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

[Sleeker]

By someone in the job of parenting & pregnancy journalism.

I didn't know that about anti epileptic drugs.

It's interesting because my epileptic auntie had a daughter with a cleft palate. She choked on a feed at 8 days old and died.

It's a serious condition which can cost lives, and I think it vey ignorant that a journalist for such a field doesn't know more about it.

@ Lol! You're Preggers!!

Features included:

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^How to choose bub's perfect headband"
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Shakirasma, I'm sorry that is awful, one of the problems are that cleft palates are not picked up quickly enough. My ds was three days old when it was found, and I've heard of babies going ten days before they are diagnosed, by which time they are starving. After trying for hours to breastfeed, our midwife suggested trying a bottle, my dh then spent three days buying new teats constantly cos we kept thinking there was a problem with them. I mean, if your mw doesn't think there's a problem with your baby you start looking for other things to explain why we couldn't get him to feed, dh ended up squeezing milk into him so luckily he wasn't starving. Like I said before our local community midwives have now changed their policy and check for a cleft palate as routine with homebirths.

may I ask an insensitive question?
a friend of mine is a suregon in germany and he repaires cleft palates and lips. he does them when baby is a few days old, before the mother even leaves the hospital (they are usually "kept in" for around 4 days).
why are they sometimes left so long, someone mentioned months?
seems cruel to me, especiall if it affects feeding.

Boohoohoo My DS was 6 WEEKS old before his cleft was spotted! He had already been given a soft sided bottle after 2 weeks of tube feeding because his suck wasn't strong enough, but it took a trip to an orthodontist who was cutting his tongue tie, to notice. She noticed immediately, and converstionally said to me, what are they doing about his cleft palate, and I was like "Cleft palate, what cleft palate?!?" And it's not as if is was a small cleft. It's filly through his soft palate and just nicks into his hard palate. I feel so guilty as I had noticed that he didn't have a dangly bit at the back of his mouth and that you could see a lot of the back of his throat, but jsut assumed he had a big mouth

Mouseymouse. DS's surgeon doesn't operate until 6 months as she said that the roof of the mouth has a lot of tiny muscle fibres that in a cleft palate are misplaced, and by six months they are just that little bit bigger so she can unpick them all and sew them together so that the repaired roof of the mouth moves properly and causes minimal speach problems later on. Also there is the general anaesthetic which is always a worry. DS was in "under" for 4 hours with his cleft repair.
I think they repair the lip at about 3 months. Babies with just a cleft lip can sometimes breastfeed. Babies with a cleft palate can't as there is no way to create the suction.

mousy
It's not insensitive . 19 years ago DS's cleft was found in a 32 week scan - we were very lucky - most people didn't find out until the baby was born at that stage. It gave us chance for find the surgeon who did most repairs, and was therefore best at it, rather than the kidney guy who did the odd cleft repair on the side. This was genuinely the case in our area at that time.
I looked into how soon the lip could be repaired, and the thinking was - and still is - in the UK, that the baby should be allowed to recover from the trauma of birth and gain some strength, before undergoing what is quite a serious operation. They also feel that the tissues will be better in some way, so that the resulting repair is likely to be more successful, once the baby is a few weeks old.
Likewise, the cleft in the palate was repaired at around 8 months, although there was a line of thinking that the scar tissue could inhibit the natural growth of the face, and cause the concave face that sometimes people with a cleft have, and it may be better from this point of view to leave it for longer. The balance to consider was that leaving it for longer could have a detrimental effect on feeding and speech.
Inface DS did have surgery last year to bring forward his top jaw - so who knows whether it's growth was impacted from the palate surgery, or whether it would have happened anyway.
Sorry - quite a lengthy response - and maybe out of date in parts. But a cleft repair is not a quick job, and does potentially affect many other parts of development.

Thank you for the answer, makes sense to me.
Probably just a cultural difference then.

Or maybe I didn't understand correctly and he is only doing some "patch up" so that the baby can feed better?

Additionally, i think surgeons feel that sometimes a better repair may be possible when they have more to work with (ie the baby is a bit bigger). My son had a cleft lip only and was a voracious breastfeeder, so his op was able to be put back to 6 months. The surgeons thought they'd be able to do a better-looking repair than if they'd gone ahead at 3 months.

This is exactly why I don't like charities, this is just symptomatic of some of the damage they do to people's perceptions of the world we live in.

Do you not mean "parenting magazines" rather than charities? Are you serious?

I would not be shocked, maybe bemused. Plenty of journalists end up writing about matters which they've had no specialist training for. Just because somebody is writing about parent+baby matters doesn't mean they know everything about it, far from it. Same for many sports or traffic reporters, they just try to get up to speed quickly but will have many gaps in knowledge.

Remember how Frank Gardner became the BBC "Security Correspondent"? I think it was 9/11, and he was the only reporter they could get hold of who had a lot of knowledge about the Middle East. He certainly wasn't a terrorism expert when he coined his own job title.

I am also thinking of Peter White during his trek in Africa, how amazed the locals were to meet a blind westerner; they couldn't believe it.

Can I add from a personal opinion bearing in mind that I have a hare lip and clefte palate. It is widely known in the Uk. You just have to look up Mount Vernon hospital in Northwood Middx to see that hundreds of operations have been done there. Hare lip and clefte palate are due to a chryonsome missing that is all. No drugs or heridatary factors involved I am afraid and I should know :)

It is very rare that someone will comment on my cleft - maybe once a year, and usually they assume I've cut my lip in a car accident (or fight ). The only people who, if they spot it, know immediately what it is are dentists, people involved in surgery etc. So I don't think it's something the general public necessarily knows much about. The Smile Train and other charity leaflets etc tend to feature lots of pictures of unrepaired clefts, with the post-surgery pictures on the inside of the leaflet. That is obviously intended to make a big visual impact to encourage people to donate, but if some people are then expecting to see unrepaired clefts in the uk then they are very unlikely to, so may assume they don't really happen here.

I very rarely see anybody with a repaired cleft even, the surgery has been very good for many decades and is getting better all the time. Cleft scars often easily blend in with the filtrum ridges, facial hair and wrinkles in older people.

I'd never heard of the link between the hare lip terminology and witchcraft/the devil. I presumed it was just an old term like pigeon chest etc. A bit old fashioned but not overly offensive like many other terms for disabilities and medical conditions.

Should add that I was told I didn't need extra folic acid during pregnancy. At my 20 week scan I asked them to specifically look for clefts and they said they would, but it wasn't routine and they could only check the lip, not the palate.

Also I thought clefts were one of those abnormalities that could be caused by too much vitamin A, so were more common when pregnant women were advised to eat loads of liver, and became less so when docs realised vit A was bad. They are also related to neural tube defects. I may be wrong though.

GibberingGinger my mum breastfed me for 9 months. My cleft only affected my lip and one missing tooth though.

Can I just add again that it is a chronosome that is all, it is nothing to do with vitamin deficiances etc. I should know I was born with both hare lip and clefte palate. I went through a stage in my life where I tried to blame everything from my mum not eating enough to my dad battering her when she was pregnant. I had a very good surgeon (27 ops), who sat me down and explained why it happens. Children that are born these days can have it totally repaired within 6 months of being born. When I was born in 64 it took longer. (must add I am stunningly gorgeous now lol). I also had two dc's and was fortunate that although I insisted on having a scan to check that they would not be born with clefte lip and palate I was also assured by a very good surgeon that it IS A CHRONOSOME PROBLEM NOT INHERITED OR LACK OF ANYTHING ELSE. believe me I am a blinkin expert......:)

IS A CHRONOSOME PROBLEM NOT INHERITED OR LACK OF ANYTHING ELSE

Please don't shout!

Actually, the causes aren't always known. So your statement is incorrect!

And if you were born with a cleft lip you would know that the term 'hare lip' is highly offensive!

i was born with a cleft lip and luckilly for me after the surgery at 3 months i just sort of grew into my nose and lip. had a lot of dental work too. when i started dating my partner he didnt even notice till i brought it up in convosation.
i do have to disagree with sunshine. i was born in 91 and before my partner and i started trying i had an apointment with my specialist and asked him the chances of my child having a cleft and he said my chances were 1 in 450 as the chances are raised slightly if its hereditary i heard this info from him at birmingham woman's hospital about 2 years ago

I assume sunshinelifeis good that your post is some sort of joke? CLP is not a chromosomal abnormality, and yes it can be genetic if you already have a cleft lip/palate in your family. And I doubt if you had one, you'd call it "harelip".

If you do not have a history in your family of CLP, then your chance of a CLP baby is 1 in 700.

If either of the parents have CLP then the chance of a baby with CLP is 1 in 25 (4%)

I saw a little 4mth old boy in Canterbury the other day with cleft lip, was weird because when I saw his face, I didn't actually notice his lip, he had the most hilarious facial expression going on - his eyes were wide open and his eyebrows up and he was laughing - most cutest thing he was. THEN I saw his lip and hoped his mum didn't think I was smiling at that - so I chatted to her, we didn't mention his lip - why would I?
But it did make my mum and I discuss it after - that we had never seen an unrepaired one - if it's not done 'til 4 ish months - where are all the babies younger than that? Or is it just much less common?
Anyway, he was lovely looking and his face was so expressive - no idea of my point, just that we decided for ourselves that it's very rare nowadays - so I am surprised it's 1 in 600 to 700!

SEEKER

Why are you so dismissive of what other's say...and since when did the term Hare Lip become offensive...just because YOU find it offensive it doesn't mean others do....if you are not banging on about one thing, then it's another!

Sunshine....glad that things have worked out for you. My cousin is also very beautiful...had her operation early on in her life and you really wouldn't know (by looking at her) that there had ever been a problem...in spite of some self imposed expert saying that you can usually tell Rolls Eyes!!!

sausagesandmarmelade

It isn't just sLeeker that has an issue with 'harelip'. It is probably anyone who is affected or knows someone who is affected.

In years gone by women & their babies were driven out of communities if the baby had a cleft lip because it was thought to mean that the mother fornicated with the devil.

But that's not offensive, no?

sausagesandmarmalade I wasn't sure if sunshinelifeisgood was serious or not. It absolutely is not a chromosomal problem, and therefore assumed that this might be someone just posting for a joke.
I'm not dismissive of other peoples points of view, or I try not to be, even if I don't agree.
And "harelip" is offensive, not just to me but to lots of other cleft parents I've spoken with, and people with a cleft lip/palate themselves.

QOD Cleft babies are just so cute, I loved it when my son gave me his wide gummy smile. I missed it so so much when he had his operation, and went through a period of wishing we hadn't gone through with it. I wonder whether the reason you don't see so many pre-op babies about is because the parents are worried about people's reaction in the street - most are positive, but sometimes you do get people being unkind. When you're preparing for an op on your baby, sometimes you don't have the strength to go outside and face the world!!