I’m Sue.  I’m one of the psychologists in the Newcastle team, and I would just have to disagree with you about a lot of that if that’s okay.  It’s a question that I commonly ask to the parents when they come to the clinic.  I’ll say to them, “What experience have with cleft before, and do you know anybody that has been born with a cleft?”

If they don’t know anybody, I’ll say, “What difference does that make to you that you didn’t know? What would you like to know?” So, my experience is that people do often know something about it.  There have been things on the TV so they might have misconceptions, but I’m always surprised by how many people actually do know about cleft lip and palate.  When they take their baby out, they’ll have people come up to them and say, “Oh, such and such has got a baby like this, a baby who has a cleft as well.” So, their social experience isn’t always as negative as they might predict it to be.

Heather McClements:

Well, quite often, after a week or two, they will say, “Oh, the amount of people around that have got a cleft that I never knew about and the number of people that have got a cleft that I never knew about“ and the number of people that have stopped them in the supermarkets and everywhere, but before they’ve actually had that cleft child around, most of them are not really that aware of it until the baby’s here that they become so aware.  They look at the people at the shops and walking around and say, “They’ve had a cleft repair,” which they would have never done before.  It would have never have occurred to them to look at people as they shop and look at people that have had clefts.

I have a son who is 14.  He’s one of twins.  His brother is autistic.  He himself has a bilateral cleft palate.  He has moderate learning difficulties.  He has some ASD traits, and we have found out he’s dyslexic.  We have almost had to start again at the age of 14 because we have had so very little assessment down the education line fighting to keep speech therapy by his statement. We didn’t know exactly where he was at this time so we have spent a lot of money on private reports. 

We have been to the combine clinic at Addenbrooke’s as well but found that quite daunting. I think on reflection there, you have so many questions, but when you have so many people in front of you, as is now, it’s very difficult to actually discuss all the different concerns that you have.

We’ve looked on the internet.  We’ve typed up our bits and pieces, but we got there and haven’t got the answers that we needed.  So, I think in the future I agree that I actually passing those questions across to the team beforehand would be very helpful, and then, maybe some answers could be given to us that time around rather than to get there and the time is always limited as well.

There’s that situation, but as in getting the various assessments for Frasier we have been over to Gary Spittle.  We’ve seen Gilly Bird and her pediatric team which includes a speech therapist, and we’ve had a private independent report as well. What we are getting is different views and different thoughts and different therapies for each area so we’re actually now very confused.  One says one thing, and then one says the other.  You know, he isn’t dyspraxic.  He’s dyslexic.

So, we are confused there.  The county wanted to cut Frasier’s speech therapy to one down per half term, which is not appropriate, but my real question is at 14 years of age to grind on with speech therapy and try to get him to do it each day is not proactive. He needs something I feel which is more modern for him as in using an iPod, as in using a Bluetooth with headphones so that he is in an age that they’re going to help him mold in a way.

I’ve actually watched him in speech therapy, and it’s very hard for him.

Siobhan McMahon:

Hi.  Thank you.  Yeah, speech therapy can be very, very hard.  It can be a long process, and it can be really, really difficult to keep young children and people through that process.  I think that probably the only thing you can do is discuss that with the therapist that’s treating your child and try and find ways that will motivate him because you know him best.  You will have some ideas about the things that would help to motivate him and encourage him.

Is there any new technology out there, which there should be by now with children with clefts and speech problems?  Is there anything out there that we know?  I saw on the television the other day a gentleman.  He’d come down with Parkinson’s, and his speech was affected.  He wanted to speak at his daughter’s wedding so he was actually given headphones and something, don’t ask me what.  He could use an iPod, and it sorted it.

Now, I’m not saying that this could be the thing for clefts, but it’s the future.  It’s moving on.  It worked.  That’s what I’m looking to there.

Siobhan McMahon:

Yeah, there are all sorts of projects and things looking at technology and how we can use technology to help children and people.  The answer for individuals is sometimes quite hard to find.

It’s also very distressing to see this and watch it year in and year out but see very little evidence of moving forward, and, indeed, in many areas going backward.

Siobhan McMahon:

Yeah, and that’s very difficult for you.

We have a question online.  This one is about audiology and how it varies throughout the country.  It says, “Can you comment on the different hearing aids, and Ted, can you comment on the hearing aids and garments and things like that?”

Colm Madden:

We know that for children with cleft palates, they are very likely to have delivery problems.  The question that arises is how we should treat these children with glue ear hearing loss, and I think we’re moving away from an emphasis on doing grommets for these children because grommets by themselves are a more temporary measure, and we’re worried that the glue ear will come back and the children may need to have repeated sets of grommets.  The idea, really, is to try and improve the hearing until it comes to a time in a child’s life where the evidence getting clearer becomes less.

We’re moving now probably towards an idea in hearing aids.  The digital hearing aids we have available on the NHO, and I suppose that’s the main controversy and the main difficulty behind this.  We don’t know as to what is the best option for these children, but our problem is for some of these children that they may need to have repeated bits of grommets.  That by itself carries risks and carries side effects, and we are moving away from a trend inserting multiple sets of grommets, more towards observing the children, supporting them through these periods of glue ear and hoping that with time that the glue ear itself will resolve.

Just to follow up on that question the online audience, is that on your cleft team, or is that nationally, what’s happening?

Colm Madden:

I think that’s nationally a trend.  Our problem is we don’t have research that can ultimately decide which is the best way, but I think we’re getting to that sort of agreement that the best option for these children with hearing loss because of glue ear, which, again, is almost ubiquitous in children with cleft palate that the more that we intervene, particularly surgically, the more likely we are to have patients in the future.

Okay.  Thank you.

Just going back to the glue ear.  Our son’s with glue ear, and we’ve been on a watching brief so to speak.  Every 6 months, he’d have hearing tests.  He’d fail them in the winter, pass them in the summer, and it got to the point, this is like the Manchester team, a local ideology service.  They said before he was three.  Basically we were given the option.  You’ve got to kind of do something now because parents don’t come back.

So, we’ve had grommets since then, but no one actually ever said to us.  I think we’ve asked, but do these station tubes just get bigger as they grow and the glue ears subsides?  I’m still three years down the line. I  don’t know.

Colm Madden:

Well, there is going to be a maturation.  There is going to be improvement of these station tube function, and there is a general trend, as children get older, for these issues to go. It’s the same for all children once they have cleft palates or not.  It’s very rare for adults to get glue ear.  The reason for that being there’s a number of reasons.  It has to do with the immunity.  It has to do with the maturation of these station tubes.  It does change as the child’s head and face develop with time as you mature when the inside structures in your head get bigger.

In relation to the other point that you’re raising that parents wouldn’t cut back…

Yeah.  We were basically told that it’s time to do something now so we had the grommets, and it wasn’t a fabulous success.

Colm Madden:

Okay.  I find that, I’d be disappointed by that if somebody said that.  I think the issue really is to deal with hearing losses that’s affecting the child, but I don’t think there’s one prescription that you must have this done.  It’s really more of what you’re doing, following up the child, assessing the child, assessing how the hearing loss is affecting the child, how it’s affecting their speech, their education, all those issues, and sitting down with the parents and going through the options available and deciding which one is the best for their child.

I wonder if I would be allowed to make a few comments.  I’m an ear, nose, and throat surgeon and an imminent grandparent of a cleft child, and I just wanted to come back on the grommet thing a little bit because I’ve done a lot of grommets over the years one way or another.  There’s no doubt that the trend with grommets has gotten less and less and less, but that doesn’t mean that it doesn’t have a place. I think you have to be very careful about saying that grommets are out.

I think each child has to be judged on its merits because what happens to the middle ear into the Eustachian tube isn’t the same for every child.  There may be pathological changes that sort themselves out by the age of 7 or 8 in many children, and they wait and see and apply the grommets and put the hearing aid in.  That may be the appropriate course of action, but the pathology is a continuum. 

There may be other conditions that can be seen to be evolving in the middle ear, and to just say, “No, grommets are not appropriate there” is wrong. I think each case has to be judged on its merits and not to have a completely closed mind about ventilating the middle ear using grommets.

Colm Madden:

Yeah, I’d fully agree.  Again, it’s, as you were saying, a question of looking at the child, assessing the child, and sitting down with the parents and deciding what is the best option for the child.  Again, it can take a long time, and follow up with these children.

I have another very quick question from online.  A lady would like to know if there is any cream recommended to minimize scarring post-surgery and whether she can get those in the NHS or if they have to file for them.