Emotional impact and support
Families who receive a diagnosis of cleft lip and/or palate should be contacted by a Clinical Nurse Specialist (CNS) within 24 hours of the diagnosis. The CNS is usually the first point of contact and provider of information throughout all of the care the child receives, including giving information about support services. However, the other health professionals who provide care for the child may also refer parents to a relevant professional or local support group.
Most of the families we spoke to found a good level of support amongst their own family and friends but they also acknowledged more specific support from health professionals working in the cleft service.
- Age at interview:
- Kerrey works in the import/export industry and is married and with one son aged 7 months. Kerrey is White British.
I have really good friends and close family and... it really helps, so yeah. I mean a lot of people don’t really realise that it’s not just the visual thing.
That there are a lot more things that come with it.
So you kind of had to explain that. But our family and friends were brilliant and really, really helped.
And did you find support outside your family and friends, any professionals at all that gave professional help?
The... CLAPA... team, they do tea parties, Christmas parties…
…where you can, while you’re pregnant, you can actually meet people that have had babies with cleft lip or palate.
So you can understand, you know, what, what happens next. You can... speak about how you felt when you found out, and you can realise that all the things that you’re feeling... are completely normal, and it’s just nice and reassuring to talk to these people. And these parties and these nurses were just a God send really.
OK yeah, so you found yourself a network of people there…
…that you could tap into and…
Hmm, hmm yeah I mean and they understand.
…found support, yeah OK.
Yeah because you kind of get a bit sick of people saying, “It’s going to be OK,” because they don’t really understand.
Yeah, you want to know what’s really going to happen?
What’s the reality of it like, yeah?
Yeah and I’ve made some good friends through it as well so…
- Matt is White British, married and works for a Christian charity. He has 2 daughters – his eldest is 2 years of age and his youngest is 9 months who was born with a cleft palate.
My wife’s found it very helpful on the likes of Facebook where there’s certain forums and groups set up, where you can get in contact with other parents, other mothers who are also struggling, in a sense, with... their children being, in a sense, different with having a cleft palate, and just some, some, some of the complications that can happen with that. And I know she’s certainly got in contact with another little boy who was having his operation on the same day, and she’s kept in contact with her through Facebook and, and stuff. And so it’s been sort of an eye-opener to us, to realise that actually through what we’ve gone through as parents, to really just encourage other parents who, who have got children in, in similar circumstances, just to, just to, yeah, to say, “Look, hey it’s, it’s not the end of the world your child’s got a cleft palate, but there’s tremendous support out there for you and just, just hang in there and, and just support one another, and know there’s other parents out there who have got kids that are going through the same stuff as you. So... get in contact with them through Facebook, through CLAPA and other people, and meet up with other people and, and talk about it.” And I think, to me as well, talking about it with people, even, even doing this interview now, has actually, sort of makes you process it.
- Age at interview:
- Natalie is White British and has a daughter of 19 years and two sons of 16 and 13 years.
Well I suppose, from my point of view, everybody deals with it differently, don’t they? And I decided that the best way for me to deal with it was to get involved with, with CLAPA branch, and CLAPA itself. Because I hadn’t had anyone to talk to, I trained as what they call a parent contact, they do this training.
Oh yeah, yeah.
And I did that quite some time ago now. And now only, I think, was it sort of, it just seemed the right time to do it.
And... yes I did it because I want to help parents and support them if they need it, but also for me it was a way to, I don’t know, just process the whole thing really. And the training was great. And I just remember it was the first time, I think, I’d sat down with other, well it was all mums, there wasn’t any dads there, mums and, you know, just completely opened up about my experiences. And... that was a good thing.
Yeah I remember there was a psychologist there, and she spoke to us and said, you know, “This is, this is a good thing you’re doing here, and for whatever reasons.” And she definitely put it into perspective, and I kind of thought, “Yeah that’s, that’s what it’s all about really, is, is trying to support people when they need it.” And not everybody needs... needs it. And, you know, and I know lots of people get their... get sort of strength from talking to people on-line, and that’s fine. Me personally, I’d rather talk face to face with someone.
But yeah, just kind of seek whatever... help is out there really, if you want it, just so that you can... open up about it. I think it’s, you know, that’s important. And it’s important for the children as well, you want them to... just accept, accept the, accept what’s happened.
And, you know, once you’ve accepted it you can hopefully, you know, in the way [name of child] I know he deals with when people do ask him why he’s, why he looks, you know, his nose is different, and he’s got, and he, you know, he just says, “Well I was born like it,” you know, and that’s because he’s accepted it and that’s what it is, fact.
And, you know, so yeah, I don’t know, just, just keep... keep an open mind, keep, keep talking about it with the kids and...
So just being open?
Yeah, yeah, yeah and take what, whatever, ever help is out there medically, you know. Because you don’t quite know what they, they might need in the future. Because you focus so much at the beginning on those ops.
- Age at interview:
- Rebecca and Russell are both White Caucasian, are married and work for their local authority. They have one daughter of 16 months who was born with a cleft palate.
Russell: Well I actually had to see a counsellor through work.
Oh OK yeah.
Russell: I got one set up because I was... because I was really struggling.
Oh OK yeah.
Russell: It was just so hard. But we never really got offered anything... you did through your GP.
Rebecca: I did through [name], the speech therapist as well.
OK more in a formal kind of way or did you see?
Rebecca: No just she said if we ever needed anything, you know, she could put us in contact.
OK so she helped to coordinate that?
Rebecca: Hmm, hmm oh she’s been fantastic. She’s been the biggest help,
Rebecca: hasn’t she?
Russell: Been amazing.
Rebecca: Yeah I mean I would... I don’t think we would have been... done as well if we hadn’t had her support at the very beginning as well.
Rebecca: Because she was just, she was always saying, “I’m just on the other end of the phone if you have any questions,” all that kind of thing. And I think she would come out once every couple of weeks.
Rebecca: For the first couple of months, and then it was like once a month, and then it just, it gradually got less and less, and then we’d just see her at appointments. So she’s been fantastic.
Russell: I seen her today.
Rebecca: Did you?
Russell: Yeah she waved at me on the bus.
OK so going back to your counselling, how easy was that for you to source, and did you know where to go?
Russell: Yeah we’re quite lucky at work, our manager, in quite a big office, we offer it as support to staff that need it. So I knew exactly where to go, quick phone call, and I think it was within a week it had all been set up, and that was just down the road actually.
OK that sounds…
Russell: Yeah it was really good and it really helped me.
And was the counsellor specialised in this kind of thing or was it more general?
Russell: No, just general.
Russell: And it was good, it really helped me, and it helped me open up to Rebecca as well when... because, I don’t know, I’d just kind of been brought up that, you know, solid wall, sort of thing.
You felt you had to be?
Put a brave face on and?
Russell: Because you..
Rebecca: That drove me mad.
Oh right yeah.
Russell: But it was hard because we were... we were struggling with [daughter’s name], and Rebecca, started fainting randomly as well. So that just... she was one minute walking down the hall and then she would just faint. So all that was going on and then... just...
Rebecca: It was a fun couple of months, wasn’t it [laughs]?
Russell: It was really hard. But now, it’s all worth it now. She just... I come home and I see her and she just comes running up to me and…
Rebecca: Oh yeah, best thing in the world.
- Age at interview:
- Mandy works part-time as a self-employed beauty therapist. Mandy is White British and has a son 6 years of age.
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…
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…
…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…
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.
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?”
I did it because I just knew that I wasn’t myself anymore, that something had to change, so I went.
- Age at interview:
- Michelle is White British, married and currently works part-time as a local authority administrator. She has two sons and the eldest was born with a cleft lip and palate.
I kind of had a bit of postnatal depression at that point, and I was having panic attacks and anxiety.
And I think that was because I’d just kind of pushed everything to the side and just kept pushing it and just kept pushing it, and we had a lot of things going on at the time within our family.
So there was delayed reaction perhaps?
Yeah I think so, yeah, I really do think so. But it was my way of coping, and then in the end my head said, “You can’t keep doing this,” so... and then it dealt with it the way that it wanted to really.
And did you get any professional help around that time?
Could you explain a bit about that?
I went on antidepressants to stop the panic attacks. And then... was still having the... the kind of the thoughts of impending doom that you get with panic attacks, so then I started seeing a counsellor. And after about five months of counselling, altogether it lasted for about... a year and three months I think.
And was this provided as part of the cleft service or was it something you did?
No, no, this was what I did through my GP.
So you sorted it yourself through your GP?
Because I understand, I understand some…
I mean I wouldn’t even know if we could.
…Because some teams have psychologists, and I just wondered if you had access to the psychology services?
No, no. Well maybe if we’d asked, maybe, but, like I say, we only met her.
But were they aware?
No they wouldn’t have been aware.
...But we only met her when I was pregnant, quite heavily pregnant, and then we didn’t see her again, which was the only issue I had with the hospital actually, on the basis that we had a couple of appointments that they’d sent us a letter through to, we went all the way to the hospital, because it’s not close, to get there for these appointments, and a couple of times we’d turn up and they’d say, “Oh no, you shouldn’t be here, you should be at a different hospital.”
Our local hospital, [laughs] which is just typical, because they do clinics at the, the local hospital as well. And I think one of those times was the time that we were supposed to be meeting the psychologist.
So ... that, I would say, was probably the only real negative from our experience from the hospital. But, yeah, I wouldn’t, I don’t think I would have even asked. Because it was so, so long after... any of the surgeries that we’d had, I don’t think I even would have thought to have gone to them really for any help.
Though maybe that might have been the way to go. But yeah, so it lasted about a year and three months altogether.
Which is quite a long time.
…quite a long time, yeah hmm.
Yeah, but I didn’t help myself in the fact I tried to... tell myself everything was OK, because I wasn’t having the panic attacks, I was telling myself that everything was OK, but actually I needed the counselling just to kind of... sort my head out [laughs].
- Age at interview:
- Jenny is a clinical psychologist and is married with a son aged 5 years and a daughter aged 3 years. Jenny is White British.
So... only in the last month or two joined the, the sort of parents’ forum on Facebook that CLAPA organised.
Yeah so could you say what influenced your decision to get involved, or not to be involved earlier on and to be involved now?
Well earlier on I’d had really good support from friends and, and my mum, and didn’t feel like I needed it. And in a way didn’t... I don’t know, I think we felt a bit of a reluctance to... to kind of to mix with people where the only thing we had in common was, was cleft.
It kind of felt a bit... artificial. It felt a bit forced. So we kind of didn’t, didn’t go down that road. And I think, yeah, because I had good... you know, good support around, didn’t really feel like I needed it. Where I feel like it’s more come into its own recently has been... I suppose also when Maisie was a baby I would have predicted that she wouldn’t have had problems with glue ear and she wouldn’t have had problems with speech, even though I knew those were possibilities. And we have had problems with glue ear, which... fingers crossed seem to have resolved.
And we’re having quite... significant problems with speech. So that’s kind of made the cleft be more of a thing than I thought it would be.
So as time has gone by I’ve thought actually I need to get a bit more involved in the cleft world.
And partly about getting information from people, but also on the forum I’ve... it’s been quite nice actually to share my experiences with people who have had new-borns, and to say, “This is what it was like for Maisie,” and it’s quite nice actually to be able to help people, even though I joined up wanting information.
Has that helped you as well personally…
…to deal with the emotional side of it?
Yeah because I think there’s, you know, part of me, it’s almost a bit like I’m saying it to... to myself three and a half years ago and kind of, you know, that bit of reassurance that even though I didn’t feel like I needed it or went looking for it, it still would have been nice to have. So there’s that, you know, empathy with, with parents who are kind of earlier in the ... the journey.
(Also see: Diagnosis of cleft and impact on pregnancy’ and ‘Cleft treatment pathway’).
Last reviewed June 2017.