Suspected midline cleft lip and palete on 20 week scan

[evaangel]

Any info would be greatly appreciated..? TIA

[evaangel]

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[MissTinaTeaspoon]

Hello.

Can I firstly recommend the CLAPA website? There's loads of information on there.

As a student I worked on a surgical ward where they carried out the operations to repair the clefts. The lip is usually done at around 4 months and the palate at 12-18 months. Some children will require surgery later on as well depending on the severity. The babies usually recover fairly quickly and heal well.

Feeding may or may not be a problem at birth, but if you are bottle feeding there are lots of different bottles and teats to try, and you should see a nurse specialist shortly after birth to help you with breast or bottle feeding. Some babies with a severe cleft may need tube feeding at first but lots don't.

Have you been given any information from your hospital? There should be someone there you can talk to, if not have a chat with your midwife. Have they offered you any further tests at all? In rare cases clefts can be associated with other problems, but as I said that's rare.

Good luck, and hopefully someone who's been through this will be along soon.

[evaangel]

Thankyou Miss...I am expecting a phone call today from the hospital for further scans and investigations and a date for a further scan.

We have had 2 cases of this down my family line, a, second cousin and my brother. Somehow the sonographer was interested in the genetic side of this. I have 3 other children without this condition.

I have googled this and it seems that the info tells me between 6- 10 weeks pg the bone doesnt fuse..is that correct?

[MissTinaTeaspoon]

I'm not sure about when it happens bug I know it's early. Did your relatives have any associated problems? If not then your baby will most likely be the same. Maybe that's why the sonographer was asking about them?

Good luck with the next scan, as I said CLAPA are a great source of information and support. Where I work we have a nurse specialist who visits the newborns in hospital to give support and information too, I would imagine that that's fairly standard.

[evaangel]

Yes my brother died at 16 days old but also had heart defects and abnormailties of the left hand, the sonographer checked everything else and said heart and limbs are growing fine and the brain is also fine.

Thx again for your info...I will go on this website!

I believe there is an excellent care and follow up plan for babies born with this and it is treatable in the long run and over time!!

[boohoohoo]

Hi, my ds was born with a cleft palate, doctors now think that clefts are genetic, however neither my dh or myself know anyone in our families who had one. If you baby has a cleft you'll have a specialist nurse assigned and the cleft services team in your area will arrange to see you. CLAPA is great and have lots of information. The lip is repaired early on and the palate at about 8 months, don't worry there is lots of support out there. PM me if you want to know anything else or just want a chat.

Ps there are quite a few mums with babies who had/have clefts here and woman themselves, sure they'll be on here soon.

[ajandjjmum]

DS was diagnosed with a unilateral cleft lip and palate at 32 weeks - 19 years ago. It's a dreadful time and my heart goes out to you.

You'll be swimming in information for a while, and just need to digest it bit by bit. They were very keen on checking out DS for other 'syndromes' but fortunately that was clear and it was just an isolated incident, although various members of DH's family also have a cleft.

DS is now studying Physics at uni and is the best son anyone could wish for. We shed many tears in those early few weeks, but it's all just made us realise how precious he is - and I serious believe that the experiences that he's had have helped make him the person he is today.

Have you been referred to a consultant yet, or is it too early?

Take care of yourself.

[evaangel]

Thx everyone...got the scan date and I have been reffered to the FMU, the scan is on Monday...a bit worried as I dont know what to expect.. I am having a little girl.

Do they offer you an amniocetesis aswell?

I dont really want that if I am honest...DP and I opted out of the tests as we thought what ever life throws at us , everything will be ok and we will be strong about it .

Take care and I will keep you up dated x

[pipsy76]

My DS was born with a cleft lip in 2006 which was not picked up on the scan. The cleft nurse arrived the day after he was born and he was straight in the system with surgery at 8 weeks, everyone looks shocked when I tell them my now 5 yr old son was born with a cleft lip as it really is not noticable following the excellent surgery. I exclusively BF him as well although his palate was not affected. Best wishes.

[boohoohoo]

Eva, everything will be ok, try not to worry too much (I know that sounds impossible at the moment), my cleft nurse specialist said to us when she first met us 'it's nothing that can't be fixed' lovely words to hear at the time, believe me.

Take care x

[MissTinaTeaspoon]

I'm sorry to hear about your brother eva. I would imagine that at your appointment they will scan you and you will see a fetal medicine consultant, you may be offered an amnio but you don't have to have one, do whatever feels right for you. The fact that her limbs are growing well and her heart looks good is all positive

Good luck for Monday and keep us posted!

[evaangel]

thx for your kind words everyone...scan is later on today...I will keep you posted x

[Mum2be79]

More common than you think - and quite 'correctable' too!

I'm 32 and only found out a year and a half ago that I came under a sub-category of 'cleft palete. It was discovered following an operation for a deviated septum, reduction of the inferior turbinate and nasal polyp removal. For years I had been suffering from a blocked nose and thought it was 'just me' until a colleague had similar problems and sought help for it. My problem made me hyponasal (or hypernasal, I get them mixed up!) which was a sod when trying to teach phonics as some sounds I could not make.

After the operation, I sais I was able to nose breath standing or sitting but not lying down. On investigation, the consultant found that my soft palete was not symmetrical and not working to block off air to make certain sounds very well. This now made me the opposite of hyponasal (or hypernasal!!!). It was also found that my hard palete was called a 'catherdral arch' which meant my jaw was narrow -hence the reason for overcrowded teeth as a child!!! He told me that it came under the sub category of cleft palete as I had been literally borderline for the 'traitional' cleft palate that we all associate the condition with. This made me a bit cross as I had gone so many years (and had surgery for my adenoids to be removed) and no-one mentioned it!!! I had some speech therapy but I soon stopped that when I was missing 1 day a week of work every 3 weeks to 'correct' something that I had managed to live with for 31 years and everyone I knew said they hadn't noticed so therefore I thought 'what is the point'?

I had a friend (he's now 36) who was born with a hare lip and cleft palete and even all those years back, it was corrected successfully. I had known him 2 YEARS before I even noticed and only because we were talking about scars and I asked him about the small one on his lip! He's never had a problem in his entire life with it!

Try not to worry. He/She will recover well and lead a perfectly normal life.