21 comments

1. Posted by Sam on 11 Jan 2010 at 12:48 PM:

   I gave birth to our gorgeous little girl last August, we found out at the 20 week scan that she would have a Bilateral Cleft Lip and Palate. She is due to have her lip repair in a couple of weeks and we are both very nervous. I love her big eyes and gorgeous smile.
   Reading the article and comments above has really helped me, and I know i’m not alone.
   Thank you all x

2. Posted by Hoyzie on 14 Jan 2010 at 11:43 AM:

   I also found out our daughter had a bilateral cleft lip and palatte at our 20 wk scan, it was terrifying at first but you soon come round we told everyone straight away, i was worried about the birth and how i would feel seeing my little girl but the second she was born we fell in love with her and so did everyone else my 2 other children were great with her we just explained she had a bad mouth and the doctors would fix it, they were happy with that.
   After her first op i really missed her huge smile, but she has got that back now she is a very lively little girl as we have always had her mixing with lots of children, she starts nursery this year but also has more surgery just hope she doesn’t miss to much school

3. Posted by Terri on 09 Feb 2010 at 03:11 AM:

   Hi. I myself, have cleft lip and palate, and at first my mum and dad were shocked, but with their love and support I grew up to be fine. I think that many people dont know alot about cleft lip and palate, and more people should be aware! I dont think you have anything to worry about. The surgeons do great jobs, and they are getting better all the time. Enjoy your pregnancy, and dont be scared! Talking about it makes it better:)
   x

4. Posted by debbie on 11 May 2010 at 07:35 AM:

   hi at my 20 weeks scan i was told my baby which is due aug 21 will have a cletf lip and probably palate there a great team ready to support us once baby is born but i just feel so upset by it all i have been reading the forums about beathing problems not be told that so now panicing also worried about people looking in pram and making comments i really hope me and my partner bond with this baby keep crying did anyone else feel like this or is it just me

5. Posted by stephanie putzer on 18 May 2010 at 07:55 AM:

   I had my 22 week scan a week ago and they advised me that i would have to come back as my baby boy was hiding his face and they couldnt examin his face so i would need another scan. I went yesterday and they told me that he has a cleft lip and palate im devasted but reading all ur comments is giving me peace of mind and seeing photos of these gawjus babies before and surgery as just brillant the works that the surgeons can do is just something else. My partner is in total shock and doesnt want me us to go ahead with the pregnacy he doesnt want to listen to anyone and doesnt want to speak to any nurses and see photos of babies who have had the this and what they look like afterwards. He is very angry, Im still in shock myself and it is going to take time but im trying to stay positive. Brendan hasnt hugged or put his arms round me, its such a good job i have such good sisters and my loving mum.

   I really hope brendan come round to it all and lets us show him pictures. This is our first baby and we wanted so much for everything to be perfect and i will love my little boy so much no matter what and i really do hope brendan sees it the way i do.

6. Posted by clare credland on 27 May 2010 at 07:30 AM:

   Bless you, I remember so vividly everything I felt and even now get tearful like it was yesterday. Everyone is very different and you have to allow people to come to terms with things at their pace. It is not at all what you want to hear when you go for your scans, but please don’t let him ruin how you feel about your baby. Despite the cleft that is exactly what it is ‘your baby’. I remember being very worried what people would think and worried that my husband said he was ok when he wasn’t really. Please allow your family and friends to support you and share your feelings with them. You’re are given alot of information aren’t you and feel overwhelmed and will need people to talk too. Give him space, his feelings are an issue he needs to deal with not you. You were in this together and a cleft is no-ones fault. I really hope he comes to terms with this. It is just such a shame you can’t fast forward and let him experience the love he would feel, its enough I assure you. My daughter is nearly 3 now and no different to anyone else. Yes, we had issues but they were overcome and in terms of problems things could have been so much worse. We have regular hearing and speech and language therapy appointments, but do you know people cannot believe how faint her scars are. Those that don’t know her would never guess.  I keep an eye on this forum so please if you want anyone to talk to, please reply. Have you given him the details of this website? he may decide to look into things when he’s ready and in his own time. Some people struggle with things like this and he’s obviously one of them. Have you been offered a link family?. I had regular contact with a couple who lived miles away and we never met but their support was invaluable. Particularly with the practical things and I needed another ‘mum’ to compare notes with. I wish you the very best. Take care of yourself and your precious baby x

7. Posted by barkernicola@hotmail.co.uk on 27 May 2010 at 12:47 PM:

   My son Tom will be 7 months old this sat, he has a cleft lip and palate. I was not sure how I was going to be with him when he was born the min I saw him I fell in love with him and after a few min and that first hold of him I new it was going to be ok. Tom had his lip repair 8 weeks ago and he looks really good. When I got the phone call to say that Tom was next on the list to have the lip repair I did not want him to have it done becaues I loved him the way he was he was my boy and to me nothing was wrong with him. I had a good chat to my cleft nures Heather I asked her 100 questions and she made me feel at easa about the surgry. My big worry was if I would love him as much with his lip repared the answer is yes just as much, I do miss his big smile. What I am trying to say is it is hard to get your head around when you find out at the scan that your child has a cleft lip and a palate but it is not the end of the world, we are supported every step of the way. I was really worried that people would stair at him we did get some of that but most people looked parst his lip and told me about a family member or a friend or a friend of a friend that had a cleft lip of palate and that how good they look ect. I just wanted to share ower story because I am prould to have Tom as my son. I have 2 other sons and it has not made any differents to them thay love him. I hope this helps you

8. Posted by stephanie putzer on 28 Jun 2010 at 11:59 AM:

   hi thanks for your replys they mean so much. Brendan has come round now and has dealt with this and is looking forward to meeting our little boy in sept. We have had brillant support from Heather at Alder Hay in liverpool they couldnt be more supportive. We had a 4d scan done in the womens hospital liverpool and the cleft lip has grown with him but the pictures we got of him gives us a clear understanding of what he will look like and he is absoulty gawjus and has chubby cheecks already and the cutest little nose just really can not wait now for him to be here. The only thing that worries me is the feeding of him as he will have to have a plastic palate in the roof of his mouth i think it will take time for us to get used to but we will have the best support from alder hay and both are families im sure of that.

   also i know full well that im going to parnoid and wont ever want to leave him with anyone until after he has the operations and if im thinking that like now its worrying to think what im going to actually be like once he is here....

   thanks again for your advise. take care

   stephanie xxxx

9. Posted by vicki on 08 Jul 2010 at 04:25 AM:

   hi! i had a scan yesterday at 30 weeks as there was concerns about my babys weight. during the scan we were told that our baby has a suspected cleft lip and palate. i was in total shock, couldn’t believe what i was being told. the hospital have arranged another scan for us on monday to confirm it.
   i was in total shock and am really worried about my baby having opererations and how she will be when born with feeding.reading your stories though has eased my mind a little. i cant wait to find out monday and and learn more about what to expect. im due september and can’t wait 1 bit! im still really very excited and really looking forward to meeting my lil girl to give her lots of love hugs and kisses.

10. Posted by Laura Spence on 07 Sep 2010 at 03:38 AM:

    Hi,
    We were diagnosed at 20 weeks also and within 2 hours of diagnosis the specialist nurse (Chris....the woman is an angel)got in touch and was at our house within 4 hours after that.  We were still in a state of shock as you feel you have let your baby down before he or she is born.  But after our 2 and a half hours talking to Chris we felt so much better.  Not quite to terms with it but didn’t see it as such a horrific ordeal as we initially did.  Yes he will have to be fed using a special bottle and yes his little face will have a gap etc.  But I am coming up to 26 weeks and we are getting a 2nd 3D scan, and I can’t wait.  My son is a little trooper already before he even gets here and has all his surgery. It’s us that have to adapt to his ways (feeding, no pacifier etc) and I know in my heart he will be gorgeous and when he’s 1 year old will not have a clue what he has been through. His problem is cosmetic and can be fixed. My husband and I have had 2 weeks of dark times, supporting each other through tears, anger and initial shock, but now we can’t wait to meet our son.
    Any parents who have just been diagnosed, all I can say it gets easier.  You do get you’re head around it and move on.  You prepare for his or her arrival and wonder what you were so afraid of. 
    Roll on 17th December, so I can see my baby sons little face. X

11. Posted by vicki on 07 Sep 2010 at 11:14 AM:

    Hello so glad someone as replied!
    firstly congtatulations on your pregnancy bless.
    everything you have said is so true and for us we couldnt beleive it had happened because you hear and read about these things but never think it could happen to you, dont know if you felt the same.
    ive had my little girl now and she is gorgeous bless her, she decided to arrive two weeks early. because we were so prepared it helped a lot. she has the palate to but luckily the front part formed normally which apparantly makes the operation a little easier.
    she has the special bottles and took to them straight away, we also found it easier then expected to feed her. the cleft nurse has been brilliant she arrived at the hospital about 5 to 6 hours after she was born and then came to see us at home the following week. we have been told that in a couple of weeks we will get some dates for her 1st op and weve also got our appointment later on this month to visit the childrens hospital and meet the team.
    im so dreading her ops but i know its for the best and like you say when thier 1 they wont know any diffrent.
    all as i can say is our babies having the cleft lip and palate makes them extra special and i wouldnt change it for the world.
    good luck with everything and if you would like to keep in touch that would be great. vicki, dean and baby Ebony x

12. Posted by Sarah on 16 Sep 2010 at 02:10 AM:

    Hi we went for our 20 week scan & were told our baby boy had a unilateral cleft lip but everything else looked fine. We were put in touch with the specialist team and visited by a lovely nurse who put us both at ease. However just been for another scan with a specialist who told us the cleft is bilateral and that this leaves a 5% chance there will be something else wrong with our baby. He told us there is an increased chance of chromosome abnormalities with a bilateral cleft and the worst case could be that he would only survive a few hours after birth. We have agreed to an amniocentisis on Monday but this comes with a 1% chance of miscarriage. I’m really scared I’m risking killing a healthy baby but don’t know what else to do I couldn’t bare it if he was born to only survive a few hours. Was anybody else told of this possibility as no one has mentioned it on here.
    Thanx

13. Posted by Sue Carroll on 30 Sep 2010 at 02:04 AM:

    Hi Sarah

    I am sorry to hear that you have had such a stressful experience. I hope that you have now been contacted by the cleft team who have put your mind to rest. If you have anything that is still worrying you and would like to have an informal chat please call me on 0207 833 4883.

    Kind regards
    Sue Carroll
    Deputy Chief Executive (CLAPA)

14. Posted by Hannah Conway on 30 Sep 2010 at 02:16 PM:

    Hello everybody! I commented on here before my son’s surgery and just thought that I would comment again for all of you who are awaiting surgery for their cleft lip / palate children.
    My son luckily only had the cleft lip and not the palate and his surgery was performed in January at Addenbrookes hospital. He is now 1 years old and you cannot even tell the difference! He is such a happy little boy and was such a fighter in the hospital. I am so proud of him and incredibly thankful to the team at Addenbrookes that made the experience bearable. I will not lie, the operation is a very tough time to go through but they are so robust and deal with it so much better than we do. If anyone is in need of a chat or would like to see picture of before, during and after the hospital stay then please contact me at . I had a very kind person swap hospital pictures with me before my sons operation and it really helped to go into a situation with some knowledge rather than going in blind. I am more than happy to talk to anyone with any concerns and help where i can too.

    My son went through a horrible ordeal but you would not be able to tell at all. It was basically all done and dusted in 3 weeks and he is such a happy little thing. I am was so scared before the operation and i realised now that it was the best possible thing that could have happened for him. This will shape his whole life and he will always be a fighter!!

15. Posted by joanne lewis on 18 Jan 2011 at 02:41 PM:

    i am 19 years old and found out today that my baby boy has cleft lip and pallet, i am 21 weeks pregnant, and my emotions are all over the place, im scared how i will react when the babys born, i will love him uncondisionly, i also have rh d negative blood, which im scared my body will reject my baby, also i am being tested for lieden factor 5, as it runs in my family, i am worried my babys health is at risk xx

16. Posted by Sue Carroll on 19 Jan 2011 at 06:29 AM:

    Dear Joanne

    If you have not already had a referral to the specialist cleft team i would suggest that you speak to the specialist cleft nurse about any issues that may be worrying you. The contact details are on this website in the Medical Information section. Alternatively, i would be happy to speak to you if you want to call me on 020 7833 4883.

    Regards

    Sue Carroll, Deputy CEO - CLAPA

17. Posted by martin raynor on 25 Mar 2011 at 12:19 AM:

    Sitting here reading all your stories(with a box of tissues!)i realise that we are not alone. Many doctors and family members have told us that there is nothing to worry about and that the surgeons can do miracles nowadays, but you still worry and think ‘why us’.

    My wife found out that she was pregnant on the 1st March and after a 7 DAY pregnancy she gave birth by C section to our baby girl Sophie-Mae on the 8th, Sophie-Mae was born with a bilaterel cleft lip and palete which was a big shock(not as big as having a baby in the first place mind) but you soon see right through that and see the baby for who she is. The help and support we are getting fron the cleft team is fantastic with tips on feeding to advice for the future.

    We love our new miricle for who she is and now we know we are not alone, so thank you clapa and all out there who understand.

    yours
    a very proud dad

18. Posted by andrea on 27 Apr 2011 at 09:12 AM:

    Hi we found out that my second son has a cleft lip not sure about the palate yet i was so shocked as my son rob whose 6 was perfect. i have my 3d scan next friday and i’m a little worried as to how server it is and how long the surgery will take also not sure when to tell rob or even what to tell him. Reading all your stories has helped me alot xxx

19. Posted by Fiona Louise on 28 Apr 2011 at 02:36 PM:

    Hi,

    I was born with a unilateral cleft lip and palate and I just wanted to tell you all a bit about my story…

    I had my lip repaired when I was 11 weeks and my soft palate repaired when I was 11 months. I didn’t have my hard palate repaired until I was 10 (I don’t know if this is different now). I can honestly say that apart from a few subsequent operations it hasn’t affected me at all.

    I’m now 24 years old and I studied French and Spanish at the University of Sheffield - any speech problems I had as a small child haven’t stopped me at all! Currently, I’m teaching English in Spain and planning what I want to do next.

    I just wanted to post and say that there really is nothing to worry about. Having a cleft lip and/or palate doesn’t have to affect (and probably won’t affect) your child at all. If anyone would like to see a picture of me now I have some, but don’t have any on my computer of me when I was younger.

20. Posted by Fredrik on 23 Feb 2012 at 04:22 AM:

    Hi,

    My partner had the 20 week scan yesterday, and we were shocked to be told that our beautiful baby girl has a cleft lip. The sonographer and consultant that we have talked to have been reluctant to show us real 3D images of the baby and tell us how bad it is, and we are left to research everything online. In the picture we did see, it was difficult to discern much than a large gaping hole from the mouth to the nose. We had such grand plans for our child, but now feel like this will take centre stage in her life instead of something more useful. It is all very upsetting and my poor partner(and I) can’t stop crying. What I find myself seeking out the most, is pictures of successful operations and stories of cleft kids that have made it. I am worried that she will be bullied in school, that she will have problems finding a husband, that she will have to worry that she passes it on to her kids. Life can be hard enough without adding problems like this.

    It is always good to read others stories though. Thank you for that.

Page 2 of 3 pages  <  1 2 3 >