Any mummies with cleft lip & palate babies?

[TaNasha]

Hi everyone,

I just stumbled upon this thread even though it is quite old!

We found out at our 20 week scan that our baby girl has a cleft lip. I dont know the proper name for it, but its on the left side.

I also thought there woudl be more mummies with clefties?

 

[Celtic Dragon]

Not sure where you're based, but in the UK (I'm in the South West region), the support has been great. We've had a slight delay to surgery as one of the surgeons moved away, but the cleft team have been fab. Hope you have a positive experience too. By the way, we think Rowan's lip is cute and definitely makes him distinctive - we've never had any negative looks or comments.

Good luck!

 

[helloeveryone]

hi thought i would stop by my baby is due in 5 weeks we know baby has got a cleft lip and gum they have had a look at the palate and have said they think it is OK but we will see when baby is born.....Looking forward for the birth as we don't know if it is a boy or girl but a little bit scared about feeling sad about baby having cleft lip and palate...

I feel fine about it now but i rearly want to breastfeed so i know i won't be able to if palate is affected...

Anyway all you mums and dads with clefts babys keep stopping by here it's nice to know i am not alone....xxx

 

[TaNasha]

Hi helloeveryone!

My baby is due in 8 weeks! I also have the same fears! I am trying to prepare as much as possible forthe birth, but I cant help being scared that I might be shocked when I 1st see her.

Where are you from?

 

[helloeveryone]

I live in uk in hertfordshire and my baby will be getting surgery done in cambridge..not long now till will have are babys.... i noticed you are having a girl is it your 1st??,,,have you had a 4d scan done.? ...

mine has helped me to see it looks a small cleft so hopfully i won't be to shocked.xx

 

[TaNasha]

Yes its our 1st and a girl! We are very excited- but scared at the same time! Is this your 1st?

We had a 4D scan at 24 weeks but she was laying with her "good side" towards us, so we couldnt see the cleft properly, but we get to go back on Monday, so hopefully we will be able to see more then.

They also told us it is a small cleft on the left side, it was 4mm at 24 weeks. They also could not tell us if it was the palate aswell, but told us to prepare ourselves that it would be.

We are still waiting for an appointment with the cleft team, i still have no idea if we still need to arrange anything special before she comes?

 

[helloeveryone]

Yes its our 1st and a girl! We are very excited- but scared at the same time! Is this your 1st?

We had a 4D scan at 24 weeks but she was laying with her "good side" towards us, so we couldnt see the cleft properly, but we get to go back on Monday, so hopefully we will be able to see more then.

They also told us it is a small cleft on the left side, it was 4mm at 24 weeks. They also could not tell us if it was the palate aswell, but told us to prepare ourselves that it would be.

We are still waiting for an appointment with the cleft team, i still have no idea if we still need to arrange anything special before she comes?

Hi no it is not my 1st i have 5 children already so this one makes 6....
none of my others have had a cleft so it was a surprise,, glad to see your babys cleft lip is 4mm (they think mine is about 6mm..) when they did my 4d scan they scaned the babys face then reversed the picture to see behind the face.. I think it is called a 3d reverse face scan.. anyway once they done that they told us that the palate is not affected ( but there is a chance is it..)
Anyway hope your scan goes well keep me updated.. I' m going away for the weekend .But i'll pop by when i get back..xx

 

[mrsa88]

Hi ladies, I've just stumbled upon this thread and wondering if I could ask your advice, we knew at 20weeks our little girl was going to have a unilateral cleft lip and palate and she is now 9days old. We are getting to grips well with feeding but struggling to get a reasonable amount down her but she has gained weight so it must be much of an issue for her but our main problem is wind, it takes ages to get it up and we are using infacol but I can't really see much difference yet, have any of you mums found anything that works really well?

I am finding it quite hard fo cope with her crying at the moment but think its just cause she has wind and I can't get it up for her, I know if will get better and I've got amazing support but hubby is back to work on Monday and I'm dreading it!

Thanks

 

[TaNasha]

Yes its our 1st and a girl! We are very excited- but scared at the same time! Is this your 1st?

We had a 4D scan at 24 weeks but she was laying with her "good side" towards us, so we couldnt see the cleft properly, but we get to go back on Monday, so hopefully we will be able to see more then.

They also told us it is a small cleft on the left side, it was 4mm at 24 weeks. They also could not tell us if it was the palate aswell, but told us to prepare ourselves that it would be.

We are still waiting for an appointment with the cleft team, i still have no idea if we still need to arrange anything special before she comes?

Hi no it is not my 1st i have 5 children already so this one makes 6....
none of my others have had a cleft so it was a surprise,, glad to see your babys cleft lip is 4mm (they think mine is about 6mm..) when they did my 4d scan they scaned the babys face then reversed the picture to see behind the face.. I think it is called a 3d reverse face scan.. anyway once they done that they told us that the palate is not affected ( but there is a chance is it..)
Anyway hope your scan goes well keep me updated.. I' m going away for the weekend .But i'll pop by when i get back..xx

wow 6 kids! you must be busy! are they boys/girls?

I am so excited for our 4D scan tomorrow!

 

[TaNasha]

Hi ladies, I've just stumbled upon this thread and wondering if I could ask your advice, we knew at 20weeks our little girl was going to have a unilateral cleft lip and palate and she is now 9days old. We are getting to grips well with feeding but struggling to get a reasonable amount down her but she has gained weight so it must be much of an issue for her but our main problem is wind, it takes ages to get it up and we are using infacol but I can't really see much difference yet, have any of you mums found anything that works really well?

I am finding it quite hard fo cope with her crying at the moment but think its just cause she has wind and I can't get it up for her, I know if will get better and I've got amazing support but hubby is back to work on Monday and I'm dreading it!

Thanks

Hi mrsa88, welcome!

Sorry i dont have any info on wind! I think this is a problem that lots of other babies also have! hope things get better for you!

What was it like for you when she was born and you saw her for the 1st time? Was it like you expected?

 

[mrsa88]

Hi ladies, I've just stumbled upon this thread and wondering if I could ask your advice, we knew at 20weeks our little girl was going to have a unilateral cleft lip and palate and she is now 9days old. We are getting to grips well with feeding but struggling to get a reasonable amount down her but she has gained weight so it must be much of an issue for her but our main problem is wind, it takes ages to get it up and we are using infacol but I can't really see much difference yet, have any of you mums found anything that works really well?

I am finding it quite hard fo cope with her crying at the moment but think its just cause she has wind and I can't get it up for her, I know if will get better and I've got amazing support but hubby is back to work on Monday and I'm dreading it!

Thanks

Hi mrsa88, welcome!

Sorry i dont have any info on wind! I think this is a problem that lots of other babies also have! hope things get better for you!

What was it like for you when she was born and you saw her for the 1st time? Was it like you expected?

Thanks, we've been trying infacol and have just got some granules you can use to get wind up so hopefully something will make it much easier.

we had the 3d scan and sort of knew what was coming but i was very nervous to see her for the first time but as soon as she was placed on me all i could see were her big eyes and chubby cheeks and didnt even notice her cleft, its only today with her being 2weeks old I have looked inside her mouth for the first time properly to have a look at her cleft palate and its still something that i dont notice.

We have her first outpatients appointment booked for the 9th June and fingers crossed we will get a date for her lip op, not looking forward to surgery as i love her to pieces the way she is now and cant imagine her lip being "normal" and from when we were diagnosed with it at 20weeks i would never have dreamt of being able to say that!

 

[helloeveryone]

Yes its our 1st and a girl! We are very excited- but scared at the same time! Is this your 1st?

We had a 4D scan at 24 weeks but she was laying with her "good side" towards us, so we couldnt see the cleft properly, but we get to go back on Monday, so hopefully we will be able to see more then.

They also told us it is a small cleft on the left side, it was 4mm at 24 weeks. They also could not tell us if it was the palate aswell, but told us to prepare ourselves that it would be.

We are still waiting for an appointment with the cleft team, i still have no idea if we still need to arrange anything special before she comes?

Hi no it is not my 1st i have 5 children already so this one makes 6....
none of my others have had a cleft so it was a surprise,, glad to see your babys cleft lip is 4mm (they think mine is about 6mm..) when they did my 4d scan they scaned the babys face then reversed the picture to see behind the face.. I think it is called a 3d reverse face scan.. anyway once they done that they told us that the palate is not affected ( but there is a chance is it..)
Anyway hope your scan goes well keep me updated.. I' m going away for the weekend .But i'll pop by when i get back..xx

wow 6 kids! you must be busy! are they boys/girls?

I am so excited for our 4D scan tomorrow!

Hi again, yes i am very busy, soon be even more busy when baby pops out.. I have 3 girls and 2 boys....
How did your 4D scan go..did you get some good pictures and find any more out...Hope it went well xx

 

[helloeveryone]

HI mrsa88 Glad you found this thread.. congratulations on the birth of your baby hope things are goind better with you with your babys crying/wind problem...and it's good to hear that you did'nt notice your son cleft and got used to it quickly..my baby is due in 4 weeks and i'm so excited nearly ready now..xx anyway better go got kids to get ready for school

keep in touch, and let us know how you are doing xx