Hi all, I am a newbie.

Our baby has just been diagnosed with a cleft lip and possible cleft palate at our 20 week scan. The news has come as a shock and we are dealing with it and this site looks like a fantastic help.

The biggest shock we had was when the consultant started talking about possible terminations of the baby as a child with a cleft lip/palate apparantely has a 3-5% chance of other genetic defects.

The conversation came as a shock to us both, the consultant has offered an amiocentisis to try and detect or eliminate the possibility of birth defect.

So we have a decision as to whether we opt for this. Obviously this is a very important decision that we need to make as a family.

If anyone could offer any thoughts or any advice from going through the same thing it would be much appreciated, as our heads are all over the place at the moment.

Ryan

Dear Both
Im sorry to hear your news it is a real shock and difficult to come to terms with - but the more you read and look you will find its actually quite common and many parent and babies go through this. 

2 weeks ago the exact same thing happened to me. I live in Dubai and the Sonographer told me i had a few more weeks to make a decision on termination and i better be quick (and went on to imply i was to blame for this “condition") since then there have been lots of tears as well as investigating and getting some excellent advice both in Dubai and the UK. I went and had an Amnio done as if anything else was wrong apart from the cleft lip and palate we would have probably changed the course of my pregnancy.  There is a risk associated with Amnio but like my Obstetrician said to me “if you are going to worry your whole pregnany and not enjoy it - have it done” plus as you go along it is less risky. Im glad i did.  We waited for the quick “fish” test results to come back anxiously and luckily they were negative for anything else that may have been associated with Cleft - which ruled out termination for us for sure. 

We were both so releived as now i have read so much on cleft palate and lip as well as had great conversations with the cleft team at South Thames Cleft Service we will be flying home and delivering our son at St Thomas’ and he will be reffered to the Evelina Hospital (all being well with my acceptances!) It really is so fixable and they offer such good support - just remember it may be a little heartache to watch him or her go for op’s but it will be worth it and when they are so little they dont know any different anyway....speak to the cleft team closest to you (you can get the team info on Clapa) and they will put your mind at rest.  It is just cosmetic not developmental or mental illness - remember that and enjoy him or her x

Hi Ryan and Liz,

We also found out our baby has clefts at the 20 week scan, in our case a bilateral cleft lip and palate. My due date is tomorrow and since finding out and up til now we have been through many emotions. Like yourselves, we were shocked, and I thought my world had crumbled around me. That was until we looked into what it actually is and what treatment is available. The 4d scan we were offered after diagnosis really helped us to bond again and now I just cant wait to meet the little man. We opted against any further tests as nothing we could be told would make us consider a termination. But that is our decision and each persons situation is their own.

Lell