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Original poster

Was anybody here (or anybody's DC) born with a cleft lip or palate?

36 replies

CuppaTeaJanice · 17/03/2010 16:08

I've just read that one in every 600 or 700 babies in this country is born with a cleft lip or palate. That's really common, yet in nearly 35 years of living, I don't think I've ever actually met anyone else with one, and I've only seen them very rarely.

Was anybody else here born with a cleft?

OP posts:
waitingforbedtime · 17/03/2010 16:15

I wasnt but my best friend was born with a cleft lip. You wouldnt know it though unless she told you and hers was quite a serious cleft lip from her baby photos. All you can see now (if you know where to look) is a tiny tiny little silvery line from her nose to her lip so you probably have met someone.

shalo2 · 17/03/2010 22:26

I am expecting a baby any day now with a cleft lip. Since our antenatall diagnosis we have met other couples with babies diagnosed antenatally. Once you are affected you hear about numerous and regular diagnosis through the specialist websites you are referred to. As the operation to correct is done at 4 months it's unlikely you would ever notice any cleft lips in children let alone adults.

thisisyesterday · 17/03/2010 22:28

i haven't. but i have a friend who had a cleft palate, and her little girl also had one

i also went to school with a girl who had a cleft lip

Lionstar · 17/03/2010 22:33

I know of 3 families with DCs with cleft palates, all of which have had fabulous repair jobs.

Original poster
CuppaTeaJanice · 18/03/2010 17:28

That's really interesting shalo2. When I had my scans I specifically asked them to look for clefts to see if it had been passed on to DS. They looked at the lip but said it was impossible to look at the palate. They couldn't see any clefts on the lip (because there weren't any) but said it was too small to be sure. And this was at the 26 and 32 week scans, so he wasn't tiny.

Do you mind me asking how they picked up your baby's cleft? Did you ask them to look? I got the impression it's not something they routinely check for.

Oh, and congratulations!!!

OP posts:
Hulababy · 18/03/2010 17:43

My brother was born with a hare lip and cleft palate. He had several operations through his baby/child hood and a couple of big ops as an adult. He is 35y and things have changed a lot in how quickly they can operate, etc.

zapostrophe · 18/03/2010 17:44

This reply has been deleted

Message withdrawn

thisisyesterday · 18/03/2010 19:13

hmm i am sure they can see them at scans because it is sometjhing that you can terminate for isn't it?

i know my friend knew about her little girls from the scans too

Portofino · 18/03/2010 19:19

My colleague at work's dd was diagnosed on a scan. He was very upset about it, bless him, but the surgery they can do these days is fantastic. They were given full support before and after birth. His dd is gorgeous, though obviously several lots of surgery were required.

Hulababy · 18/03/2010 19:28

Yes, it can be seen on scans.

Obviously in the times when my brother was born there were no scans.

Original poster
CuppaTeaJanice · 19/03/2010 10:40

thisisyesterday - why would anyone want to terminate just because of a cleft lip?

OP posts:
differentnameforthis · 19/03/2010 10:54

I had a unilateral cleft lip when I was born.

Coffeebeanz · 19/03/2010 10:58

my LO has a type of cleft palate although its not operable and nor was it spotted on a scan.

You might be surprised about how many people you have come across in RL who have had a cleft repaired. I worked with a man for many years and only just twigged he had a repair, and like wise, one of the surgeons in the cleft papate team we attend has a scar too !

CaptainPicardsPineapple · 19/03/2010 10:59

My DD's dad was born with a double hare lip and cleft palate. He had 16 operations throughout his life to try and correct it and TBH his face was a mess and it was still obvious. This was 40-50 years ago though and what they do now is incomparable with what they did all those years ago.

differentnameforthis · 19/03/2010 11:01

Where did the rest of my post go....?

I went on to say that 35yrs later it is unnoticeable. Lots of people who know me can't tell at all.

Mine was due to a self inflicted accident that mum had when she was carrying me, it was at the time when the two halves of the face fuse, and my 'fusing' was interrupted.

I had my first op at 1 month (v unheard of back then, but it got rushed through due to my mothers state of mind at the time. Then again when I was 9. The surgeon said that it cannot be improved on. While working for a private dentist I met a consultant who said he could build up the lip & take away the little ridge & give me a next to perfect smile. I declined, as it is who I am now.

I am (was as having no more) at risk of passing it on to my children, but less so because it isn't a genetic thing (sorry, can't think of the right word). If it was a natural developmental issue the chances of passing it on would be greater, or so i was told.

Blu · 19/03/2010 11:04

They specifically look for cleft palate at the 20 wk scan (at the place I was scanned, anyway - harris birthright at King's) because it is considered a 'soft marker' for some chromosomal conditions. Soft marker basically means unproven possible connection, and like us many parents have probably been frightened rigid by the discovery of a simple, easily repairable, condition.

There was a high profile case about an alleged termination for cleft palate, but who knows the real truth behind the reason? I can't imagine anyone who wanted a baby terminating for cleft palate!

downbutnotout · 19/03/2010 11:14

My dh has one. He has had several operations throughout his life, lots of speech therapy and his face is quite asymmetrical, but it just looks like he has been in a few fights rather than had a cleft. I think he quite likes looking a lot harder than he actually is (he's a pussycat!) He still suffers from hearing loss in one ear and has slightly indistinct speech (especially when he's had a few). His teeth are also a mess and unfortunately it would take a king's ransom to sort it all out, but he is generally not bothered by the cleft thing these days. He had a hard time growing up though because of his appearance, but I think repairs are a lot more effective these days (he is 44).

Yes, until quite recently a cleft palate was an acceptable reason to terminate a pregnancy which obviously makes dh very angry. I think (hope) this is no longer the case.

Original poster
CuppaTeaJanice · 19/03/2010 11:22

Is there any way of telling if it's a genetic or other cause? Mine is a unilateral cleft lip too, with one missing tooth. My palate is intact and I was lucky just to need one operation.

As there are no other family members with clefts I assumed it might have been caused by the huge amounts of liver and vitamin A rich foods that pregnant women were advised to consume in the 1970s, or the lack of folic acid (did they have folic acid supplements back then?). I wonder if it was more common back then, although 1 in 600-700 still seems a pretty high number to me.

I'm confused about the scan now - the sonographer acted like I was asking her to look for something very unusual when I asked her to check for clefts.

OP posts:
CaptainPicardsPineapple · 19/03/2010 11:35

I think it isn't genetic, IIRC, I did a bit of reading about it when pregnant because DD's dad had one, it's random and if either parent has one the baby is less likely to. Lightening doesn't strike in the same place twice sort of thing.

differentnameforthis · 19/03/2010 11:36

I can only answer you by my own personal experience, cuppa.

I am 1 of 4 children. My father is one of 3. My mother 1 of 9. My father later remarried after my mother & had 3 more children.

No where in our family, as far back as my parent's Great Grandparents had a cleft of any kind.

All my parents siblings married & have children, who now have children too (some of those have children). Nowhere is there a cleft in the families.

No one can find a cleft going back several generations. I was unique.

I have spoken to an expert in the field, who (admittedly is unable to say 100%) did say that he was as sure as he could be that my mothers accident caused mine. She threw herself down stairs (as well as at least 1 other, different attempt) in a bid to abort me, so it would/could have had a substantial effect on my development.

differentnameforthis · 19/03/2010 11:39

Capitan, sorry that isn't true...not form my research.

I was a 1 in 20 to pass onto my child. People with clefts reoccurring in the family have a greater chance.

Lightening does strike twice! And more. I met a family in my travels. The father had cleft lip & his 3 children all also had clefts, at least one was a cleft lip & palate.

CaptainPicardsPineapple · 19/03/2010 11:48

There was some conflicting info whilst I was pregnant(this is 8 years ago so may have some bearing) I read somewhere, can't remember where, that it would be less likely to affect my DD because of her dad but when I went for booking in and they asked about family illnesses/conditions etc and I mentioned his lip they noted it as being important. So I'm fully prepared to believe you on this one if you know more.

Coffeebeanz · 19/03/2010 12:52

My understanding is that my DS has a greater likelihood of passing a genetic defect onto his children but it might not happen ...

Differentname, that is such a sad story your mother has carried around with her, she must feel so sad, but, you know I'm not entirely convinced the accident would have definitively caused the cleft, after all its often a random genetic mutation that has caused it. Thats what we've been told.

There is no history of a cleft in our families, yet for whatever reason somnething 'happened' during the process to DS. Nothing we did or didnt do, folic acid or not... its just one of those random things ...

Original poster
CuppaTeaJanice · 19/03/2010 12:55

What an awful story differentname, I hope your mother made a recovery from her problems and you were able to have a reasonable mother/daughter relationship.

OP posts:
micku5 · 19/03/2010 13:05

My dd has Di George syndrome (22q11.2 deletion) and one of the more common anomolies of this syndrome is cleft palate. She has the cardiac defects and speech disorder side of things.

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