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(11 Posts)
user1490100454 Sat 09-Sep-17 12:44:20

Hi everyone,

Just wondered if anyone else has or is expecting a child with a cleft lip or palate?
We found out earlier in the week at my 20 week scan our little boy will be born with a cleft lip.
Things have moved very quickly for us and we have been referred to a specialist and had 3d and 4D scanning to establish how severe this is, for us this means he will be born with a unilateral (one side) cleft with little or minimal damage to the palate.
If anyone has any support or wants to chat as I can't see another post about this on here smile

BlueIsTheNewBlue Sun 10-Sep-17 00:06:54

I have a little boy who's now 2 who was born with a Cleft lip and palate. We also found out at our 20 week scan. I found it very scary and emotional when I first found out. Because although it's not something that's life threatening it's still something that you know that's gonna make your little ones life alittle harder. But it's alot easier than I thought it would be and my little boy has sailed through his operations and shouldn't have another until after he's 8, yes there are bumps along the way and you will spend alot of time at hospital appointments, but it's worth it and I still miss his first smile (the one before his first operation) Please feel free to message me if you have any questions or just need to talk flowers

user1490100454 Mon 11-Sep-17 11:04:52

Thank you for your reply BlueIsTheNewBlue - we've came to terms with it now and we're just really excited to meet him. However the one thing that does concern me is how to talk to other people about his cleft and how to explain it properly. Family and friends for the most part know and partly understand, do you get comments from strangers about it?

BlueIsTheNewBlue Tue 12-Sep-17 09:42:18

Not as many as I expected to but I do live in a small town and whenever anyone asked about my pregnancy before he was born I explained about him having a Cleft, so that they were already expecting it. There were a few hurtful comments but I think they were more hurtful to me because I loved his smile so much and when someone commented about it being fixed it hurt alittle as part of me wanted to keep his first smile. But I also think some people don't know what to say in that kind of situation really.

But the surgery side of things is amazing. The most frequent comment I get now when I tell someone is "god I wouldn't of known"

I started a project just before his first surgery. I took a photo of his face everyday from the day of his first operation to when he was fully healed so then when I'm explaining things to him when he's older then he has something to look at too.

Sorry I've waffled on there blush

user1490100454 Tue 12-Sep-17 12:06:47

Thank you for your reply smile it was just what I needed to hear today.

I think how people word things upsets me too, especially my MIL who told me to prepare myself that he wouldn't look perfect when he came out and that he could be fixed. She's also made comments about how stitches and scars make her feel sick angry. I'm probably being over sensitive but it still stings, I just need to be strong for him ultimately.

I love your project it's very thoughtful I'm sure he'll love it, we may have to do something similar

BlueIsTheNewBlue Wed 13-Sep-17 14:26:47

I'm so sorry your MIL has said things like that, an I definitely don't think your being over sensitive about them comments. Especially over the scar comment because no matter what he will have a scar for the rest of his life and for her to say something like that I'm not surprised that it upset you. Maybe get your husband to have a little word with her and just explain how her comments upset you. She may very well not realise how what she's saying comes across. But he definitely will look perfect when he comes 😊

Have you been for your free 4d scan yet?

user1490100454 Thu 14-Sep-17 14:12:25

Yes we went for that the other day and it was amazing! I feel so much better after seeing him, I didn't see the cleft so much just my baby smile

It's put many of my worries to rest, on the MIL front I've decided to distance myself from her for a while

Thanks for your replies

LlGoulders Thu 26-Oct-17 20:30:32

Just wanted to say hello, I haven’t been on Mumsnet for 2 years since
my little boy was born but posted about clefts following my 20 week scan. My little boy is also nearly 2 and was born with a unilateral cleft lip. He had his op when he was 6 months and you can hardly see it now. His smile is fab but was fab before the op too!
I know it’s hard to imagine now but everything does work out and you do get through it!
Please let me know if you have any questions or want to chat as I didn’t know any other Mums with a cleft baby at the time and would have liked someone to talk to at the time xxxflowers

user1490100454 Sat 28-Oct-17 14:07:16

Hi - thanks smile I'm still surprised how common clefts actually are, I think I was blind to it before all of this.

How long did it take for your little boy to recover from his op? Did you struggle with feeding at all? I don't plan on Breast feeding anyway but this is something I've been worried about as he's looking to be really small on our scans we've had since. I'm keen to feed him up when he is eventually out!

LlGoulders Sat 28-Oct-17 21:24:23

I’m sure he’ll be fine, I chose not to breastfeed as I didn’t know how he would be and didn’t want the added pressure of trying to feed him myself, he was actually fine on normal bottles and teats but his cleft was quite small. I probably could have fed him myself but to be honest but wanted to make sure he had enough milk.
His op went fine and it was only the first night at the hospital when it was difficult but as soon as we got him home he was fine, we just made sure we kept on top of the painkillers so didn’t take long to get over it and heal at all, we were so pleased with the result.
As I said you wouldn’t even know it now, he has such a lovely smile even with the (very faint already) scar, it just makes his cheeky grin, he’s perfect!
Are you having regular scans then? We had one every 4 weeks I think just to keep an eye on him. I didn’t have any other tests done apart from on his heart (which was fine) so they wanted to keep an eye on his development.
I just hope talking about things help as I didn’t have anyone else to talk to about it apart from the cleft team but it would have been nice to talk to parents going through the same thing xx

user1490100454 Sun 29-Oct-17 10:39:22

Talking about his cleft and looking at many pictures of other babies with one has certainly helped, it's almost become normal to me now so I feel a lot less worried about his birth. It's really positive hearing stories such as yours and your little boys progress too.

I'm getting scanned every two weeks as now I'm 28 weeks they've spotted that he's really small, on the 5th centile so he may have to make an early exit which also adds to the stress! Hoping that once he's here it'll be more plain sailing! grin

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