Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Cleft lip on 20 week scan

7 replies

Namechangegardens · 24/04/2021 08:14

Hi everyone,

We had 20 week scan yesterday which showed our boy has a cleft lip (they can't tell yet whether involving palate). I was very grateful that everything else on the scan was totally normal. However, it's starting to sink in that feeding etc will not be how I've been imagining.

Foetal medicine were amazing and saw me same day to confirm the diagnosis, and the cleft team got in touch at 7pm last night! Sounds like they're going to be incredibly helpful. I'm just so glad it's treatable.

Is anyone else going through this? Any positive stories?

My main worry is the feeding, also slightly nervous about people's reactions (I couldn't care less what he looks like, and I know people might stare, but don't want pity or negative comments!)

X

OP posts:
MrsMiddleMother · 24/04/2021 22:59

Sorry I have no advice, just didn't want to read and run ❤ I'm glad your boy is okay other than a cleft lip, you sound like you'll be a wonderful mother x

SenoraSurf · 24/04/2021 23:15

My friends baby boy had a cleft lip. He had surgery when he was around 1 year old and he's now 3. He is the most handsome little boy and his scar is practically non existent. I'm not a close enough friend to know the ins and outs but they've managed amazingly.

Good luck op xxxx

Finalbaby3 · 25/04/2021 00:00

I have close family that have had 2 babies with clefts. Feeding is slightly trickier but there are bottles designed for clefts so it's not much different. Surgery is amazing these days and their oldest you can't even tell. The youngest is very young so no surgery yet but will be soon when he is around 3-4 months-ish. As for people's reactions, most people see past it completely and don't react other than to comment on how beautiful the baby is. Also, the cleft team are outstanding and extremely supportive. You and your baby will be in very good hands 🙂

PrincipalKraft · 18/06/2021 17:34

Hi @Namechangegardens,

A bit late to the thread here sorry! Congratulations on your little boy, I hope you've been enjoying your pregnancy so far.

We also had a cleft lip (and palate) diagnosis at the 20 week scan of my little girl. I'm now 30 weeks along and she looks totally healthy, same as your son, and I had the exact same concerns that you did too.

I'd definitely advise that you have a really good read through the CLAPA website and speak to a parent peer supporter which is what we did. You may have been put in touch with your Cleft Nurse Specialist by now too - don't be afraid to ask them any questions at all - particularly around feeding as I was very worried about this and our nurse really put my mind at rest. I sent our nurse a monster list of questions and she addressed every one. Have a read up about colostrum harvesting as this might settle your mind about very early days feeding before you find what bottles/methods will work best in the event that you can't breastfeed (if you did want to try breastfeeding that is - I don't want to make any assumptions!)

We were invited to take part in a new study for parents who've had an antenatal cleft diagnosis called The Cleft Collective Birth Cohort Study. We figured our baby will be afforded such great care because of past research and decided that if we could give something back and assist with improving care even more, then why not! That helped us to feel involved and more positive. I'm sure you could ask your Cleft Nurse about this if you haven't heard about it already.

If you use Instagram, I started following other cleft positivity accounts and parents of babies with clefts so that you can see how very real people go through it all. That helped me LOADS because I realised that the other parents were just typical, normal people like us and celebrating the lives of their gorgeous babies just like anyone else. It helped me to understand what a normal thing this is to be born with now. Way more common than I realised. On the spectrum of things parents can be told at a 20 week scan, we eventually realised we'd been lucky. I don't say that to belittle your worries at all - of course we all hope for a "normal" 20 week scan which you and I didn't have. But this is so, so manageable and almost everyone I've spoken to knows someone with a cleft; a friend/friend's child/went to school with a child who had a cleft etc. And they all said "you wouldn't even know it if you hadn't already been told".

I found that mentally framing the news in a different way helped me to digest it better too. I very much went through a difficult "why us" period, but tried to reframe it as "there was a 1 in 700 chance this could happen, I'm so lucky that she chose us". Your son's cleft developed and has been this way since he was probably about 5/6 weeks in the womb; he's the same baby you've known in there all along and no doubt you've loved every second of him so far Smile Once I'd got over the shock of the news initially, I was overwhelmed with love and already felt proud even though I knew my experience of motherhood would be slightly different to what I'd envisioned. And it is totally OK for you to grieve the experience you know you may not have now - please allow yourself this.

In all honesty, I am still struggling to accept that I almost certainly won't be able to breastfeed so if you are struggling with this too; I understand your heartache. Just remind yourself that there are X number of reasons why breastfeeding might not have worked out for you and baby totally unrelated to clefts. Same with concerns about scarring, speech or hearing development problems (which are only ever a maybe, by the way) - anybody's baby can be born with these and need some extra help or have a nasty bump and need a few stitches any time. The difference is we cleft parents just get an extra heads' up about it Grin

When it comes to peoples' reactions, I haven't got there yet but I do share your concern! People probably will stare, yes. I'm already prepping a list of responses; "yes she's gorgeous isn't she!", "I can't stop staring at her either!" or anything considerably less friendly if people are unkind. Time to grow a thick skin and accept that we can't control peoples' reactions. I wouldn't worry about giving a curt response to anyone who was unkind about any baby though! They'd deserve what they got.

Anyway, sorry for the essay but I wanted to let you know what has helped me feel positive and extend that to you. You're going to be a wonderful mum and who knows - maybe we'll find ourselves meeting at a CLAPA event or something in future!! Feel free to DM if you would like to chat more about anything x

Peach01 · 18/06/2021 17:53

I don't have any experience from a parental side but a tiny bit from the medical side and I have to say the units are amazing, I made some feeding plates for the babies. Everyone will be there to help overcome any obstacles and as others have said the surgery is fantastic. Those who work in the units are so dedicated.
It's really good advice to be involved in other support groups where mums are going through the same. Your situation will be unique compared to other mums and having people there who really understand will be so valuable.

Overtherainbow2021 · 23/06/2021 15:22

Hi @Namechangegardens. I’ve come across your thread during a search. I found out yesterday that our baby has a cleft lip and have really really struggled over the last 24 hours. I just wanted to ask how you were and how things were getting on? Xxxx

Bells3032 · 23/06/2021 15:55

No experiences with babies but my dad was born with a cleft palate in the 1950s. He was given surgery when he was 3 by the guy that invented the surgery. The scar is so tiny that unless you knew it was there you'd never even see it...and that was 60 years ago. So i am sure now the treatments options are so much better.

I don't really have any other advice but good luck and please don't put too much pressure on that feeding may not be exactly as expected. I am sure it will still be more amazing than you can dream

New posts on this thread. Refresh page
Swipe left for the next trending thread