Further tests following cleft lip diagnosis

[LouLouCheese]

Hi,

We were told on Friday at our 20 week scan that our son has a small cleft lip. No other problems showed up.

We had a further scan with a consultant yesterday who confirmed small cleft lip no sign of cleft palate or any other problems but he dropped the bombshell of them wanting to do an amino and fetal heart check to rule out any further problems that weren't picked up on the scan.

It seemed quite routine to me but has anyone had any similar experiences? I just feel really stressed out about it all

[KittyandTeal]

I don't have experience with a cleft lip but I do have experience of associated issues being picked up at 20weeks scan.

My dd2 had T18, one of the chromosomal issues that cleft lip and palate are associated with. Although she didn't have either it was fairly easy for the sonographer to pick up the other soft markers like heart and brain defects.

What I'm trying to say is that if they have found a cleft lip and have had a good look for other soft markers but not found any I'd be very surprised if there are other issues.

We also had issues with our 12 week bloods, which I'm guessing they've looked at with you as well.

I hope this has come across right. I'm sure if there were other issues they would have picked them up, I imagine the heart scan and amnio are all precautionary.

[Emberf]

Hello,

My little boy was born with a cleft lip and palate. We too were offered the amnio and detailed scan, it's a standard precaution in most areas as there are lots of issues that can be associated with cleft lip and palate but mostly aren't.

You don't need to take them up on their offer of the amnio if you read through the risks and decide it just doesn't feel right for you, I know a lot of people who haven't. We decided to because we wanted to feel the most prepared we could be for whatever was ahead of us.

CLAPA, who are the cleft lip and palate association have a Facebook group you can join which is fairly busy if you wanted to talk to people who are going through the same as you or have been there. Good luck with everything- I know it must all feel so daunting now. I will say it got a lot easier for me once my little one was physically infront of me, it's haft to imagine how you'll feel and cope until baby arrives, or that's what I found anyway.

[Emberf]

haft=hard! No idea where the word haft came from

[gingerbreadmam]

i had abnormalities discovered at my 20 week scan. Mine was a slight curve in the spine, an underdeveloped femur, missing fibular and bilateral club feet. They straight away thought it was just one of those things but booked me in for an amnio to rule out trisomies and chromosomal issues. I did my research at home between scan and amnio as I had recently had an mmc and was petrified of the mc risk but eventually decided for peace of mind it was worth it.

Luckily nothing came back from the amnio and I am glad I had it. It's not quite as scary as you build it up to be in your mind. I had a good 2 1/2 days in bed afterwards to ensure things would be ok and 2 weeks have passed now and feeling baby lots so i'm assuming I am out of the woods.

Like emberf, I think with something physical you do start wondering what is it going to be like once baby is here but I imagine everything just melts away once you see how perfect baby is!

[LouLouCheese]

Thanks for all of your responses. Really appreciate it, I am feeling a lot better about it all now I've calmed down and had time to think and do some research and have the heart echo and amino booked in for this week (echo first), will let you know how it goes.

[gingerbreadmam]

will be thinking of you lou make sure you take plenty of time to rest after amnio and have someone running around on you.

if you have any questions about amnio feel free to ask.

[SaggyAndLucy]

my daughter has DS and was born with a serious heart defect, a complete AVSD. This is 2 holes, one top to bottom one left to right. There was pretty much nothing inside her heart except one large valve and all the blood was swirling about wildly.
She was reasonably well at birth and spent 12 weeks taking medication to help her through until she had open heart surgery at Great Ormond Street.
The op went perfectly and she has gone from strength to strength. Her heart is fine and considering she spent the first 3 months of her life pretty much in limp mode she is 15 months now and we'll up with her non DS peers.
And believe me, AVSD was nothing compared to what some of the little people in GOSH were dealing with.
A heart condition doesn't have to be the end of the world.

[elliejjtiny]

Hi, my DS4 was born with a severe cleft lip, palate and gum notch, diagnosed at the 20 week scan. He also has hydrocephalus which was diagnosed when he was born. He's 2 now. We had a detailed scan done by the consultant but not an amnio. Not sure if we were offered one and declined or if we weren't offered one. We also had a free 4D scan which was lovely for us and also our other 3 boys to see what he would look like.

[Ledkr]

My little girl was born with an undiagnosed cleft palate.
What scared us was the mebtion of "other defects" such as heart etc.
the cleft nurse said that is very rare and was a bit u sure as to whether they had needed to worry us with it.
She is 4 now, repair was done at 9 months.
The cleft team are just amazing, I cannot believe the support we get.
They also do lots of fun events and the Christmas party is lovely.
Pm me if you want to ask anything.

[elliejjtiny]

Waves at Ledkr I remember you replying on a post I'd written asking about cleft lips when my DS4 was first diagnosed. Seems like forever ago now.

[ajandjjmum]

My cleft baby is 23 years old now! We were one of the lucky ones where the cleft was found on scan back in the day - at at the time they said that they had checked for any anomalies, but it seemed isolated.

Tonight he's been showing his new girlfriend photos of before he had his lip op at 10 weeks - it was pretty wide although unilateral, with cleft palate and gum. He's had lots of operations, but is a good looking lad, beginning a career in the city, with lots of friends and confidence!

I'm sure everything will be fine with your little one LouLou - hope they give you as much joy as DS has given us.

[Ledkr]

ellie it flies by doesn't it?

Mn helped me so much when ds was born, it meant so much getting the replies and reassurance.

My Dd starts school in sept a happy bright beautiful confident chlld that we all adore.
We feel privledged to have been given her.