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Antenatal tests

Cleft Baby

11 replies

Sosmum · 07/07/2012 10:58

Hi,

I'm 22 weeks pregnant with ds1 who has a complete cleft lip on his left side. The consultant is also unsure if he has a pallet. We have turned down any futher testing and will not find out if there are other problems till he is here.

I thought I was coping well untill a few days ago and now I feel very low. We haven't really told anyone yet but one friend I did tell asked if I would take him out as people would stare :(

Does anyone else have a cleft baby?

OP posts:

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Svrider · 07/07/2012 11:08

Hi
My ds was diagnosed with incomplete cleft lip on his left side at 20 week scan

You are "allowed" to feel devastated
Surely these things happen to someone else????
Take a week or so to absorb the news

I wept when I thought of my ds' wedding fotos with a scar on his face

When you have stopped realling from the news, be brave and look at the clapa website
Pay particular attention to the "after" operation fotos (yes I know you don't want to even contemplate the operation yet!)

My ds is great. He is now 3. I breast fed him with no problems (if that's what you want to do)
He is smart and handsome

(hugs)

Hth

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Svrider · 07/07/2012 11:16

Btw I only had positive comments when I took him out

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Tiago · 07/07/2012 11:16

Your friend is correct that some people will stare, but those that matter will soon just ignore the cleft and love him as much as you do.

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boohoohoo · 07/07/2012 11:18

Hi Sos, first thing my Cleft Palate Nurse Specialist said was "don't panic, its nothing that cannot be sorted", and it's true! If you haven't already, you should get your own nurse who will guide you through everything. Cleft palate surgery is now amazing, your baby's lip will be repaired within six weeks of birth and palate at about eight/nine months. You will have special bottles to feed your baby in the meantime and they can have your breast milk if you express.

Of course its a shock, I cried for a few days when I found out and totally blamed myself, of course it wasn't my fault, but that's natural. CLAPA have loads of information and there's another great forum called face forward. Quite A few mums on here have babys .

Take everything one step at a time, there a lots of us one here who can guide you through everything and hold your hand x, pm me if you want to ask anything else.

And, congratulations on your pregnancy xx

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boohoohoo · 07/07/2012 11:22

Sorry, to reply to your friend, of course you'll take him out because my love you'll be so proud of him xx

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manitz · 07/07/2012 11:39

my cousin is in his early thirties and was born with cleft lip and palate. his mum has found it hard to deal with. It must have been distressing because it was a shock at birth (no scans in those days), feeding was relatively difficult and ops were traumatic for her but I have alwasy thought the scar added a bit of kissiness to his lips and I think he's a bit gorgeous frankly (you can barely see the scar but it sort of gives him an elvis look). (I'm not interested but I can admire beauty when I see it - he's way younger than me!)

I think the worst thing is the ops as it's really tricky seeing your kids in pain or suffering but it's not detrimental to his/their health.

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shalo2 · 07/07/2012 12:50

Hiya my little man was born with an incomplete cleft lip although we didn't know if palate was affected until he was born. It wasn't. I was devastated when we found out as 20 weeks and I worried what people would think, taking him out but I needn't have worried everyone was lovely and to be honest he was even cuter with the cleft. I stopped worrying the minute he was handed to me and also had amazing support from the cleft nurse and local midwives. The repair op was at 5 months and we have never looked back. That was nearly two years ago and he is a happy and funny little boy.
When a little time passes and once born you will wonder what you worried about. At least that how's I feel. I have tried to have a subsequent baby but have had two losses for chromosomal problems it kind of puts a cleft into perspective. Good luck. And when you're ready check out the Clapa website. Xx

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Sosmum · 07/07/2012 19:13

Thank you so much to everyone for taking the time to read my message and post a reply.

It's so nice to hear a positive outcome. I have looked at the CLAPA website and the photo's are amazing. I think the thing that worries me is the op itself and knowing there is nothing we can do as his parents. We have seen our CLAPA nurse and she seems lovely, we are under the care of the East Grinstead team.

OP posts:

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CMOTDibbler · 07/07/2012 19:17

If you are under EG, then they are the best around, and totally lovely. The hospital looks a bit tatty on the outside, but their work is world class

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Madmum24 · 30/07/2012 16:41

I know i'm a bit late (just saw this now) but want to reassure you that it really isn't a big deal. I have three with a complete bilateral cleft lip and palate, and firs time around it was such a shock. I remember bursting into tears during the scan but feeling incredibly embarrased at the same time! To cut a long story short, the treatment is great and it is no more than in inconvenience.

My guess would be that if it is a complete cleft then most likely the palate is cleft too, so feeding wise I would recommend the Mead Johnson soft squeezy bottles. They are cheap and cheerful, the Haberman bottles freaked me out (and they still do, lol) so this is something you can discuss with the specialist nurse.

I remember it totally ruined the rest of my pregnancy as I read a lot and I was soooo worried and anxious about things. It was such a relief when she was born and fed really well etc, 99% of the things I was worried about didn't even happen! So my advice is try to forget about it, and if you are feeling low do some retail therapy!

All the best x