# left cleft lip and palate



## Samia (May 14, 2007)

Hi there,

We've just had our 20w scan today and baby has a cleft in the upper lip and we are going back tomorrow to see if the palate has been affected.  I don't know why I'm writing this but I guess I wanted to know if the baby will have long lasting damage in any sort (apart from the scars) and also if palate surgery is needed does the child live a "normal" life...  Sorry this probably doesn't make any sense tonight as I'm still in a state of shock and don't know if I'm coming or going, sorry...  

Sam xx


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## Samia (May 14, 2007)

Been for another scan today with the specialist consultant and it's a left cleft lip with a cleft palate.  Still in shock but listening to doc and reading leaflets and online has helped and we are now meeting with the cleft team very soon.

Sam xx


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## emilycaitlin (Mar 7, 2006)

Hi,

I'm so sorry I didn't get replying earlier hun 

This has come as a big shock to you all, as it would to anyone, and you need time to let it all go in.  However, surgery has changed a lot in recent years, and children lead very normal lives following surgery, often without anyone else ever knowing there has ever been any poblems.  As a student nurse, I witnessed surgery on a cleft lip on a child, it is done with such precision, (it took an hour to draw where he was going to make the incisions), and if done at a young age, scars are barely noticeable.  Cleft palates, if opereated on, and speech therapy given, is not noticeable to people either.

As a newborn, there might be a couple of problems with feeding, but there are ways round them, which are easily solved.  If you are breast feeding, you will be given lots of assistance, and may need to express at first.  If you are bottle feeding, you can get special bottles and teats, the bottles are squeezable to help with feeding, as it can be difficult to get a good suction sometimes.

The cleft team will be able to give you more info and reassure you more, but it's not an insurmountable hurdle like it once was, and units are very much more aware of solutions to any issues that may arise,

Sorry again for the delay,

emilycaitlin xx


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## Samia (May 14, 2007)

Thanks a lot Emilycaitlin for all your valuable info    On the first scan on the monday Trisomy 13 was mentionned but not again on the tuesday when I went to the FMU and saw a consultant... told my mum about it (who I've got to say in my eyes is a bit ignorant  ) and since then my family's been on my case to have an amnioscentis (sp?) as they keep telling me than they read somewhere online that a hare lip is synonyme of T13!!  What I'd like to know is is the risk of having one of them?  I'm so lost right now and my family is no support whatsoever it's scary and I'm so angry with them    Thanks for all your hard work  

Sam xx


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## emilycaitlin (Mar 7, 2006)

Hi,

I'm so sorry you aren't getting the support that you need at this time.  The decision to have an amniocentesis is a very personal one, and you need to have a long talk with your consultant, and then time together to discuss it before making any decision.

I think what your family may have found is that most babies with trisomy13 have a cleft lip and palate, rather than babies with cleft lip and palate probably having trisomy 13. 

An amnio would search for any chromosomal abnormalities, I think there are around 50 or so that it searches for. However, it does carry a 1% risk of miscarriage, and so you need to decide whether you would act on any confirmation of an abnormality, in which case, it may be worth having one, if you wouldn't act, then you need to think about how much you need to know if there is a problem, as there could be a chance, if you had one, of miscarrying and then finding out that everything was ok.

It's a really hard decision to make, and there is no right or wrong answer.  Don't let anyone judge you on whichever decision you make, as it is not anyone else that is going through this.

It maight be helpful to see if your consultant can give you a figure on what the risk is of having trisomy13,  and then weighing that risk up against the risk of miscarriage from the amnio.

Let me know how you get on, and let me know if I can help any further,

emilycaitlin


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## Samia (May 14, 2007)

Thanks hun, the cleft nurse is coming round on wednesday so will discuss it further with her and see what else we can do as I'm really not keen on an amnio as I'm really scared of miscarrying and then finding out that everything is ok as you said..  Will definitely keep in touch thanks again   

Sam xx


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