Cleft palate and hearing problems

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My 2 yr old DS was born with cleft palate (any other cleft palate mums on here please get in touch) which has been repaired successfully, however he has six month hearing tests the last has shown high and low hearing loss, which implies glue ear, we are awaiting ENT specialist. He also has speech probs, we can understand him but know one else seems to, he misses so many sounds in most words.

Anyway wonder if any else has come across this, as we have been told (by cleft team) that grommits are not always the answer for a child born with a cleft, and that hearing aids might be better whilst they are a young child. DS did have problems coming out of anisthetic and obviously we are not really keen to go down that route again, he also loves swimming and i understand grommits are not great with that?

Any advice welcome, many thanks

Hi - sorry I've no real advice but I have two friends whose children both had grommits fitted only for them to fall out a couple of days later! I'm not sure how common this is but worth asking about esp if you aren't keen on another anaesthetic for your ds!

My ds does't have a cleft palate but we have just started seeing the cleft palate team at gosh. They think something is wrong but don't know what yet.

We have seen audiology since he was born and they have been really reluctant to put in grommets and they gave him a hearing aid in the summer not really sure how much it worked but he talked louder which made his speech clearer but typically the glue ear has gone now so he is not wearing it. Also seen ent who wanted to take out adenoids and tonsils and put in grommets if needed. He has speech problems to and awaiting more therapy.

Why don't you try the hearing aid first and see how it goes.

Sorry I haven't really any advice but thought I would share my experience. x

My DS2 was born with complete cleft of lip and palate. He was found to have hearing problems at the age of about two and had the grommits fitted. The ENT surgeon noted that glue ear was very common in children born with cleft. His hearing did improve with the grommits and he went swimming every week. There were regular checks and about a year later the grommits were found to have fallen out but by that stage they had done their job and there was no question of having other grommits put in place. He is 6 now. My son has other complex difficulties and the cleft is really down at the bottom of our list of priorities for him, but I am happy to answer any other queries - not sure how helpful but I will have a go!!

Hi, no experience of clefts. Dd3 is deaf and also has glue ear, she's had 1 set of grommets mainly so we could figure out what her underlying hearing loss was. You are not supposed to get water in the ear when you have grommets, that includes bath time, but you can get a set of swim moulds made at the hospital for swimming or there are headbands you can buy too, so it doesn't have to stop the fun activities.

Hearing aids will not give you normal hearing but of course are non invasive which is a huge plus It's not an either or situation, so there's no reason why you can't try hearing aids for now and if it doesn't work try grommets later. Does your ds get speech therapy? If not I'd suggest a trip to the gp for a referral, waiting lists can be long.

oh and just in case you haven't found them yet, there is the ndcs which has loads of parent friendly info on hearing issues.

Thanks for advice, much appreciated, yes we have speech therapists in January and another hearing test before that in early Jan, there is accumulation of fluid in one ear and they just want to check other ear again before ENT. We are now accepting that there is a slight prob cos he shouts and is incrediably loud, and although has words, they are not clear at all and he misses sounds off the majority of words, or mis pronouces them completely. Its just that i`ve been told that glue ear is an ongoing problem with children who were born with a cleft, so want to get as much information as possible before seeing the ENT.

Hi,
My daughter has cleft palate and has some associated hearing loss, but so far it has not been severe enough to warrant grommets or aids. I a member of the cleft forum Face Forward and there have been a lot of children in the group trying aids rather than grommets with a lot of success. Its a really friendly group if you want to ask others about it. Personally hearing aids would be my first choice - it has got to be worth a try to avoid a general. There is also a guideline on the 'NICE' website about glue ear if you really want to read up here. Hope that helps...

Thank you Boboma, going to have a look on both websites today

Missed this, sorry. I have a 7 year old dd born with Cleft Palate, she had hearing loss and particularly at about 6 months became very quiet - apparently an indicator her hearing had dropped further. At the time she had her repair surgery it was normal here to have grommits, we declined them as older dd had problems with them, not prepared to go in to the details but for us this procedure was not an option. Cleft team very supportive, hearing now normal (did have brief hearing aids), since she was about 6, and she has been signed off audiology - consultant commented at our last meeting that we'd been right not to bother with the grommits (obviously this was based on dd's condition). still has speech problems, which I think she would have had regardless, but we are working on it. I would go with your gut feeling, it doesn't sound as if there is a persistant hearing loss if results go up and down so maybe speak more to the team about the options, maybe you could trial hearing aids and see how he gets on - then you could use them when the glueear is a problem but take them out when hearing is good, that is what we did - dd asked for hers when she needed them. And is your dc not seeing speech therapist yet? Our dd has had one allocated since birth, cleft speech therapy is very specialised, ours is on mat leave at moment so we have another lady who is an experienced therapist but not with clefts - but she is learning fast! I thought they came as part of the cleft team, along with the audiologisy, psycologist, orthodontist, plastic surgeon, specialist nurse, pediatrician (and anyone else who happens to be about with an interest!) hope it works out