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

[CuppaTeaJanice]

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?

My friend's DS was born with a cleft lip and palate as a result of amniotic band syndrome (i think that is the right term) he also lost a limb due to it.

She has been told that it is not something he could pass onto his children as it is something that happened in the womb, but there are some types of cleft that are genetic.

He is 15 months now and has 2 operations, but he will still need further ops, he has such a lovely smile now

When my mother was scanned back in 73 she was told I had a cleft palate and to abort - so I doubt it's unusual. I don't have either a cleft palate or a lip.

A friend recently found out at her 20 week scan that her child would be born with a cleft lip - but such is the amazing 4D technology now, the surgeons had already been able to take a look and decide what to do before he was even born!

Once she told me this I started looking around more closely and within a week noticed that one of my colleagues has one - I've worked with him for years and never noticed. That either makes me really bloody unobservant - or, it goes to show how great corrective surgery is these days.

Both DH and his brother have a cleft palate - DH's is just one sided and hardly noticeable post-operation (which he doesn't even remember), but his younger bro went through 15 ops and has always suffered a lot from respiratory and speech problems.

We assumed it was genetic and went for genetic counselling and were quoted a 6% chance of our kids getting it. We then had a high-def scan at 20 weeks each time, with the operator looking specifically at the mouth area - both times we had 100% assurance that it was all OK. Obviously the scan had nothing to do with possibly terminating, but more to do with being prepared before the birth and getting an op set up asap.

Only after the birth did we realise that DH's mum had been on very strong anti-psychotic medication during both those pregnancies (DH and BIL), and 45 years ago nobody even suspected a link, or cared for that matter. So now I think the hare lip was probably not genetic, which is a great relief for me to know that there's little chance of my DDs' kids getting it.

Differntname...how long ago were you told that your cleft could have been caused by your mother's fall? It's such a sad story.

I was under the impression that cleft is caused by a faulty genetic process...that in the course of the millions of chromosomal activity that goes on when the embryo is developing, occasionaly one goes slightly awry and results in a cleft. This was how my DS's consultant explained it to me when I was asking whether anything I had done could have caused DS's lack of a fibula. She said his condition, like cleft, was just the result of one of millions of processes not happening exactly correctly and was random and not known to be caused by or affected by (nor could be prevented by) any external actions.

I can't begin to imagine how this has affected you, or your Mum. The fact that it may have been her action, I mean.

Blu...this was approx 10yrs ago. The consultant I spoke to said that a 'disturbance' could have been responsible. And that the 'fall' may have been enough.

The reason I was rushed through for the first op is that she had trouble bonding with me & my father have to leave his job as she couldn't look at me, feed me or care for me. I had to be fed via a cup & it was too much for her. I don't think the op really 'fixed' it for her as we had an awful relationship & no longer talk.

She seemingly has no regrets about it at all. During the stay for my second op, I woke up in hospital alone. She had gone home to go to work. I was 9.

oh, dnft, that all sounds v hard, I'm so sorry.

I was born with a hare lip, I forget i've got it.
I was totally random as well, no-one anywhere in my family had it.
My father once told me a doctor had said that a possibility was simply the way I had been lying in the womb as it was all soft tissue, no bone issues. I do have a tendancy to hold my hands up to the exact area and wonder if the doctor had a point or whether is a reaction to it being operated on there.
Can't believe someone would terminate over this. Another girl at my school had it as well, though she had the cleft palate also.
I had operations at 3 months, 3 years and at 15. I was offered a further operation just to 'perfect' things, but I turned it down, just not that bothered about it.

differentnameforthis, what a terribly sad story. nobody should have to know that about their mother. I was very upset when pregnant with dc2 and read somewhere that that can affect the nervous system. he has autism and eczema and I have wondered if my state of mind was the cause. I hope you and your mum are ok now. if that doesn't sound too trite.

oh sorry. read the last post.

Blu & FA, thank you!

FA, it's OK. The 'estrangement' was caused by more than my lip issue. I guess she had a bad time too, she should have been able to able to abort me, but she wasn't able to for various reasons.

That's life. I have learn to move on.

I think that's a very grown-up perspective, dnft. I think there are many many women who were forced to be parents when they just didn't want to be a parent. Nothing about the individual child, just to do with the state of being a parent. My child has a missing fibula...I could never imagine anyone who wants a child to terminate because of a mechanical probelm like a cleft or fibula hemmimelia. But I do think that women who do not wish to be mothers should not be forced to go through with it.

But if you can live well having overcome both the cleft and the inability of your mother to be a parent - well all strength to you.

I spent years agonising as to whether I was the cause of DS's leg. There was a cruel internet rumour circulating for a while that if you froze plastic bottles of water to take to the beach, the PCBs in the plastic came out into the water and caused birth defects. I had spent every summer hol doing this, and wrung myself out with guilt.

Then it was de-bunked as spurious nonsense, and while I felt angry about the people who peddle such stuff and suck up 'bad science' (it was repeated in women's magazines and the Guardian!) it also made me wonder what was the ppint of me having spend so long feeling guilty and responsible - about something i didn't know was (said to be) harmful, before I even thought of being a parent!

Being a parent involves all sorts of responsibilities and random factors of luck, circumstance and fate. A child is born into your life as it is, and with the genetic and physical make-up that spins out of millions of processes that we can't control.

Anyway, dnft - I wish you the best of luck. Your mother should have been able to love you better - but as for the rest, who knows for sure?