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Mandy

Age at interview: 29
Brief Outline: Mandy is White British and has a son who was born with a cleft palate that was not diagnosed until he was 6 years old.
Background: Mandy works part-time as a self-employed beauty therapist. Mandy is White British and has a son 6 years of age.

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Mandy is White British and is a self-employed beauty therapist. Mandys’ son was diagnosed with a cleft lip and palate aged 6 years. His teacher who is also a friend of Mandy noticed that his speech was quite nasally and he had difficulty with the pronunciation of certain words. Mandys’ father also has speech that is quite nasally so she thought it was something that was running in the family, but as her son got older she became more concerned. 

Mandy decided to take her son to see her GP and he was then referred to see an ear nose and throat (ENT) specialist who discovered he had a cleft palate. This was a big shock for Mandy and she went to look up cleft palate on the internet. Mandy discovered that he should have been checked at birth by the medical team – it is very rare that a child with a cleft could go undiagnosed for such a long time. Getting a diagnosis immediately explained why Mandy had found it so difficult to feed her son as an infant. Mandy had really wanted to breastfeed her son but following his birth he could not latch on to the breast. The midwives and nurses were not able to advise Mandy as to why her son was finding it so difficult to feed. Mandy also felt very guilty that she was not doing something right and that somehow it was her fault. Mandy was treated for depression and the stress of the early years with her son impacted on her relationship with her sons’ father and subsequently their relationship ended. Looking back she feels ‘robbed’ of her time with her baby as it should have been a much better experience and a happier time.

Mandy’s son is now under the care of a cleft team as he is due to have a palate repair operation and will have to undergo a general anaesthetic. Her son seems to understand that he will be ‘put to sleep’ and is being very brave about it all. Once he has had the operation he will also have regular sessions with a speech therapist to improve his pronunciation. After what Mandy and her son have been through she does not trust professionals as much as she did but the cleft team are really good and a member of the team came and visited Mandy at her home. 

Although Mandys’ son is articulate, sociable and outgoing boy he is also showing behaviour that is consistent with aspects of the autistic spectrum and has also been referred to the Psychology team. Following the diagnosis Mandy has found the support and information available through CLAPA to be very helpful and has become active in raising funds for the charity and awareness of cleft issues in her locality.
 

Mandy’s son received a late diagnosis of cleft following concern from his teacher that he was having difficulty with his speech and sounding of words.

Mandy’s son received a late diagnosis of cleft following concern from his teacher that he was having difficulty with his speech and sounding of words.

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I was just wondering if you could tell me the story behind that, how that diagnosis was made, and how you first learnt about it?

Yeah well it first was brought to my attention by my friend, who is a teacher at the school that he goes to, just issues that she felt, by the way that he spoke, that he was quite nasally, and his pronunciation with words. So she had sort of... highlighted that, but I didn’t think too much about it because I thought, because myself I’m quite nasally at speaking and also my father, my son’s grandfather is quite nasally. So I thought it was just something that would probably be the same running in the family. But as he got that bit older and I had concerns just... like definitely with his pronunciation of words, and I, and I felt, because he was quite nasally and because he was a boy, that this would maybe affect maybe like other children, making fun of him, stuff like that..

OK yeah.

…because of his speech. And I felt like maybe later in life he, if I didn’t maybe look into it, he would maybe wonder, ask me why. So because at times, with my speech, I always felt a little, a little if I heard myself speaking and things I’d feel a bit like, “Oh that sounds strange.” So I decided that I would make an appointment with a doctor just to get it checked out, make sure there wasn’t anything kind of going on congestion-wise or that.

OK.

Because I’d known when I was younger I got my adenoids out, so I thought, “Oh it could be something as minor as that.” 

Hmm.

So I took him along to the... to our local doctor’s, who had a look in his mouth. They didn’t say anything to me, apart from, “Yeah he is quite nasally, we’ll refer him to the Ear Nose and Throat Department.” So I got a... an appointment back for that.

OK.

And I still thought it would be something just pretty simple. So we went along to the appointment, and the doctor looked in his mouth, had a look, was really quite quiet. Sent us off for a hearing test. His hearing was absolutely fine. And still, he brought us back into the room, and still at this point I thought, “Oh we’re here, we’re kind of wasting people’s time here.” I thought that’s probably what he was... not going to say, but that’s how I felt. And the doctor did say to me, looked at me and said, “Do you realise that your son has a cleft palate?” Which at that point I was really quite shocked.

Yeah I can imagine.

Because I didn’t... the only thing that I knew about was really cleft lips. I didn’t know really much about cleft palate. It was only because visually I had seen one, one boy around who had had a cleft lip, so... I was quite shocked because it was nothing visible that I had ever seen. So he said that he would have to be referred to a specialist at a different hospital and they would take it from there. And my first question to him was, well when he described it to me was, “Will he need an operation?” And he said yeah definitely he would need an operation. So we went from there and... I was quite shocked, but I didn’t really look into it.

Yeah.

And we got an appointment through at the hospital where the specialist cleft team are. And it wasn’t till a friend said to me one night, “Have you looked into cleft palate? Have you... have you done a wee bit of research?” and I thought, “Do you know, I haven’t even looked into it myself, that’s... quite bad.” So I went online, just typed in cleft palate, really just to see what maybe the operation would be like, what it would... if I could see a picture or anything of my son’s, what he has. And once I started, as soon as I started opening up sites and reading through it, it was, it just hit me, it was my son was text book cleft palate baby. And all the memories experiences that I’d had with him as a baby, all the struggle that I’d had with him, like milk coming down his nose, not being able to breastfeed, it just all started flooding back. And I had loads of information that I just, I couldn’t believe that that that was my son. So... obviously I was quite upset then, and quite angry.
 

Mandy found the ‘fighting spirit’ in herself and used it to raise awareness of cleft palate in her local area and to help other families.

Mandy found the ‘fighting spirit’ in herself and used it to raise awareness of cleft palate in her local area and to help other families.

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I know this has been a very difficult time for you, what would you say were the positive, are there any positive things which have come, that have come about through your experience with your son’s diagnosis?

Well from... the biggest positive is myself, looking back, how... because I used to feel guilty about everything, beat myself up about everything, everything, I just thought I was... just wasn’t good at being a mum. So the biggest positive is... actually... having faith in myself and knowing that I actually, that I really, I am a good mum, and I am a good person. And having that fighting spirit that I never had before, which I have now, for to... that I can go out there and... fight for what I want. And also... raising awareness, I feel like this is going to take me further out into the big, to the big world, raising awareness, maybe fundraising, which I’ve already done bits and bobs... which I love doing anyway. So just kind of furthering, meeting people, other parents as well who are in the same situation.

So you feel like you’ve got a lot of experience you can give back?

Yes aye, yeah definitely. And like setting up a team in the area, a support group that I can be there to, to listen to someone who’s maybe just starting out on that experience, on that, on that trip.

So you’re saying you felt that there’s not enough awareness within the health professions as well, but there isn’t?

Right yeah well

The support isn’t there?

Uhuh.

…in this, in your geographical location?

Hmm, hmm yes. And definitely, I feel like... they don’t really give you much information, like the health visitors, midwives. I didn’t... I feel like you’ve kind of got to go and seek that yourself. And some people maybe aren’t like me, who has that kind of fighting spirit, and can say, “Right, this is what I’m going to do, and I’m going to do it, and I’m going to make sure everyone,” so some people don’t have a lot of support from family or friends, and are quite isolated, and that could be really lonely and really hard. So, yeah, I feel like if I’ve got the time, and if I’ve got the attitude to do it, then that’s what I need to do, to help other people out there, and make professionals aware of this happening, and how it feels.
 

Mandy’s son had a late diagnosis of cleft palate. Not knowing the cause of her sons’ feeding and behaviour put a big strain on family relationships and she became depressed.

Mandy’s son had a late diagnosis of cleft palate. Not knowing the cause of her sons’ feeding and behaviour put a big strain on family relationships and she became depressed.

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OK and what impact did that have on you as a family as a whole?

I would say I thought that I had postnatal depression... which I didn’t. I remember getting the... one of the midwives, or the health visitor, they bring a bit of paper, and it’s a kind of tick list of how you’re feeling, and I remember her saying to me that I was borderline but nothing... to me, if you’re borderline, then you’re only one step to being depressed, so that to me is still a concern. But at the time nobody said, they said, “You’re borderline,” that’s it, that’s it, “You’re borderline,” and there was no kind of…

Because you were borderline, that meant you didn’t get…

Yes.

…any treatment…

Yes.

…or intervention?

Yes.

OK.

And my son was, he was, he wouldn’t sleep very good, he was up every three hours, so I was really tired, I was really down. My own relationship with his dad wasn’t good so, yeah, I was really, really, really... depressed at that time, and really upset and crying all the time, but still... I still loved my son, I still loved being a mum. But I just felt at that time that... if I’d known what I know now that... I would have had the support there that I should have had, that I wouldn’t have been, I wouldn’t have felt like that. I would have had, I would have been, I think I would have been a lot happier hmm, hmm. So it kind of, it did, it really, it really... I don’t know, I felt... 

What kind of support would you have liked at that point in time, what would you have found helpful at that point?

I don’t know. Like knowing what I know now or, or then, if I think about it then…

Before yeah.

…what would have been helpful? My partner’s support would have been helpful. Because... I was doing what I was doing it was, it was like, well, you know, when I look back it was like I was, I had an impossible task, but I didn’t know it was an impossible task. I only thought that that is just normal for children so... for babies, so to me that was the norm. But really it wasn’t the norm, because if I’d had the proper tools then I would have been able to cope better. But then the added pressure with my partner and our relationship, I feel like if I’d had the support, and if both, and if he had known as well, because he didn’t know, I mean if we’d both known then I think we would have been able to support each other a bit better…

Yeah sure.

and that would have helped cope a bit better with it.

So in your situation the impact was quite, it came at a cost, would you say?

Yes and I did go on antidepressants as well at that time.

You did, yeah OK.

Yes at that time I thought it was because of my relationship that was sending me that way. But when I look back now, I know that it was all the stress of my son and that as well, just everything together.

Yeah sure.

So yeah I did go on antidepressants. And from me going to the doctor myself and saying, “This is how I feel,” not from my assessment of being borderline did anybody say to me, “Do you think, do you feel like you should speak to a doctor?”

Yeah.

I did it because I just knew that I wasn’t myself anymore, that something had to change, so I went.
 

Mandy’s son did not receive a diagnosis of cleft palate until he was 6 years of age. Mandy feels that health professionals should listen to the concerns of mothers and to be more aware of cleft issues.

Mandy’s son did not receive a diagnosis of cleft palate until he was 6 years of age. Mandy feels that health professionals should listen to the concerns of mothers and to be more aware of cleft issues.

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I’ve... I was approached as well by one of the cleft team asking that when, because they go round and speak to midwives, if I would be... OK to go round and speak and tell them my, my part of the story. Which, yep, I definitely want to do because I feel... I feel like... that I was really, really let down by the professionals, and I feel like it’s a point I have to raise so that it doesn’t happen again. ...So... yeah so I’ll be looking to do that as well, speak to professionals about it and just raise awareness within them, especially for new, new midwives and things coming through.

Hmm so do you think that it’s common that midwives lack relevant information about cleft, do you know if that’s a common thing or is it?

Well it’s not common for them to… for all the professionals, it’s not common for my son’s age to be missed.

Yeah.

Usually they can detect cleft in scans, and also as soon as they’re born, babies, their mouth is checked before they leave the hospital. So that’s something that doesn’t... I know that, I think they told me it was one in 700 babies that were born with a cleft. So most, in fact all the people that I speak to, and all the information that there is available, is geared towards babies. None... which obviously means that it’s more unusual that children my son’s age don’t get recognised before that. But still, I still feel like, as first time mums, with concerns that you have, that they should be listened to a bit more because I feel like you know your baby better than anyone. And maybe just a bit more information about things like cleft.
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