Hi everyone,

Just wondering if anyone could advise me what my chances of having a child with a cleft lip/palate is. I have a bi-lateral cleft lip and palate with no family history of it. My partner has no family history either.

Any help would be very much apreciated!

Sarah

Hi Lisa

Thank you for posting. I have to get gentic counselling anyway as i have a family history of haemophilia. So i’m sure i could combine them.

I’m just wondering if you knew what the percentages were cos i know if someone has a child with a cleft lip/palate its a one in thirty chance that a sibling would be born with a cleft lip/palate too.

I’m really just wondering what the chances of me having a child with a cleft lip/palate would be?

Also do ultrasounds pick up a foetus having a cleft lip/palate?

Sarah

Hi Sarah

Purely non scientific, but, I have a cleft lip, but non of my 3 kids have it, nor does my granddaughter. My dad did have one though.

Can I suggest you post on the www.faceforward.org.uk parents board? It’s a forum for parents of children with clefts. They would probably have some of the statistics to hand

Jen

Hi Sarah,

have just joined and read your message. I have a daughter now age 2 whose cleft lip and palate was picked up by ultrasound at 19 weeks. We have two other children age 3 and 5 who do not have this and we do not know of any other family member who had a cleft!

Dianne

I am chilled and for your information it doesn’t matter if my children do have a cleft lip or palate, i was only asking for some statisitcs thats all.

I have a bi lateral cleft lip and palate so i know about all the physical and emotional problems that someone with a cleft lip and palate can go through.

Your post has come across as implying that i wouldn’t care or love my child and that is very upsetting when all i was looking for was some information.

Hi Sarah,

I was born with cl/p in 1960 and I have no family history either. When in the early 80’s I was pregnant no mention of my cleft was ever mentioned, by anyone. I was too stupid to ask about it really, but I worried in secret, a lot!

Neither my son or daughter were affected.

I wish I had known more about it all back then, but I applaud anyone who want’s to find out more about the chances now, I have talked to both my children and discussed genetic counselling with them and we all feel that it would be a good idea to explore this option further when they are at the planning stage
 However I’ve made known that I do not want to be a granny till I’m in my 50’s.

 love lorraine

Hey Lorraine

My story is very similar to yours. I was born the same year as you, and had pregnancies in the 80’s too. I did ask but was told not to be ridiculous, of course there was no likelihood of my children inheriting! I was really worried though, and actually more so when my grand daughter was born last year. I had no need to worry though

Sarah

Of course you want to know what the stats are. I would too if I were thinking about having children now. Forewarned is forearmed as they say. I was like Lorraine, too ignorant of the facts when I had my babies. sometimes I think in a way we were better off!

I did see on the CLAPA home page that if a scan shows a baby to have cL&P you can have free 4D scans now, so you can be prepared for the extent of the problem.

Do continue to ask questions Sarah, it’s the only way to get the information you need. Do you have access to a genetic councellor? They would probably be the best source of accurate information.

Good luck with the babies. Whatever, they will be beautiful. The fact that you are asking questions makes you a great candidate for great mummy!

Very best wishes

Jen x

Hi Sarah,

our daughter’s CLP was detected on a detailed scan (you may need to request this as it is not a routine scan, as I believe it requires more expertise than the routine 20 week scan), it was a huge shock to us, as we knew very little about the condition and had no family history. The follow up after the diagnosis and referral to the cleft team was excellent. The cleft team were a great support to us and were happy to answer any questions we had. We were also referred to the Fetal medicine unit, which also helped hugely in helping us understand more about our baby and this condition.

We were told that now a cleft had occured in our family, our daughter and her siblings were deemed to have higher risk of having children born with a CLP but then again it may not reoccur! As a previous reply I agree “forewarned is forearmed as the say”

I hope this info is useful to you.

best wishes

Dianne

Hi Sarah,

I had similar concerns when I was expecting and it is difficult to find out information. Try looking at http://health.yahoo.com/ency/healthwise/ug1361 . Might be worth looking at the references. But it looks as though it would be about a 1in 17 chance or even less. I’m not sure if much research has gone into this so might be why there is not much information around.

Gaynor

important

take it from me—I took the crash course in this when my daughter was born. when it comes to passing it on, there are many variables. I can tell you this: you should get genetic counselling if you have any questions or are considering the odds. I found out the day after my daughter was born that I have a 50 percent chance of passing my cleft on - that’s fine but I wish I’d had some time to get used to that idea!!!

some clefts are associated with a syndrome (like mine) and these syndromes can be recessive (need mother and father to carry it) or dominant (just one parent to create a 50% odds of having it). to complicate matters further, sometimes a syndrome is present but the cleft doesn’t occur, though other differences will.

so - the only person who can answer you is a genetic counsellor. in my experience, family doctors really don’t know all that much about specifics when it comes to this stuff. good luck!

Hallo there
Does anyone know if there have been any academic papers publised on the incidence of cleft lip and palate in the children of parents one of whom is affected with no other family history of craniofacial defects?
I’m 23 and tho’ I love my boyfriend to distraction I’ve no immediate plans to start a family (so much so that I’m starting a PhD in chemistry next month), but I’d sort-of like to know what the stats are and the ones I’ve seen have been rather unsatisfactory… they only include whether a parent, or a sibling, or whatever, is affected but if one parent is affected but so are great aunt maud and cousin tony that’s bound to be a whole different kettle of fish to the odds if the only other case is an entirely isolated one (as far as can be determined, of course) because it seems more reasonable to guess that it’s primarily down to environmental rather than primarily down to genetic factors.

Not that I greatly care whether any child of mine has a cleft, any way up I’ll be better placed to help him or her deal with it, at least initially, than my parents were… when I (their first child) was born, they’d never heard of a cleft palate. But I am vaguely interested, and it’s something I’d like to have got my head round before I start seriously trying for a baby. Maybe then I’ll get genetic counselling, but it seems silly when I don’t actually care what the outcome is.

Hi there,

I had genetic counselling when I had my son, we didnt know that he had a unilateral cleft lip and palate until he was born and wanted to see what the implications were for further children as my husband and I do not have a history of clefts in our families, Josh is the second child, my elder child Emma doesnt have it nor does my younger daughter.  We were told by the genetisist that I had a 1/25% chance of having another baby like Josh, Emma (our older daughter has less than 1% in having a child like her, Josh has 1/25 of having a child like himself and our younger daughter has also less than 1% chance of having a child with cleft lip and palate.

We were also told that Josh was born with a cleft due to a combination of environmental reasons, i.e I had the flu at 9wks pregnant with him and also a combination of genes not going back to finish what they started thats how she put it to me.

Hope it helps

I have a bi lateral cleft , and have 4 children, who have not been born with a cleft lip.

yeah it is definitely picked up on an ultrasound because they’ll happily offer you an abortion..even quite late on into the pregnancy.
i’m 19 now, but when i’m older and me and my fiance decide to have children that scares me the most. if i was ever offered an abortion for a cleft baby i couldn’t control my actions.
its so disgusting that a baby with such a minor, superficial thing can be aborted.

My husband and I found out yesterday that our baby (due in nov) has a unilateral cleft lip - they can’t tell yet about palate. My husband has a bilateral cleft lip and palate, so we’d been for genetic counselling beforehand - not because it would affect our choice to have children at all of course, but just because we wanted to know. We were told the chance was 4%.

I think we’d convinced ourselves that it was only a small risk and that our baby would be one of the 96%, so it still came as a shock.

Now we’re just trying to get used to the idea. I can’t wait for November though - he’s going to be gorgeous

I have a cleft lip and palate and have 2 children, our eldest was not effected but our youngest has a bi lateral cleft lip and palate. We were not offered any genetic counselling and did not consider it. It was a bit of a shock when the scan showed us the cleft but the Doctor in charge of the scan was brilliant. Madeline was born june 07 and has had the lip and palate repaired. We have been told that both our girls will be offered genetic counselling when they are older.