first weekend because… but subsequently we’ve used it. And the other thing is, they always provide, the hospital will always provide accommodation for one parent, but not normally for two. But when she’s been there over the weekends, I mean there have been sort of two weekend admissions haven’t there for the IV’s? It’s not really convenient for us to be, well I mean if we had to we would stay, one of us would stay at home, and maybe walk in on the Saturday or something.
 
Rebecca' Or use a hotel but, well it’s expensive in central London.
 
Aaron' Yes, they have provided us with a room as well.
 
So there is a Shabat room. And can you get kosher food in the hospital? Have they got thi
 

Health is important in Judaism. The Rabbis Rebecca and Aaron consulted have been very helpful in...

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Rebecca' I don’t, I mean I think cystic fibrosis is possibly unusual, in that there’s very little that’s specifically Jewish related. There’s just no reason for it to affect you religiously, because if you’re that way inclined they’re always ways round it. Judaism, has never been about restriction, it’s about positives. Health is really important, and if that’s the best way to treat it, then that’s the best way to treat it. And if that’s not quite in line with what you would normally do on the Sabbath for example then the Rabbi will find some way of finding a way of doing it, if that’s what you need to do to keep their health, especially with children. Although we’ve had amusing responses.
 
When you ask advice do you actually go and physically ask him or do you phone him or..?
 
Rebecca' When I was pregnant I emailed [laughs]. You do email these days. It depends on the question and the circumstance.
 
Aaron' Hm.
 
Rebecca' Sometimes we’ll phone, sometimes we’ll go in person. 
 
So does he have office hours? I mean are there particular times when you can contact him? 
 
Aaron' Well yes, and no I suppose, in an emergency, you can get him or whatever and just ask him the question and …. And phone him at a reasonable hour, [laughs].
 
Rebecca' I reckon….I’m sure there’s a website ‘Ask the Rabbi’.
 
Aaron' Probably. 
 
Rebecca' But I mean we’ve got several Rabbis locally.
 
You can ask Rabbi, you don’t need to ask your Rabbi?
 
Rebecca' You can ask who you want. Only, I learnt quite, when I was at university you can ask more than one Rabbi but you ought to tell the second or subsequent Rabbi that you’ve already asked the first one.
 
Aaron' [laughs]
 
Get a second opinion.
 
Rebecca' You can get a second opinion. The, the rule actually is that you can ask the question again. You can ask it in a different way for example, as long as you tell the second Rabbi that you have already asked the question. You shouldn’t put them in the situation where they’re disagreeing. If they, you know, and they may wish to discuss it with those Rabbis what the question was. But, it’s like any lawyer I think, you have to kind of think of it in those terms. You know, kind of ask a lawyer a question it is a matter of opinion. And if the first Rabbi isn’t in line with what you think is right, then it might be that you need to ask somebody else.
 
 

Rebecca and Aaron think the standard of care they received for their daughter with CF is...

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Rebecca' But the [hospital name] team were brilliant, absolutely brilliant really, and really helpful and they gave us their phone numbers even before she was born.
 
We’ve also got a nurse, so that’s kind of part of it, is that we’ve got such good medical care, you know, kind of my niece was born a year after her, and the difference between the treatment that we had, and the treatment that she has is just ridiculous. I mean we’ve got a, a registrar we can call on 24 hours a day, 7 days a week if we’re worried which we’ve done on a couple of occasions and we’ve got a community nurse at [hospital name] and a community nurse at [hospital name] and a community physio, so any problems, I mean she’s barely seen the GP, because we’ve never needed to, you know, everything’s been kind of oh well she’s got a bit of a cold, we’ll phone the CF ward.
 
I mean even down to toilet training which we were struggling with, she’s got a psychologist who helped us out. Whereas you don’t get that with a normal, a normal baby and it’s, they make it as easy as they can make it, and in a lot of ways it was easier that she was well, because we had such a huge back up of support. But we knew she was getting better when the nurse from the [hospital] came when she was probably about three months old, having been very tiny and quite scarily thin, she came and said, “Oh she’s chunky,” [laughs].
 
Aaron' We do say with the care that we’ve had that we sort of fell on our feet in certain ways, the way that it happened that we ended up being seen at [hospital name] and we are one of very few families that get, that she actually get seen there, or has been admitted there, isn’t it, for the IV’s and things like that. Most of them would go to their local hospital, but we, we’ve sort of taken up the option of going straight there and we sort of feel it’s probably the best place to be. So we’re quite lucky with that.
 
Rebecca' Well it’s partly because, well partly because we live in London, and partly because are shared care is with [hospital name], and they are both very excellent hospitals so there’s no kind of choice really. I mean whoever’s got a bed. But yes, they don’t to take, they don’t tend to go to [hospital name] for their IV’s until they’re much older, they tend to go to their shared care hospitals.
 

So …. I think the nurses quite like her actually [laughs] because the CF kids are, especially her, they are actually quite well, you know, so it’s not like they’re lying in bed being quite ill. They’re often, I mean, yes, there are some who are obviously quite ill, but often they’re active and they’re out and about and they, you know, are running round the ward like a lunatic.  

 

The Cystic Fibrosis Forum has been a useful resource, but most people only use it when they...

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So [hospital name] advised you not to read too much on the internet. What did you find your information?
 
Rebecca' [Hospital name].
 
Aaron' Most from asking things or leaflets, there were all the leaflets they gave us all over the ward like that they gave us and also probably the CF Trust I suspect.
 
Rebecca' Yes.
 
Aaron' I mean from a reliable source if you like...
 
Rebecca' We did post on the, one the CF Trust Forum. We do still post on the CF Trust Forum for parents and carers, but when we first had her, we were advised that yes, get the support, its useful to have that back up. But remember is can be a bit of a distorted view. Quite a few people, including us, only post questions when they’ve got a problem, so you don’t really hear so much, actually my child is doing really well and she’s fine, kind of thing.
 
Aaron' You don’t hear the good news in places like that.
 

Rebecca' You don’t hear the good news. You hear the bad news. And you know, as she’s got older you notice that people who post on the forum are either those with unfortunately very ill children, or those with new diagnosis. And they post for the first year and then they disappear. [laughs] And I mean that went for us just as much as it goes for everybody else. So you do tend to only go and seek information when G-d forbid they are not well. 

 

Rebecca and Aaron were not offered genetic counselling when they found out they were CF carriers...

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Rebecca and Aaron were not offered genetic counselling when they found out they were CF carriers...

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Have they given you counselling about that?
 
Rebecca' Well normally you get counselled when you find out that you’re carriers, but because we were already pregnant at the time we never got the counselling. But we can have, and we will get, go to the genetic counsellors at, its at Guy’s to find out what the options are. Although I think we know, unless there’s some miraculous new cure.
 
But is it definite that the child would definitely have CF?
 
Aaron' No, its only one in four chance.
 
Rebecca' No it’s a 25% chance that the child has CF.
 
Aaron' They get the gene from, you know, there’s a chance of getting the gene from both of us virtually. They have to get it from both of us. So there’s a chance they wouldn’t get it at all. Then there’s a chance they’d get it from just one of us, so it’s a one in four chance they get it from both of us. And we worked out the odds originally. The chance of her having CF was one in four, and in actually fact, but for her to be born, for her to born to us who had no previous idea and I mean the meconium ileus as well, which again is only a one in …
 
Rebecca' 20% is one in five.
 
Aaron' One if five chance of a CF child having meconium. So combining everything together it was about one in twelve and a half thousand or something chance….
 
Rebecca' Its only one in ten now I think.
 
Aaron' I thought it was twelve and a half because of the five...
 
Rebecca' No.
 
Aaron' Well it was a lot, of a child being born with CF and meconium ileus to parents who had no previous knowledge, which is what we decided on, one every four years or something, even at the hospital the size of the [hospital name], there was only one occurrence every four years. So …
 
Rebecca' Yes, it was quite…
 
Aaron' We must have been special [everyone laughs].
 
Rebecca' But it just makes us feel like its just statistics [laughs]. So you just don’t know, you can’t risk, you know, you can’t work your life on statistics. I think we knew that already.
 
Aaron' Well it was because of us meeting wasn’t it?
 
Rebecca' Yes.
 
Aaron' There are one in 25 people that are carriers.
 
Rebecca' Ah no, that’s where it got more complicated, because it’s one in nineteen Ashkenazi Jews.
 
Aaron' Hm.
 
Rebecca' And then you got confusing, because you’re only half.
 
Aaron' Yes, because my dad converted so I’ve got ...
 
Oh that’s interesting.
 
Rebecca' So our statistics went a bit screwy [laughs].
 
Aaron' So yes, working from… the base if you like of use, happening to meet and both being carriers.
 
Rebecca' Yes. It was horribly complicated. It’s what you do, we’re sad like that. [laughs] It’s how we deal with things isn’t it? Thinking…
 
Aaron' And down. I suppose, I don’t suppose know whether it’s worth noting, she has actually had very mild symptoms really. You know when she was born we didn’t know
 

When Aaron and Rebecca both tested positively for the cystic fibrosis gene they felt very...

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We were told there was a bowel blockage by the Foetal Medicine unit and we were referred to a surgeon. The hospital were really on the ball and referred us for testing for Cystic Fibrosis. 
 
So they gave me a blood test and found that I was a carrier so then they gave my husband a blood test and he was a carrier. About 20% of CF babies are born with something called meconium ileus which is a blockage of the bowel, where the meconium becomes very sticky and gets stuck in the bowel. So when they’d tested for CF and found we were both carriers, they assumed that was what was causing the bowel blockage. We didn’t really know until she was born. There was a possibility that she would clear it herself, but we obviously wouldn’t know that until she came out.
 
So her birth was a bit of a military operation because she was breach. We always figured that she learnt gravity early but in hindsight that was the best thing because we saw a … well we never actually saw him, actually but we were referred to a foetal medicine specialist at the hospital who then referred us to [hospital name]. And as soon as they had identified that we were carriers they referred us to the CF unit at [hospital name] and we went there, and spoke to them. It must have been about 30, 32 weeks and they really reassured us. They told us all about cystic fibrosis and what we would be dealing with and all the things that we would have to do. And it was actually quite a relief to talk to them rather than waiting until she was born and seeing what happened.
 
 

Aaron and Rebecca found it helpful to talk to other parents via the Cystic Fibrosis Trust forum....

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Aaron and Rebecca found it helpful to talk to other parents via the Cystic Fibrosis Trust forum....

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Rebecca' Only once. [Laughs] I did the, they, well this is all through the CF Trust Forum. There was I don’t suppose you could call her a girl any more. [laughs] There’s a lady called Emily who was very ill. She was 20 and was waiting for a double lung transplant. She had already had two or three lung collapses. Was, you know, the kind of person you just don’t want to hear about. But she was just, she’s just such an amazing character, she really gave everybody a lot of inspiration. And she planned to have a group of, of what she’d referred to as ‘Emily’s Angels’ do the women’s 5k run at Hyde Park which is usually September time. I mean this was what was she? She was, was she even a year? Oh she must have been over a year.
 
Aaron' Yes, well I mean about fifteen months.
 
Rebecca' Yes, about fifteen months, so just over a year and we were still in that kind of yes, we were going to raise as much money as we can and we’ll tell the world and, and kind of then the realisation that actually we didn’t want to tell the world [laughs] came in. So that, and then we met up with quite a few, well quite a few of the mothers, like kind of more put faces to names more than necessarily communicating in a different way, you know, we communicated through the Forum. And that kind of worked.
 
But other than that we don’t tend to meet up with people, because the kids can’t up meet up because they’re a cross infection risks. So it’s actually quite hard. You don’t tend to, it’s easier to have a long distance because you’re not worried about meeting them in the street.
 
I think there was, there was another family near here, but they’ve moved away. So… But yes, [hospital name], hilariously if you live round here and you are diagnosed through a different route, you’d actually go to [hospital name], not [hospital name]. So anyone round here who has CF is diagnosed, would be going to [hospital name], so we wouldn’t know anyway.
So…
 

Rebecca' Which is obviously much more obvious and much more serious in a lot of ways. It’s very complicated. And she, you know, we kind of talk together, because we’re both in a situation where unfortunately our children are not a hundred per cent, but you know, kind of we talk about things like the school, her daughter goes to the same school as [daughter’s name] does, so we talk about how the school cope with their conditions and what provision the school’s making for them. And she’s been very helpful and very supportive and, but equally it’s gone both ways. You know, she’s asked me questions and I’ve asked her questions and so that’s been very good.  

 

Aaron and Rebecca reflect on how they had no idea that the CF gene was in their families.

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Aaron and Rebecca reflect on how they had no idea that the CF gene was in their families.

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Because while we are both carriers we had no knowledge of it previously. And we have no knowledge of any other family members that had had it. I mean obviously if you go back to a couple of generations they wouldn’t have known and on both sides there were child fatalities, within, you know, grandparent level or great grandparent level. So, but, you know, you are talking, you know 1800, 1900 years ago and it was more common anyway so you know there were lots of things probably that weren’t diagnosed. So who knows whether one of those, whether one of those children was, you know, did suffer from CF. But you wouldn’t know now, there’s no way of finding of out. Yes, so we had a lot to kind of catch up on, you know. 

 

Aaron and Rebecca's daughter has a daily nebuliser and medication.

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Aaron and Rebecca's daughter has a daily nebuliser and medication.

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What would you say about her routine since she’s used to since she’s been born. Can you describe what her routine is?

 
It depends on the day of the week. Well currently each day she has a nebuliser, which is only a few minutes, it’s the, it’s a, oh it’s a, a new drug basically that she, because its nebulised in straight into the lungs, but its specifically designed for cystic fibrosis patients, because they have trouble with mucus in the lungs. And she has particular, or they suspect she has particular problems with very sticky mucus. And this stuff kind of binds to it and makes it looser and allows it her to cough it up. She also has physiotherapy which takes about twenty minutes, which we usually do before dinner. And she has a prophylactic dose of antibiotic twice a day.