Cleft lip on 20 week scan

[Namechangegardens]

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

Hi

I have no direct experience at all but I didn't want to read and run. I hope you doing ok and have managed to get some first hand advice/experience elsewhere. If nothing else hopefully my post gives this a little bump and someone can come along with something of use for you.

The cleft team and clapa are totally amazing. Our daughter had undiagnosed cleft palate and PRS and the help we have received and still receive is amazing. Birmingham children's is our base but with community support too from paediatrics, dieticians, dental, speech therapy. Our daughter is 3 now, surgery at 9 Months and you wouldn't know there was anything ever the matter with her. There is a care pathway right through to adulthood to make sure access to orthodontics etc is prioritised in teenage years.

Tube Feeding feels overwhelming but the training and kit is brilliant, it all just gets delivered every month. You learn how to do it and get on with it. Cleft babies tend to be weaned early about 4 months. It will fly by. It might be the specialist squeeze bottles work and tube feeding isn't needed, they're all different and the palate will be part of that decision.

Good luck, I hope you have the same wonderful support we've had from some fantastic specialists xxx

I don’t have direct experience, but someone I went to school with (I follow her on Instagram) her ds was born with a cleft lip. She successfully breastfed him for over a year, where she struggled with her other two babies. I don’t know how severe/any details other than the pictures she posted. He had surgery, and from the pictures has healed very well.

My son was born with a diagnosed incomplete cleft lip. Palate could only be checked after birth and in our case was normal. Feeding a baby with a cleft palate requires a squeezy bottle and the Cleft Team will give you excellent advice about this .
As for what people think I had nothing but positive comments and believe me babies with clefts are super cute!
My son had his repair at 5 months. It went well and although we missed his old smile we instantly loved his new one. My son is 11 now but the Perry and uncertainty I felt while pregnant disappeared the minute he was born.
It’s Cleft Palate awareness this week and CLAPA website clapa.com is very useful with lots of parents stories in there. There is a lot of support out there for ante natal and post natal
I wish you well with the rest of your pregnancy x

My 7 year old was born with a cleft lip and palate. Feeding can be tricky. We used the squeezy bottles and he did really well. My main problem was he always seemed to want feeding at 3pm when I was standing outside the school gate!

We had some really lovely reactions to him as well as a couple of horrible ones. I found for every horrible comment there was always someone jumping in and shouting them down straight away.

@Namechangegardens

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

Hello! I was born with a cleft palate (I'm now 23). I had three operations (one at 6 months, one at 2 and one at 4) to close the hole in my mouth. I then had speech therapy, orthodontist appointments and hearing tests throughout my childhood and the team who looked after me were incredible. They were so thorough and ensured I was able to speak clearly, that I got braces when I was a teen and that my hearing wasn't too impaired. My mum and dad have always said they were well supported and that they didn't worry about me much as I wasn't bothered in the slightest by hospital visits or the hole in my mouth.

My mum didn't breast feed me and sucking was quite difficult for me and wasn't recommended after my operation, as the motion of sucking would have pulled the stitches in my mouth loose. I was fed carefully using cups and turned into a chunky baby. My parents and the hospital had no concerns over my feeding or weight/general health. The only thing I struggled with was food getting stuck in the hole in my mouth. My mum became a master at helping me get it out and it was all sorted once I had my final operation at 4.

I didn't have a cleft lip so can't speak on that front I'm afraid, but I do know many children who did. A cleft lip and/or palate is a really common birth defect and hospital staff are generally really great at offering feeding advice and helping you through any difficult stages. Unsure if it's the same now, but I know I was closely monitored by orthodontists and hearing specialists up until the age of 18 to ensure I developed as normally as possible, which my parents and I found really useful. I had speech therapy from the ages of 5 until 7 and was discharged as I was able to speak well. Due to lots of speech therapy interventions I actually ended up with better speech than the majority of children in my class at school, haha

The hospital will provide lots of support and there are plenty of other cleft parents out there that can provide advice or hugs! I'm sure your baby will be born lovely and healthy and the hospital will do all they can to help him/her lead a healthy and happy life

Hi ladies ,
My unborn son will have a unilateral incomplete cleft lip . Been told it’s unlikely to have palate involvement . Is this due to being incomplete ? Online it seems to say most do have palate involvement ? So worried …