Cleft lip diagnosis

[Maya88]

Hello does anyone have any experiences of a cleft lip diagnosis? I am 21 weeks pregnant and it was diagnosed today officially by fetal medicine. They called it an ‘incomplete bilateral cleft lip’ I think, and the doctor said it looked ‘minor’, but I’m not sure in comparison to what or what that even means.

I’ll be honest, I was totally naive to this world, I had no idea how complex of a condition this could be if the palate is involved (which we’ve been told they can’t confirm either way until the baby is born), and the possibility of tube feeding was mentioned. It all feels incredibly overwhelming.

I just cannot get it out of my head that somehow caused this, I have done everything by the book but I had to take antibiotics in the first trimester and I’m wondering if this is now the cause. I feel absolutely lost at sea. I loved breastfeeding my first but this sounds like it’s not a possibility now.

I have cried all day, and I’m trying to be so thankful that everything else looked ok according to the fetal medicine team, but I can’t help but just feel I’ve already let my baby down and the pain and difficulty it’s going to have to endure. And the judgement of other people over what I think will still be a beautiful face.

No idea but hoping someone who knows more will be along soon 💐

My son was born with this 19 years ago (not picked up until he was born) I’m biased as his mum but he’s a really handsome boy and people are always surprised when I tell them he was born with a small cleft lip.

he required surgery at Addenbrookes at 6 weeks old, repairing the lip which also realigns the nose he had a support in his nose for a couple of weeks post surgery and that was it for max fax surgery. I breast fed him for 16 months.

He also got all his Orthodontic’s treatment as a teen through Addenbrookes and has great teeth now. Most teens need braces these days so it was good to have an excellent dental service already booked at the hospital for free.

i know I’m putting a positive spin on it and it’s so hard to come to terms with initially but you will have a beautiful baby xx

Sorry to hear about this. I don't have personal experience but I just wanted to remind you that it's not your fault so please don't blame yourself.

I'm a teacher and one of my favourite students ever had a cleft lip and went through surgeries in the years that I taught him. By the end of it you would never have known he'd had one. He was such a happy kid with lots of friends and talent, it never ever held him back.

Is there help available to you? I'm not from the UK and don't live there but is there someone you can talk to about your own feelings, and a team you can talk to about what it might look like after birth so you can be prepared?

CLAPA would be a good organisation to reach out to, we never used them personally as my son’s cleft was small and quickly treated. The cleft team at your local hospital with Maxillofacial facilities will also reach out and provide support.

Thank you for your insight this is really helpful. when you say ‘small’, do you happen to remember what type of cleft he has/had? Did he just have the one operation then?

i got it wrong in my original message the baby has a 2mm incomplete unilateral cleft lip, so just on the one side. It was so small our first sonographer almost didn’t see it.

Really happy to hear you were able to breastfeed, I’m praying I’ll also be able to as I breastfed my first for 2 years.

Thank you yes I think the cleft team will call me soon, but I’m not sure when, I’m hoping I’ll feel better once I’ve talked it through with them.

Thank you, when you say small, did you ever get any measurements/details? Ours is a unilateral incomplete cleft lip of 2mm, but I’m not really sure what this means in real life.

I’ve just done some research and 2mm is considered mild. It says that this doesn’t rule out the palate being involved though. I know a little girl who was born with a cleft and she is thriving. They did such a good job with her op and she’s thriving.

Mayaa88 I can’t recall measurements but I believe at the time it was described as a unilateral microform cleft- one surgery at 6 weeks was the only surgery required, he continued to have the option to have his nose fixed at 18, but the surgery at such a young age meant his nose realigned and is perfect (the nose appears a bit wonky prior to surgery due to the cleft but straightens post surgery)

He also was diagnosed with a sub mucosal cleft years later (slightly affecting the back of his palate) sometimes when he eats rice and sneezes a bit comes out his nose- he doesn’t require any treatment for this.

His surgery took four hours at 6 weeks which is emotionally challenging, he took a day or so to pick up with the breastfeeding again post surgery as his lip had changed but then we honestly never looked back, handsome happy boy. The cleft team offer all sorts of additional support but luckily with his small cleft it wasn’t needed.

i believe the actors Tom Burke may have had this type of cleft and surgery and I feel my son has a similar look, noticeable to someone wh is aware of cleft surgery but just a handsome bloke to everyone else.

My nephew was born with a severe cleft lip, he had an operation at 5 months and now you would never know. I’m sorry I’m not sure about breastfeeding but it has never affected him.

Hello! My DS was born with a cleft lip and palate just under 5 years ago - they were pretty sure he had a cleft palate while I was pregnant although they couldn’t confirm it till he was born. If your little one does just have the cleft lip then you should be able to breastfeed: it’s the palate that rules out breastfeeding.

I would cautiously second the CLAPA site only because I found some of the stories and information quite overwhelming when I was trying to process everything! What DH and I found was that the first year was all about the cleft for us as DS had to have the two operations, it was tricky for him to feed with the special bottles etc, poor love, he also needed to have his hearing checked etc as part of their standard checks and now he’s 5 it’s barely part of his life. We have photos of him as an (adorable) baby up at home and that’s usually the only time other people realise he had the cleft lip; the surgery is SO good now. I remember saying to the surgeon I didn’t want him to have the surgery when it came to it as I had got so used to his massive smile, and I couldn’t have ever imagined saying that when I first heard about the cleft. Do please DM me with any questions if you’d like; I know it’s a lot to get your head around.

The cleft nurses you’re assigned when they’re born are brilliant by the way; they are so kind and reassuring.

I know a woman who had a cleft lip; she has a very thin scar above her mouth, that’s it. She’s honestly very attractive, plus a lovely person!

No personal experience of this but I know the actors Tom Burke and Joaquin Phoenix had this - both handsome chaps

Oh and I recognise the guilt so much, @maya88.i was very lucky that the fetal medicine people were so firm that it was just bad luck and nothing I had done but it’s something that I think it’s hard to understand if you haven’t been in that circumstance yourself.

Our hospital offered sessions with a psychologist before he was born, and DH and I def felt that helped us to remind us of all the exciting things that lay ahead for our little one and us. He’s currently playing a passionate game of knights with his Dad and your post has reminded me of how intense that period was and how I could never have imagined it would just be a tiny thing a few years on.

No direct experience of babies with a cleft diagnosis but DS and I spend a fair amount of time in surgical ward at BCH and they do a lot of cleft ops. It's pretty much routine surgery for them, and I'm yet to see a baby who isn't beautiful. Anyone who doesn't think your baby is gorgeous doesn't deserve their opinion being heard. It's also amazing how neatly they heal.

My daughter was born with a unilateral cleft lip, when I was told at an early scan wow the worries and the constant googling and looking at pictures and the emotions I went through was through the roof. She is now a happy healthy chunky two month old, she had no problems feeding from the specialised bottles provided by clappa, I couldn’t breast feed unfortunately but she is thriving regardless. I love her smile now and I will love her new smile, I will be sad to see her cleft lip go! Trust me when you see your baba all your worries will go away, I hope everything goes smoothly for you!

I was born with a cleft palate and honestly, it never impacted me. It was all fixed by the time I was 3, but the NHS gave my parents so much support for me, including speech and language therapy (which I didn’t really need but they took anyway because why not!) and enhanced dentist treatment until I was 18. I remember getting braces for free whilst some of my friends parents had to pay for theirs and thinking how lucky I was. The support from the NHS was second to none but I have to say that even without it it wouldn’t have held me back. I remember back then it was the most common birth defect in babies, I imagine it still is now.

I’m so sorry to hear you’re so worried and am sending you so much love ❤️ Please chat to your midwife and reach out for support. I really hope I can assure you that this is nothing to worry about; although it might be frightening to hear and a big shock, the NHS is incredible and so experienced with these things now that it won’t be a problem at all. Things may be a little different than you imagined but hopefully the support is still in place for parents of cleft babies like it was when I was little. The main things my parents needed support with was feeding as I apparently struggled to breastfeed and the cleft often made milk run out through my nose (before it was fixed), which was nothing to panic about but a bit of a pain my mum said!

My son was born with a unilateral cleft lip and palate, which was undiagnosed before birth. I don’t know where you are but my experience of NHS has been second to none.

Please don’t blame yourself.

Hi OP, sorry I'm a bit late to the chat and apologies for the essay....

My daughter was born with a complete unilateral cleft lip and palate - she's just turned 4. I'm a regular volunteer with CLAPA and I help to facilitate the antenatal support groups for families with a recent diagnosis so I do have a decent bit of experience in the area.

There was no history of cleft in my family and it was a complete shock to us at my 20 week scan. Like you, I was absolutely sick with guilt at how I might have caused it despite doing everything "properly" to the letter. The fact is, nobody will ever be able to tell you and I how your baby's cleft might have occurred (unless there's a clear genetic link in your family) so please try and make peace with yourself in the knowledge that it is incredibly unlikely that anything that you did might have caused this, and that knowing how the cleft has occurred ultimately wouldn't change anything anyway. The care pathway is the same regardless.

I cried for weeks post-diagnosis, refused to engaged properly with my pregnancy out of anger at the situation and, once I felt ready to, I reached out to CLAPA and spoke with a parent-peer counsellor who was amazing. I'd strongly recommend doing this. The antenatal support groups are fab - they're always attended by a cleft nurse specialist from one of the regional teams who can help to answer specific questions and it's a great way to start the journey. I've seen families cry many a tear at the groups and I've cried with them - it's a very safe space.

Cleft palates are generally more common in complete cleft lips so there is the chance your baby's palate will be unaffected. It's incredibly difficult for a sonographer to see a cleft palate on an ultrasound so whoever you ask, you're likely to be told that you won't know until they're born and assessed. I was heartbroken that I couldn't directly breastfeed but I got on with feeding with expressed milk and harvested colostrum just fine as I felt it was the next best thing I could do. I still consider my child to have been breastfed! We never had a moment's concern feeding. It's likely that they'll pop a feeding tube in for the baby as soon as they're born just as a failsafe to be able to get some milk into them in case of difficulty. My daughter was fitted with a tube and as soon as she'd been assessed by our cleft nurse specialist (less than 24 hours after birth) the tube came straight out and she was on a bottle - and this is with a considerable cleft palate. She never needed the tube, it was just in-case.

I completely understand your fears about other peoples' judgments and I spent many an hour having imaginary arguments in my head with people so that I had responses prepared just in case. Hand on my heart, people only ever looked at my baby with love and never once made a cruel comment or looked at her "funny". You will be so fiercely proud of your baby that you'll almost will someone to test you. A young lady approached me at a local adventure playground very recently who had been born with a cleft herself and she noticed that my daughter had been too. The lady told me that my daughter's confidence is amazing and that she will be an absolute star growing up. The lady herself had been born with a complete bilateral cleft and was very affected. She's beautiful, glamorous, very fashionable, eloquent and intelligent, set to get married next year and was there with her own daughter who is not cleft-affected. She was happy to tell me that she'd never been bullied, had always felt confident in herself and she could see my daughter heading in the same direction. I was so very proud I cried on the spot. Your attitude will matter so much so let that love and pride shine through once the fear subsides. My daughter's lip repair is incredible and most people would never know any different - so much so that I tell anyone who will listen that she was born with a cleft because I am proud. It doesn't define my child but it is part of her story. We bought a specially customised teddy for my daughter which had a cleft scar sewn onto it on the same side as her cleft and it was there with her the day she was born.

Honestly the fact that you are even worried about the prospect of letting your baby down shows what a great parent you're about to be. With a few years' parenting under my belt I can tell you that I've let my child down in a few ways (gave her the wrong pizza, short-cut a bedtime story after a long day, threw away a beloved broken toy, etc) but I have come to know that I have never let her down when it has come to her cleft or how I could have caused it, and neither will you.

After her surgeries, pain management has been excellent and I have seen my second-born son in infinitely worse states with colds, coughs and bugs than I ever saw my daughter in post-surgery. All of it is hardest on your heart as a parent in my honest opinion. If it helps, I came so full circle from my fears during pregnancy that I happily and proudly volunteer with CLAPA now, so if I can be any sort of indication of what you have to come, I would like to reassure you that you're not alone with your feelings and that you're still a parent just like any other. I don't see myself as a "cleft mum". I'm just a mum of a child who happened to be born with a cleft. I get sass and attitude just like anyone else from a child who we thought would never be able to speak "properly". How wrong we were!

If you would like to chat further, please feel free to send me a direct message. Happy to connect and answer any questions or be a safe place for you to share any thoughts. Be kind to yourself and good luck with the rest of your pregnancy! x