Cleft Palette

[Janbo25]

My sister had a lovely baby girl on saturday however, however since then the baby hasn't been well and developed a temperature and is being treated for an infection, since birth she also hasn't been feeding well at all which resulted in them having to place a feeding tube down through her nose. They have today realisied that the she's got a cleft palettewhich is quite a quite substantial therefore she is unable to feed at all without the tube. They are now awaiting the specialist to come from the nearby children's hospital to ascess her, as anyone got any advice both for my sister on how to cope and also what is likely to happen to the baby now??

They can generally operate very early on in babyhood.

My brother was born with a hare lip and cleft palate some 30 odd years ago. his operatoins were done over several, and spanning years. His last one was when he wa sin his early 20s. This procedure happens far sooner now and, as a result, far fewer ops are required.

CLAPA - The Cleft Lip and Palate Association. There is a lot of information and support lines on this site, and also FAQs on feeding and surgery.

NHS Direct information for you, Janbo.

I think it can be mended to an extent fairly early on - depending on the degree of cleft. She may have to go on being tube fed until that's done as she won't be able to suck properly.

Good luck to your sister and the baby (and you!)

Information about feeding here from hula's link. It says special bottles and teats are available from CLAPA.

Yous sister will probably be given this information soon anyway.

Many thanks although i think i have worried myself more now because it says:

There are a number of other situations where cleft lip and palate occurs in association with other birth defects. These are more common in cases where cleft palate occurs without cleft lip, and it is important that any cleft palate baby is thoroughly examined for other birth defects.

And she's been born with just the cleft palate.any advice?

At the moment we're not sure whether the bottles are going to be any good either because the cleft palate is so far back. the cleft is also causing her sats to drop which is worrying

Sorry, Janbo, I don't know anything about possible further problems - I guess when the paediatric specialist comes that's something they will look for. Fingers crossed that it is just the palate.

Your poor sister, she must be really worried. I hope she has some answers soon. She could probably express breastmilk and tubefeed with that if she is advised that is okay to do. Good luck, we will be thinking of you. xxxx

Janbo - my brother has a hare lip and cleft palate, but has/had no other medical probelms associated at all. He had to have some speach therapy as a child, but it hasn't held him back at all. He has been very successful. He went to college, went to uni - got a first class degree and now has a very successful career in some form of engineering. It is perfectly possible for the baby to have no other medical probelms, I promise!

hiya, congratulations on your little dn and what a lovely aunty she has!!

i was born with a cleft palate only and had it repaired as a young baby(this was 1970!!)and until i had my op i struggled to put on weight and was a little late reaching baby milestones but by the time i started pre-school i was just the same as any other child.
i also had a heart defect which again was repaired as a young baby and have no real ongoing concerns with it but the medical profession always keep a closer eye if i do feel under the weather(iyswim)eg:when pregnant!!

my mum fed me with a sheep's teat?? as it was the best way for me but i don't know what the procedure is nowadays...please look at the clapa website(we were originally members!!)

if you need to talk just shout!!