Hi everyone

My son is 16 months old and has just had his 4th opertion to try and fix his clefts, he has had 1 one his lip and 3 on his palate his latest being on Thursday last week, been to scared to look in his mouth to see how it is doing but i did have a wee look today and there is another hole in the palate has anyone else had to go through so many operations to try and fix the palate?  I dont think i can let him go through any more operations it is killing me.

Hi Tricia,

I am so sorry to hear that you’re little man has had to go through so much in the last couple of months.  My daughter is 2 months old and was born with a cleft of the soft palate.  I am curious as to why he has had to go through so many surgeries?  Have the surgeons given you an explanation as to why the cleft keeps reopening?  On speaking to my cleft nurse initially she said there was a small risk of this happening and compared it to when a zip pops.  I am presuming it is just pulled too tight and stitches split is that right?  Sorry you’re all going through such a tough time and i hope you get things sorted soon.

Carly x

hiya im sorry 2 hear bout ur sons ops its a scary time at the best of times but 2 go through it 4 times i know the feelin my 4yr old son didnt have 3 failed palate repairs but they tried putting tubes down him 2 operate which they succeeded on the 3rd attempt wen he was 2 so he didnt have his repair til then.. i have a strong family history of cleft and as far as im aware there hasnt been a case of havin 2 have the palate done this many times so its just unlucky i guess i know there is a chance of the stitches splittin wen they’ve had the op as i was told so many times 2 look out 4 it but i have so much confidence in the surgeons as they do do a fantastic job and i now have a 7wk old girl who also has a cleft palate 2 and hopefully she wil have her repair at 9months the consultant has said 2 me that wat happened 2 my son is just 1 of those things and is unlikly 2 happen 2 my daughter but if it does i know they r good people and wil sort it out. i would just like 2 say dont b scared of ur son havin ops he wil b fine and i know its hard but have faith in the surgeons they wil sort things out and if the hole is small they mite not need do anythin or they mite wait til he talks 2 see how he gets on...where bouts r u from im from stoke if u need 2 talk or want advice drop me a line and i’ll see if i can help. take care.xx

Hi

Thanks very much for your message.  Sorry to hear about your cleft history, it really is hard times eh!

I totally have faith in the surgeon he has did a fantastic job on my sons lip if you look on the surgery photos Charlie Sneddon you really can barely see that he has had a cleft lip.  Its just a bit frustrating ecspecially when the surgeon was so confident that time that he thought it would stay in place and it hasnt, he has said tho that he might leave it and just see how the speech comes along. 

It really has just been unfortunate for Charlie i think, the first op was a big one for the full palate repair which almost certainly theres going to be a break in the stitches, 2nd time after the op he got a throat infection which they are pretty sure was the cause of the wound opening again but the third time theres just know reason, there is still a lot of healing to be done in the palate it has only been 2 weeks so theres a very good chance it could shrink down a good bit.  Just a waiting game.

Im from Scotland all Charlies ops have done in Yorkhill Hopsital.

I hope all goes well for your little girl

hiya thanx 4 ur reply ive seen ur sons pics he is a gorgeous little man and i cant believe how alert he was an hr after an op. and the 1 wiv him on a swing u would never know he had a cleft lip..hopefully wiv it only bein a few wks since his last op the little hole wil shrink i wil keep my fingers crossed 4 u. i will keep u informed of my daughters op and wen she wil b havin them.xxx