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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be shocked that I was told "I didn't think cleft lip and palate happened in the UK".

142 replies

Sleeker · 11/05/2011 20:36

By someone in the job of parenting & pregnancy journalism. Shock

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Sleeker · 11/05/2011 20:55

*undiscovered apprentice" - am going to pm you, if you don't mind. Have queries!

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CFAW · 11/05/2011 20:55

I am really sorry if it offends, But that did make me laugh! How do some people actually make it through the day. What an incredibly thick person.

UndiscoveredApprentice · 11/05/2011 20:56

no problem, ask away.

boohoohoo · 11/05/2011 20:56

I've had unbelievable rubbish said to me with regard to my son's cleft, "oo, he doesnt look as though he has an hare lip" - nice or "I didn't know you smoked?" WTF? Apparently that's a well known misconception, or my favourite "he's not ugly is he!"

My son is a gorgeous gorgeous little boy, cleft repairs have come on massively over the past six years, about 1 in 600 children are born with one. The human body programme last week was very moving and its amazing how a relatively simple operation can change a Childs life.

Op it's totally shocking that a journalist can be so ignorant!

exexpat · 11/05/2011 20:57

I know several children here and in other developed countries with repaired clefts, but the surgery is usually done so early and so skillfully now that you wouldn't notice. Also I think the folic acid in pregnancy message means that the incidence is reduced here? But yes, a journalist specialising in pregancy etc should know better....

Sleeker · 11/05/2011 21:00

Well the incidence is 1 in 700, and becoming more frequent I think I've read somewhere??
The folic acid thing is interesting - not sure there is a definite link. All sorts of things are bandied around - drinking, smoking, folic acid etc. Or just genetics.
And yes repairs are great nowadays, but I still think that in most cases you can see something.
I just thought it was bad that someone who should be in the know about all things baby, would not be so ill educated!

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Paschaelina · 11/05/2011 21:00

Brothers, Panzee.

DN1 now 10 was born with cleft lip and gum on one side, the gum went into his nose. He had the palate and lip repaired and the gum straightened at 4 months old. He is awaiting an operation in the school holidays to graft a piece of bone into the missing bit of his gum and realign the front teeth which have come through side-on.
His scar has always been quite prominent as he has the type of skin which over-compensates with scar tissue.
He has mild speech difficulties, but not that you'd notice after a few minutes.

DN2 now 5 was much simpler, just one side of the lip and a small hole in his palate which was repaired at 3 months old.
He is absolutely fine and will need no more corrective surgery.
You wouldn't notice his scar unless you looked really hard.

FamilyCircus · 11/05/2011 21:01

Boohoo, wtf is wrong with some people?

Paschaelina · 11/05/2011 21:03

that should have been sleeker I was replying to Blush

Sleeker · 11/05/2011 21:04

paschaelina was there any family history of it, if you don't mind me asking? Am trying to work out my own genetics! Thanks

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Careful · 11/05/2011 21:05

A bit of a daft thing to say but understandable on a level because cleft lips are repaired at 3-4 months in this country so you don't usually see unrepaired ones except on those Smiletrain adverts.

Cleft lip and palate repairs have come on a lot over the past few years so now they are difficult to spot. I can see DS's because I know what I'm looking for but his nursery key worker was very surprised when she saw a picture of DS as a newborn with his cleft, she'd been looking after him for several months without noticing.

At least it's just daft and not offensive. You'd be surprised how many people wanted to tell me when he was born that he had a hare lip. Eugh. One midwife took a look at my beautiful newborn and said 'hmm, it's not that bad, is it? Yeah, thanks for that.

Sleeker · 11/05/2011 21:06

familycircus I've had some corkers "did you cut your son's lip on purpose?" and "Oh what a cute......"

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TattyDevine · 11/05/2011 21:09

I saw an interesting documentary about it recently which explained how it happened and its such a complicated process where the two sides of the face meet up and join its a wonder any fetus does it as nature intended!

Utterly bizarre how much is going on in there when some of us don't even realise we are pregnant. Talk about multi-tasking!

boohoohoo · 11/05/2011 21:09

I know family circus, it's bloody frustrating.

No one really knows why a cleft occurs, however, it is not caused by smoking, drugs or any environmental factor. It's probably genetic although it's difficult to accertain. I took folic acid as per norm. My ds cleft palate was not picked up for three days because my mw had no idea about clefts (she freely admitted this, and has since had the policy changed in our area for home births).

bumpsoon · 11/05/2011 21:14

Yanbu , however i think because of the education relating to folic acid before and during pregnancy ,and the fact that cleft palates and hair lips are repaired very early in a childs life and repaired very well nowadays , it means unless you know someone who has had a child affected by this ,you may not be aware of the incidence .

bumpsoon · 11/05/2011 21:19

Boohoohoo , the taking of folic acid is known to reduce the incidence ,but not eradicate the incidence , it may be that without that folic acid the severity may be worse . We have a family history , so i am guessing like so many things it is probably due to some known and a hell of a lot of unkown factors .

Sleeker · 11/05/2011 21:20

bumpsoon I take your point on board.
I would like to make it known though that referring to a cleft lip as a "harelip" is quite offensive. Again, many people don't know this and think it's just an old fashioned term (which it certainly is), but it is actually very offensive to me as a mother of a cleft lip baby also because of the background of the word.

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Aimsmum · 11/05/2011 21:21

My friend's little boy was born with a cleft lip and palate but it was due to amniotic band, nothing to do with genetics at all, no family history of it.

Due to the amniotic band he also lost a finger and part of his arm.

boohoohoo · 11/05/2011 21:26

Was just about to post that sleeker, harelip is horrible and offensive. Not sure about folic acid, as I said earlier i took that before and during early pregnancy. The fact is at the moment we really don't know what causes a cleft, however we are really fortunate here now because of the advancement of surgery and amazing support with cleft services in hospitals and charities such as CLAPA.

boohoohoo · 11/05/2011 21:32

I know bumpsoon, I guess I feel I'm always having to defend myself because of peoples misconceptions! But yes, don't think anyone really knows why it happens.

bumpsoon · 11/05/2011 21:32

Flipping heck i am sorry , i should know better really , it was how it was referred to when my brother was born , nobody in my family were upset by the term , but i understand with the passing of time ,things do change ,so again i apologise .

lookingfoxy · 11/05/2011 21:49

I have a cleft lip that was repaired at 3 months and final revision to even it up at 15, im 35 now.
No-one in my entire life has EVER commented on it, not even at school, I know of 2 other people off the top of my head that had cleft lip/palatte as well.
I don't think its that uncommon, but repair jobs are pretty good, even back 30 odd years ago ime.

Sleeker · 11/05/2011 21:54

Wow, that's great lookingfoxy Smile I hope and pray my son's experience goes on to be like this. Unfortunately though, experiences of others dear to me have been the other extreme.

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frogs · 11/05/2011 22:04

I would have thought an unrepaired cleft lip and/or palate in a baby or child older than a few months must be vanishingly rare in the UK. I've certainly never encountered one, and I've worked in medical research in a related field.

I do sometimes semi-consciously spot repaired clefts in adults when out and about, and have to make myself not do a double-take to have a proper look at the detail of the repair. But even in older adults they are usually really very good indeed, so that you'd have to look twice to be sure of what it was, and techniques have been getting better over time as well.

Thinking about it, I don't think I have spotted even a repaired cleft in a child or baby recently, which means that either the folic acid advice has caused incidence to drop so much that there are very few even repaired clefts around, and/or the techniques have got so good that even someone with experience in the field wouldn't spot it on a casual walkpast.

If I won the lottery, Smiletrain would be right up there in the list of causes I'd want to donate to, because unrepaired clefts are so disabling (socially as much as practically) and disfiguring, and treatment is really very straightforward and completely life-changing.

NeverSayPie · 11/05/2011 22:05

Somebody didn't know something, so shoot them!

I would have thought you would be glad that it is both uncommon enough and easily so well repairable that people wouldn't know very much about it.

YABU.

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