Cleft lip diagnosis at 20 week scan

[Overtherainbow2021]

Hi ladies, as titled we discovered at our 20 week scan yesterday that our little man has a cleft lip. We’ve been referred to CLAPPA and have an appointment with them next week.

I’ve spent the last 24 hours just sobbing due to the shock. My OH is just numb and not really saying a lot so I’m worried about him.

I’m just looking for a hand hold in these initial days because I’m just absolutely devastated. I worried about so many other things due to having previous mcs I didn’t even consider a cleft lip. I do understand that it can be fixed but I suppose I’m (selfishly) grieving what I feel is that newborn bliss after birth. I feel as though the birth will be tainted by everyone’s concerns around the severity of the cleft. I feel like the remainder of my pregnancy will be spent feeling sad and worrying. And most of all I worry about sharing him with the world because may react badly or see him as less than perfect.

We are having an amnio to determine if there are any further issues, but I’m just so sad it is overwhelming. Please don’t judge me or take offence to anything I’ve said. I know there are worse things, I just don’t know how to deal with this. Thank you xx

I think it's quite normal to be shocked by finding this out, it's not what you were hoping for your baby and it can be scary. Don't be hard on yourselves!

A relative was born with this, just the lip not the palate but did have to have a small bone graft into their upper jaw a few years later. Thankfully there are lots of developments now that weren't available fifty years ago in regards to surgery etc. There are also a lot more support options online nowadays.

Do take photos in the early days before any surgery, it can help the child later in their life to see that their face wasn't something to be hidden away.

@PragmaticWench thank you so much.

Yes I’ve discussed with OH I wouldn’t ever want them to feel like we hid them away or were afraid. I think I’m just so anxious about dealing with peoples reactions? With time I guess I will just learn to deal with that just like anything else xxxx

Hi @Overtherainbow2021

How are you feeling?

At our 12 week scan they have picked up on a smaller lower jaw which is often linked to cleft lip/ palate. I am 15 weeks so it's still too early to tell 100% but I'm prepared that it might be possible.

Did they have any other concerns about the babies development?

Did you have further tests? Did you get the results? I paid for a harmony test- I'm just waiting for results.

I completely understand your feelings. Its not easy to accept that everything might not be perfect. X

Hi OP

Congratulations on your pregnancy!

I have been in your shoes so can completely relate. I work in one of the specialties that treats cleft patients, so actually picked up on the cleft myself at my 20 week scan before the sonographer worked out how to tell me. Ending up in the counselling room alone (during peak COVID times) was not ideal. Your feelings of shock and possibly grief are entirely normal and justified.

Have you been referred to your local cleft team as well as CLAPA? We had lots of antenatal support from a cleft nurse specialist which was great and really helped us to feel prepared.

All I can say is when our little bubba was born, all of my worries instantly melted away! It sounds very cliche but it’s true.

Maybe we were fortunate or maybe people were always very polite, but I actually found that people were so endeared by his big wide smile that they were really taken with him! We couldn’t go anywhere without people fussing over him.

I was actually very worried when he was going for his first operation at 4 months that I would struggle with his new appearance postoperatively as his cleft was just part of him and not something that I saw negatively (despite working in the field and having a higher understanding than most of the functional and psychological issues that can be encountered). Again, I needn’t have worried and he was still my wee boy when he came back to the ward with his new smile! We are currently awaiting his second, and hopefully last, operation and whilst I am not for a second looking forward to it, I feel at peace with the situation and diagnosis and just wish I could go back and reassure myself and my husband in those earlier days, so hopefully this is of some comfort to you!

Hi Ladies @OrganisedDisorder @catlady1234.

I hope you’re both ok, thank you for commenting!

@catlady1234 we went for an amniocentesis shortly after our 20 week scan, the first set of results came back clear we are just awaiting the full chromosomal report now. Everything else looked completely fine on the scan, but we have another scan on the 12th (I think this is a heart scan) and they’ve advised us that we will have monthly scans now to monitor baby. I was absolutely devastated for the first few days after the scan, I seem to feel a little better about it now but I still have my moments. Fingers crossed for you lovely but my inbox is always open if you need a chat xx

@OrganisedDisorder yes we have now met with the cleft team! And they were absolutely lovely. I’ve also joined a few Facebook groups and spoke with a few mums on there which has really helped. thank you so much for your words of reassurance. I’m trying my absolute best to continue enjoying my pregnancy and not worrying!!! So far…I’m only having the odd meltdown but in between I am okay xxxx

No worries at all! This was the first time I’ve commented on anything on here, I just couldn’t not stop by and try to reassure you!

It sounds like you’re being really well looked after so that’s great

Take one day at a time, allow yourself to have wee moments and I know it’s easy for me to say being on the other side of it now but your baby will be adorable and great! I often think how lucky we were to be chosen to be our wee boy’s parents and to have the opportunity to look after him 🥰

Happy to help if you need any further info xx

@OrganisedDisorder
Please may I message you? Just found out yesterday my little girl has a cleft lip x

Yes of course!

Hello
As my Dad and one of his brothers was born with a cleft palate, I have always assumed that there's a higher chance my child will be born with one. I've always felt really reassured to know that my child won't have to suffer like my Dad did with grim operations for 18 years from birth in the 1940s. He was a good looking man with a really interesting life and the thing that gave him confidence was the love of his parents. For reasons we don't understand his brother's cleft palate was somehow a source of shame in the family, and this brother's life turned out less positive. I guess I'm trying to share a perspective that I have from seeing this condition as one whose treatment has improved immeasurably and attitudes about which have also
dramatically shifted meaning your baby will be gorgeous and loved and happy.

[quote Overtherainbow2021]@PragmaticWench thank you so much.

Yes I’ve discussed with OH I wouldn’t ever want them to feel like we hid them away or were afraid. I think I’m just so anxious about dealing with peoples reactions? With time I guess I will just learn to deal with that just like anything else xxxx[/quote]
It doesn't matter what other people think. It's your baby, and he's going to be perfect, cleft lip or not!

The only reaction you need to worry about is your own. Once his little lip sewn back together, yes he'll have a little scar - but remember that scar is part of him, part of his growing, his strength and I'm sure in time you'll not can imagine him without it.

Thank you lovely @Dipsydoodlenoodle.

I am in such a better place. Time really does allow you to process things and at 33 weeks now I just cannot wait to meet him. And I really don’t care about what people will think! Seeing his face on 4D scans, I’ve just fallen in love.

@Rmw99 my inbox is always open too darling. Deep breath. I was inconsolable after my scan, and I couldn’t have got through it without the mums I have spoken with. Most of whom I message over WhatsApp!! I still speak to pragmaticwench now, I would’ve been lost without her xxx

@Overtherainbow2021@OrganisedDisorder
Have messged you both xx

I have a colleague who was born with a cleft lip and a partially cleft palate. Had a couple of surgeries as a baby (not minimising, but they weren't dramatic) and now at 40 he just has a minor scar and a slightly wonky smile which actually makes him look even more handsome.

And just to add, he's confident and successful.

@NotRainingToday thank you so much for sharing! I completely agree. Of all things to have diagnosed at a 20 week scan, I’ve learnt that a cleft lip and palate is nothing that is life limiting and really can be managed. It’s just getting over the shock! Xxxx

@NotRainingToday

I have a colleague who was born with a cleft lip and a partially cleft palate. Had a couple of surgeries as a baby (not minimising, but they weren't dramatic) and now at 40 he just has a minor scar and a slightly wonky smile which actually makes him look even more handsome.

I worked with someone who fell off his bike and ended up with a scar that looked like a cleft lip scar - I have to agree, the scar (once healed) made him look more handsome too.

Hi ladies ,
I’ve just found out my unborn son has a partial cleft lip unilateral . I’m heartbroken . Been told pallete is unlikely due to it being one sided and partial but others say it is likely ?? Cleft is 3mm does anyone have any pictures of a cleft of this size for comparison ? Feel so overwhelmed . Thanks for reading

Hi Lkakpk

Sorry for what you are going through, it’s such a stressful and uncertain time but please believe me, you will all be ok!

3mm sounds pretty tiny, I’m surprised they would even be able to pick that up from an ultrasound, did they manage to show you?

My son had a bilateral incomplete (or partial cleft) with no palate involvement xx

@Overtherainbow2021 how is your baby now he so born? Hope all is ok

Hi @OrganisedDisorder Thankyou for replying !
Basically I went to a private scan they spotted it and was referred on . They showed me - looked like a small black circle / missing blur .
How is your baby now ? We have been told palete is unlikely to be involved if only incomplete ? Where you told same ? Did they give you any reassurance before birth ? I felt reassured then spoke to a lot of people who told me prefer for palate involvement so now I’m scared !

Hey @Lkakpk how are you doing? Have a look at/ contact Jen from don’t get lippy on instagram. Both her and her son have a cleft lip and she has set up a wonderful support network for people, particularly at the diagnosis stage. She is absolutely lovely so do get in touch with her.

Hi @Lkakpk

Have you been referred to your local cleft team? They were a great source of reassurance for us!
We were never given any guarantees about the palate being involved or not so we basically prepared for it so we knew what we were doing for feeding. When he was born and we discovered it wasn’t it was a bonus!

My son is totally fine now. Beyond fine actually. He just had his 12-14 month health visitor assessment and is measuring on the 98th centile for height and weight and passing all his milestones.

He has had 2 surgeries for his lip repair and that should be him, he’s looking great! X

@Rrrob Thankyou I will look . I’m up and down . Still feel in complete shock !

@OrganisedDisorder Thankyou that’s reassuring ,
I’m just getting such mixed ideas about the palate I would love to get a clearer idea so I knew . Just worries me if it is involved there is a lot of health implications … yes we have had a meeting with a cleft nurse which was helpful . Everything seems to have moved so fast which again scares me slightly that it’s treated so promptly ?!

Reading this thread made me reflect on the fact that one of my cousin's was born with cleft lip/palate. We are now in our 50's and I see her a few times a year and I realise it is decades ago that I even thought about her lip. It is something that just becomes part of them. She speaks a little bit nasally but again, it is just her voice, like I have a list, and our friends and family just accept it.
Any diagnosis in utero is devastating as we just want our babies to be perfect but life is not perfect sadly.
All the best to all of you going through this. It will be okay and you will love them no less. Much of their surgery will be at an age that they won't remember forever too .❤️