Mary W

Age at interview: 53

Brief Outline: Mary is a primary school teacher and she was born with a unilateral cleft lip and palate and her youngest daughter was born with a bilateral cleft lip and palate. Mary had her lip and palate repaired in her first year of life and has had additional treatment for cleft related issues as a teenager and as an older adult.

Background: Mary is a primary school teacher and has had 3 children who currently range from 14 to 32 years of age. Mary is White-British.

More about me...

Mary is a primary school teacher and she was born with a unilateral cleft lip and palate and her youngest daughter was born with a bilateral cleft lip and palate. 

Mary had her lip and palate repaired in her first year of life and has had additional treatment as a teenager and as an adult. As a teenager Mary was not consulted before surgical procedures were undertaken and her parents did not discuss the condition with her. 

As an adult Mary found it difficult to breathe when having routine dental treatment and this made her feel like she was drowning. Mary’s dentist referred her to adult cleft services and it was then discovered that Mary’s palate still had a hole in it and there were other issues that needed to be addressed. Consequently Mary has undergone surgery and her health and quality of life has improved. 

When Mary became pregnant with her youngest daughter (who is now 14) it was discovered that she had a cleft lip at the 12 week scan. When her daughter was born she was diagnosed with a bilateral cleft lip and palate and was not encouraged to try breastfeeding her new baby. Mary’s daughter had her cleft lip and palate repaired and receives ongoing treatment such as speech and language therapy. In contrast, to her own experience, Mary and her daughter have been active in consultations with health professionals from the cleft service and has received help from the cleft service psychologist.

Mary’s daughter has a positive outlook on life and has not let being born with a cleft palate hold her back in life and she enjoys acting and drama.

Mary W experienced breathing problems during routine visits to her dentist and she was then advised by her dentist that she could receive surgery on the bridge of her mouth and her nose.

Did you have any treatment as an adult at all?

Yeah I had some recently.

Oh have you? OK.

So I had I think it was about... two and a half years ago I was having some difficulties... with... going to the dentist because I couldn’t breathe properly, and so when they put the water in your mouth I always felt like I was drowning because I couldn’t breathe through my nose because what I found out was something had kind of collapsed on that side and it was preventing me from breathing. And I also found that my hole in my palate had never been repaired, so I got that [laughs] repaired two and a half years ago... and that was…

You thought it had been, but it hadn’t?

Yeah I thought, I assumed it had. They’d done something but they’d left... some holes there.

Right.

And I also had a muscle moved, which was in the wrong place they said. And there were various things going on that I didn’t realise.

So how long ago was this?

About two and a half years ago.

Two and a half or ten and a half?

Two and a half.

Two and a half, so pretty recently.

Yes.

OK and was that done in the NHS?

Yeah it was done at [Hospital name]... Yes and that was by chance I had been talking to my daughter’s dentist and he had suggested that I see someone there.

OK so it was a dentist with a fair bit of awareness about clefts?

Yeah it was at [Hospital name] yes.

OK yeah.

And I got referred and it was all... dealt with at the time. I had a problem with my bridge, which I’ve had since I was 18, and apparently it’s lasted really a long time because I’m now 53. And I had a problem with part of the bridge so they... I got referred to the [hospital name] two and a half years ago and they sorted that out for me, and then I had the operation on my nose as well all around the same time. And that was the only treatment I’ve had since I’ve been an adult.

So, as a teenager, how old were you when you last had treatment?

I think I was about 17/18.

OK so this was your first engagement…

Yeah.

…with services?

For me yes, yeah.

And how did that feel like going through that as an adult?

Well first of all I didn’t realise I could have any treatment, and no one had told me and I’d never ... since leaving the dental department at [hospital name] when I was about 18 I have never ever... spoken to anyone about any treatment I might need or…

Right.

You, you can’t... the ties were cut and I thought that was it. I thought that was the end of any treatment you could have. But... I was... there was a forum called ‘Face Forward’, which has now closed I believe.

And I found out that other adults were having treatment, so I realised that I could, and that was when I approached the dentist at [hospital name].

So you were quite proactive then?

Yeah, yeah definitely.

Once you had that signal from the dentist you kind of went out there and?

Yeah, once I realised I could and I didn’t have to suffer [laughs] which is because it was making me phobic of going to the dentist because I couldn’t breathe and I also felt that the dentist I had thought I was being a bit of a wuss and didn’t understand my condition properly to know that I really couldn’t breathe and was literally drowning during the treatment, you know, regular check-ups and ordinary stuff. 

Routine procedures, yeah.

Yeah, so once I found out, definitely I went down the path to get what I could... as an adult, yeah.

OK and perhaps you could tell me a little bit about how your life has been since that episode of treatment and what the outcome has been like in reality.

Yeah, yeah I mean I think the great thing is it was... completely discussed with me. And also the outcome that was, that was... to be achieved was realistic. And so I was told this might happen, this might happen, this might not happen, so I knew the pitfalls regarding infections and things like that, and I also knew that this is a possible outcome that may improve your breathing, which is the result, you know, the required result at the end of it. ...So it was interesting in terms of being part of the decision making process and knowing what was going to happen to me. 

Mary W encourages others to consult charities such as CLAPA and Changing Faces and not to let a cleft become a defining feature of your life.

So I think that’s really important. And as a parent... I would say... to find out as much as you can from the professionals, not necessarily from all the people on the internet, so like CLAPA, contact an organisation where they know what they’re talking about, or Changing Faces, they’re really good as well. And don’t be afraid to let your child... do what they want to do.

Don’t let it hold them back. It doesn’t... after the treatment is over and done with it doesn’t stop you living your life. You get a job, you have a relationship, you have children... and, you know, I don’t think it’s made that much difference to me. 

Yeah so I suppose the point you’re making is that it’s not a defining feature like of an individual?

No, it’s part of you but it isn’t you.

Yeah.

You are everything else plus that. ...And... it’s not going to hold you back. As long as you’re realistic and not going to go off and try to get a job as a beauty queen: but I might not have tried to do that without a cleft.

Yeah.

...So... you know, you can do anything you want to do: just do it. And your children can do anything they want to do: just encourage them to do it. And hold your head up high: that’s the most important thing. Because you can spend a lot of time hiding yourself away. Eventually people stop caring anyway and stop looking. ...Just, just go out there and enjoy life.