39 comments

1. Posted by Janet Hares on 21 Jul 2009 at 10:26 AM:

   I also had a bouncing baby boy of 9lbs 3oz in April 1985 after a healthy girl in January 1984 but was unaware at the time of the cleft lip and palate so his birth was a shock. My fears were how people were going to react to him and whether he would be bullied at school, well he is now a strapping 6ft 3in and 16stone never had any problems always everybodies friend through school and work (now in the RAF) slight scar below his nose but has not hindered him at all he is a credit too have as a son

2. Posted by Amy B. on 24 Jul 2009 at 08:35 AM:

   I found out at 20 weeks that my baby was going to have a cleft.  He is 16 months old now and doing great.  I started a blog documenting his journey in an effort to reach out to other families who may be going through something similiar.  Take a look.
   http://btbalittleblessing.blogspot.com/

3. Posted by chery gonzales on 25 Jul 2009 at 09:59 PM:

   i am 25 years old. i have two boys already. both normal. this is my third son which unfortunately happen to be like this.i have the same situation with you. right now, im 7mos. pregnant with my baby boy who also dignosed with cleft lip and palate when he was 20weeks old. i suppose to give birth on oct.11,2009.actually im still not ready to for it, but reading your story makes me feel better and hopeful...thanks.

4. Posted by Llio Davies on 27 Jul 2009 at 07:24 AM:

   I have just returned from my 20 week scan for my 2nd pregnancy and have been told that our baby has cleft lip and also might have cleft palate.  My son was born perfect with no probs at all and I am in a state of shock at the moment.  We are having a 3D scan next week that will tell us more.  I am very scared and nervous but reading these stories help thanx

5. Posted by Claire Watkins on 04 Aug 2009 at 12:19 AM:

   I have just found out from my 20 week scan that my baby boy has a cleft lip.  This is my second baby and we are so upset about the news, we were so excited when our first son was born, but at the moment we arent excited at all and are very worried.

6. Posted by Amy B. on 04 Aug 2009 at 07:09 AM:

   Claire - I just read your post regarding the recent news of your upcoming baby being born with a cleft lip.  I have to say, I understand your concerns.  I felt similar when I first found out, but I wanted to share with you that I wouldn’t trade my little guy for anything.  As hard as it is to watch him go through surgeries, etc… he is such a blessing.  Surgeons can do so much these days.  Even before his first surgery I fell in love with his smile and had a hard time seeing him after they repaired his lip.  He looked so different.  The scars are fading and I am used to it all now.  I hate watching him go through the pain of surgeries, but he has done great.  Feel free to check out my blog.  I have tried to document my journey in an effort to reach out to others going through similar challenges.  I have a new post I will be adding soon.  http://btbalittleblessing.blogspot.com/ Hope this helps a little.

7. Posted by claire m on 06 Aug 2009 at 06:09 AM:

   I have an 8 month old son called Layton. His cleft was diagnosed at my 23 week scan. He had a complete unilateral cleft lip and palate. It was a shock when we were told as we had already had children without clefts. I have 2 older boys, Louis 10yrs and Lennon 8yrs. The south thames cleft service were amazing, they contacted us by phone within an hour of our scan to arrange a home visit, they also gave us the clapa web address to give us something to look at until they could visit us.
   My main concerns were, having operations, feeding difficulties, speech problems and how it would affect my other children, what would they think of him??

   When the cleft nurse visited she had lots of leaflets eplaining everything!! One of the leaflets included the story and pictures above. We decided once we’d read through everything that we would use that one to explain to Louis and Lennon. We sat them down (we’d known for about a week)and we said that at the scan they had said that the baby was doing very well but his mouth had stopped growing properly, it wasn’t a big problem but he would need a few opperations to fix him. We said he might look a bit different would they like to see a picture of a baby like our’s. They said yes so we showed them the leaflet. They were absolutly fine i couldn’t have wished for a better response! They needed to be reassured that the babies are not in pain but that was it. They even asked to read the story so we let them. We also encouraged the to tell people, so when friends family etc said “oh do you know what your having?” the boys said “Yes a little brother, with a cleft lip and palate!” i’m so proud of all my boys, Layton for being brave throughout his operations and Louis and Lennon for coping so well and not being ashamed or embarrassed for a single second. When Layton was born they took pictures in to show and tell at school and explain in front of their class’s what a cleft lip and palate is.

   As for Layton he was born 27/11/08, had his lip repair op on 23/03/09 and recently his palate repair op 14/07/09. When Layton was born i was not even slightly shocked because he look exactly as i expected-as i’d had a 4d scan, i’d recomend it to anyone with a cleft baby, as soon as you have that picture all your anxiety goes because you know what to expect!Layton was a bit uncomfortable after the op but not as bad as i had imagined and it looks amazing. He’s a happy bouncing boy and although you wouldn’t wish for it a cleft is nothing to be scared of!!

8. Posted by povey34 on 06 Aug 2009 at 11:59 AM:

   My husband Paul was born with a complete unilateral cleft lip and palate so we were always aware that our children may also be born with a cleft. Our first baby Isobel was scanned at 20 weeks and the first thing the doctor said was ‘lip and palate are fine’ we were actually quite surprised, but pleased that he’d looked but it had been detailed in my antenatal notes. When pregnant with our second we went for our 20 week scan, however, the system had changed and instead of going to the antenatal department in the hospital we were sent to the scanning department. The woman who did the scan was really vague, she couldn’t tell us the sex of out baby and when I had to ask about the lip and palate she seemed to avoid the issue. It was only when I had to go and see the consultant at 25 weeks about how my baby was to be delivered (having struggled in my first labour) he asked me if I had any other questions. I raised my concerns about my 20 week scan. He instantly booked me in the following day with the doctor who had done my 20 week scan with Isobel. I knew almost instantly during the scan, the lovely doctor told me I was having a little girl then he went very quiet, looked, looked again. He told me she had a bilateral cleft lip but he couldn’t see the palate. I was on my own and held it together but the staff being so nice made me want to cry. I was told I had to ring my husband at work - not pleasant but it was something we were mentally prepared for.
   I’m so glad we found out, I live with a gorgeous man who has survived and succeeded in life with a cleft and that gives you more confidence than you could possibly imagine, but you still worry for your baby. Sometimes I felt as though my pregnancy had been hyjaked by the NHS, the system was really supportive but I just wanted to be pregnant so sometimes I resented the calls from the Cleft team.
   Madeline Rose was born by emergency section 22/6/07(nothing to do with the cleft) she was absolutely beautiful and exactly how we expected her to look. I was devastated by the thought of her first operation and really didn’t want it to happen, her smile was magical and I didn’t want them to take it away (I think outsiders thought I was mad) and she really did look completely different the surgeon having made a fantastic job , although I struggled to see it at the time I just wanted my Madeline back. That was November ‘07 and now she is a really gorgoeus 2 year old. She is as hard as nails and has bounced back from all her ops really well with continuing smiles throughout, she makes me feel incredibly humble that someone so small can be so brave.

   I have tried to raise awareness of clefts by taking Madeline into the secondary school where I taught so the kids could meet her, it is so surprising how little people know considering it is 1 in 700 births where this happens. Fear and ignorance in adults is more of a problem than anything else, kids accept it completely. If, when we were out, I saw an adult staring at her in the pram I would stop and tell them she had a cleft it was always a way for people to ask questions. Knowledge is power and the more people understand about clefts the less problems our children will have in the future.

9. Posted by barkernicola@hotmail.co.uk on 16 Aug 2009 at 06:23 AM:

   This is my 3rd pregnancy I am 31 weeks, we found out at the 20 week scan that ower little boy has a clft lip and palate. We have 2 boys Ben 3 and Joe 1 so the news of the 3rd was hard to take has both ower other lads are fine. It has taken me and my husdand some time to get ower heads around the news, it is nice that we are not the only parents going throw this. Ower little man is due on the 24 oct 09 I can not wait to see him. My son Ben told me the other week that the baby in my belly has a poorly face and that he will give him a kiss and he will be ok.

10. Posted by claire m on 25 Aug 2009 at 08:56 AM:

    nicola, honestly don’t worry.
    your boys will love him 2 pieces! and i promise he will be gorgeous when he’s born!

11. Posted by Jen Van Maarion on 27 Aug 2009 at 04:20 PM:

    I found out just this past Friday, Aug. 21, that our little girl has a cleft lip and possibly a cleft palate.  It’s so hard to believe, when seeing her the ultra sounds, that anything could be wrong with this little person!
    My husband and my mom have both been doing their research and have assured me that babies who have this look completely normal after the surgeries but I must admit it was hard for me to even want to look at any pictures because I knew I would start to cry.
    But my mother directed me to this site and all these stories and posts and in just minutes I felt so much peace about everything.  Just hearing about all the outcomes and all the love you all feel for your little ones gives me hope and has relieved a lot of my worries.
    I know there is a long road ahead of us but knowing that we are not alone in all of this makes everything that much more bearable.  Thank you all for sharing

12. Posted by barkernicola@hotmail.co.uk on 29 Aug 2009 at 02:41 AM:

    Thank you claire for what you have said. Ben keeps asking when the new baby is coming as he wants to given him a kiss and hug.

13. Posted by cherry on 06 Sep 2009 at 12:10 AM:

    yup thanks to all your encouragement! it’s so funny to think that we have the same situation right now. especially us, barkernicola. my 3rd baby boy is due on oct 11 ‘09. just a week to you.... GOD has the reason for this. we’re having the greatest gift from HIM soon. goodluck to both of us....

14. Posted by cherry g. on 10 Sep 2009 at 01:15 AM:

    hi amy. iv checked your blog once and i felt so hopeful and blessed like you. but still i can’t stop myself from worrying especially now, because i can feel that i am giving birth soon.i’m trying to be strong like you, but knowing that i am only a domestic helper here in hongkong, im worried how much it cost for the surgery. my tears fell out when i saw the pictures of your son from his scan til his surgery. and i felt what’s in your heart as a mother especially when you hold him after the surgery and still in pain. when you’re feeding him with tube and there’s still blood in his mouth. my heart feels so painful for my son who’s still in my tummy. im still afraid for the things that might happen when i give birth.i wish i can be strong like all of you..

15. Posted by Amy B. on 16 Sep 2009 at 03:44 AM:

    Cherry-Everyone has their moments when they feel scared and overwhelmed.  I have had plenty of those moments.  That is partially why I started by blog documenting my son’s journey; hoping it would answer many questions and ease many fears new parents face.  I believe that by God’s grace I have been able to be strong when needed for my child.  Your mother instincts will kick in and you will do whatever it takes to care for your child.  I’m not sure what assistance you can get in your hometown with the surgery, but there are organizations out there that can help.  Try checking out Operation Smiles online and inquire with them as a start.  Good luck and keep us updated.

16. Posted by Sophie Parkin on 16 Sep 2009 at 08:08 AM:

    Hi all,
    I have just had my first child, a baby boy (DJ) on 6.9.09, after a long labour, and after going through an Emergency C-Section (undiagnosed breech) my husband and I were presented with our baby to the words of “Everything is fine, he’s lovely and healthy, and apart from the obvious cleft lip and palate he’s doing well”
    This was a massive shock to my husband, who had to leave me in theatre, as DJ was an undiagnosed Bi-Lateral CLAP, but to me it wasnt a problem. He is the most gorgeous baby I have ever seen and it did not disturb me in the slightest. The way I see it is that out of all the parents in the world we have been sent this little boy to love and care for as we are a strong unit and will bring him up fabulously, whereas others may not have been able to be this strong.
    My husband admitted it was a huge shock, but it wasnt the CLAP that bothered him, more the prodding and poking that DJ would incur to make him better.
    He is 10 days old now, and my husband and I are living each day as it comes and enjoying every minute, and DJ gave us his first smile yesterday (and it was a genuine smile) which made it even more special.
    I know that I will be a mother who will miss DJ’s CLAP when it is repaired, and would say to any parent who knows about their childs CLAP, please do not worry, imagine if you didnt know? Like me and my husband? Just Love your child for who they are and not what they look like, everything will be OK. And it is amazing how everyone knows someone who had/has a Cleft Lip and/or Palete. Your child will be beautiful no matter what x

17. Posted by Hannah Conway on 11 Oct 2009 at 11:04 AM:

    My son was born on the 23/09/09 with a cleft lip. In both of my scans he was facing my spine so my husband and I were unaware of the condition that our son would be born with. When he was born i was in complete shock, I had had a very long and difficult labour and the first things that went through my head were ‘Was is something I did?’ and ‘What will people think of him’? Can I just say to anyone who is worried about their child being born with a cleft lip or palete that these things are completely normal to think! It is also completely normal to find it hard to come to terms with the condition. Please Please dont feel like a bad mum like I did becasue you will get yourself into a horrible downward spiral! My son is booked in for his operation on 18th of January and I am quite worried about how he will cope but to be honest I think we as parents take it worse than the little brave soldiers! I was so worried about how people, especially strangers, would react but everyone has been brilliant! It is suprising how many people know of someone who has a cleft lip and as long as you are open about the condition and dont shy away from it then it gives people a chance to ask questions! And a chance for you to answer them and throw away any presumptions they might have formed!

18. Posted by cherry gonzales on 24 Oct 2009 at 08:27 PM:

    hi everyone...i already gave birth last oct19.
    my son is 9days overdue thats why they need to induced me....now i know what you feel when you first saw ur baby....
    my baby boy was diagnosed to hv cleft lip nd palate. but when i gave birth we found out that it is only cleft lip....
    palate is ok....
    thats why there is nothing impossible to happen.....
    cheer up to everyone!!!!!!!

19. Posted by barkernicola@hotmail.co.uk on 10 Nov 2009 at 09:53 AM:

    Hi I gave birth to our son Tom on the 29/10/09 we knew that he had a cleft lip and palate. I was not sure how I would feel when I saw him for the first time. I felt the proudest mum,he is lovley looking, me and my husband both think that he is perfect. There is always something to look forward to.

20. Posted by clare credland on 22 Nov 2009 at 01:44 PM:

    My empathy goes out to you all, been there, done it and got the t.shirt as they say.  I found out at 20 week scan that my precious baby had a complete unilateral cleft lip and palate, she is now two years old and a very independent, strong willed little lady. Shocked and tearful was how I felt for some time.  When she was born we had been very well prepared by our fantastic specialist team.  She has undergone three operations on two seperate occasions. The results are fantastic and the cleft team are very pleased with the surgical results and her progress. I have another daughter who had no problems but the love we feel for both our daughters is un-describable. I sobbed for days after the antenatal scan and can still rememeber very vividly my emotions whilst she was in hospital. But she is wonderful and we are very proud of her. My biggest worry of how local people would react particularly my elder daughters school friends, was unfounded, I need not have worried. My advice is talk to people and explain, I had a pleasant surprise, but I remained very defensive for a long time. You get through the first few months and through the surgery times a bit at a time. You will feel anxious, worried and scared, plus many other things.  Listen to the specialists and ask for help if you need too. Enjoy your baby, that is what they are after all, a baby who needs love and quality time. No different to any other baby. I look back at photos and although she is gorgeous now without any doubt, I miss the huge sparkly eyes and widened smile that used to take over her face.  I will never forget it. I wish you all the very best xx

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