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  1. #1
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    Default Possible cleft lip - Positive stories please

    Hi everyone. So I had my 20 week scan yesterday, and today I got the dreaded voicemail from my GP... "Can you call me back urgently in regards to your ultrasound results". When I called her back she said there was a possible cleft lip and she'd referred me to the maternal fetal medicine unit in Sydney for another ultrasound with a specialist.

    I'm freaking out that my baby will be deformed, will struggle to feed and will need surgery in the first few months of its life.

    Google is full of worst case scenarios. I don't want more of those. But if anyone has any positive stories I'd love to hear them. I need something to hold onto until my appointment on Thursday.
    Thanks.

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    Default positive stories

    A lovely friend had one and this was 30 years ago.

    I didnt really notice it it was only mild and her parents operated on it when she was 2 or 3. You cant tell at all...and medicine is much more advanced now so they can do even more now.

    All the best.

    Butterfly x

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    Shellosaurus  (08-09-2017)

  4. #3
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    I don't know anyone personally but I do know Annie and Jason from MKR (not sure if you watched it) have a little boy who was born with a cleft lip who has had it fixed and is now fine. You could maybe look them up

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    Shellosaurus  (08-09-2017)

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    Default Possible cleft lip - Positive stories please

    My biggest advice from my experience of bad news while pregnant is really try not to worry until you speak to the specialist, and definitely don't google! I know it's hard but the fetal medicine specialist will really be able to reassure you with this. How far off is your appointment? If your baby does have it I'm fairly certain it's a straight forward procedure to correct it done quite early.
    Last edited by HollyGolightly81; 08-09-2017 at 20:40.

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  8. #5
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    Quote Originally Posted by HollyGolightly81 View Post
    My biggest advice from my experience of bad news while pregnant is really try not to worry until you speak to the specialist, and definitely don't google! I know it's hard but the fetal medicine specialist will really be able to reassure you with this. How far off is your appointment? If your baby does have it I'm fairly certain it's a straight forward procedure to correct it done quite early.
    It's so hard not to google! But you're right, it's only stressing me out more. I keep trying to compare my US pics with confirmed cleft lip ones and normal lip ones, and honestly it's just not clear either way. I came across a comment about "mourning the perfect baby you will never have" and I lost it.

    My appointment is this Thursday so not too long a wait, but long enough to give me plenty of time to freak out and think the worst. Must stay away from google!

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    HollyGolightly81  (08-09-2017)

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    Quote Originally Posted by Shellosaurus View Post
    It's so hard not to google! But you're right, it's only stressing me out more. I keep trying to compare my US pics with confirmed cleft lip ones and normal lip ones, and honestly it's just not clear either way. I came across a comment about "mourning the perfect baby you will never have" and I lost it.

    My appointment is this Thursday so not too long a wait, but long enough to give me plenty of time to freak out and think the worst. Must stay away from google!
    I know it's super hard not to Google, but just don't. in my experience, nobody can answer any of your questions better than the specific specialist (so GP or obstetrician may not give accurate info). Some thoughts to keep you going until Thursday:

    1) a cleft lip does not mean there is anything else physically or developmentally wrong with your baby.

    2) it doesn't necessarily mean your baby will have trouble feeding.

    3) it can be fixed around 10-12 weeks old.

    4) it doesn't mean you did anything wrong. Sometimes babies are just genetically predisposed to them.

    5) it does not mean your baby won't be perfect. If your baby has one it's just a hiccup in their many years of life. It will get fixed and you will move on and continue to watch your baby grow.

    Good luck staying off google and I hope you can distract yourself this week!

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  12. #7
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    I went to uni with a bloke who had a cleft lip and palate. All had been repaired of course. You could see a small white scar if you looked hard.
    Very lovely person, he was. Compassionate, kind, smart.

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  14. #8
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    My second child was born with a cleft lip and palate. He is 10 months old now. I also found out at my 20 week scan and was referred to maternal fetal medicine. I understand what you are going through. It was hard at first and I think I cried for a week when I found out. But honestly once he was here I was wondering what I was so worried about!

    He had his lip repaired at 3 months old and had his palate repaired at 7 months old. Our surgeon has done an amazing job!

    In regards to feeding, he wasn't able to be breastfed because of his palate and he also couldn't use a normal bottle. He just couldnt suck with a whole in his mouth! We used a squeeze bottle instead and I fed him EBM.

    My advice would be to join one of the cleftpals support groups. There is a NSW, VIC and QLD Cleftpals. All have Facebook pages and websites. You will be able to get a lot of support. I'm also happy to answer any questions that you might have!

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    HollyGolightly81  (10-09-2017),Shellosaurus  (10-09-2017)

  16. #9
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    Thankyou everyone. You've all been so helpful.
    Janey2012 is it ok if I PM you?

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    Janey2012  (10-09-2017)

  18. #10
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    Yep PM away

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    Shellosaurus  (11-09-2017)


 

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