Fran (who has given me permission to write this latest twist in her cleft care on the blog) had a routine trip to the ENT department this week. She was referred by her Cleft team surgeon and speech therapist, who were concerned by her hoarse voice, which has developed over the last year or so.
If you are recent reader of the blog, you might not know much about Fran’s cleft lip and palate, since these days it has become almost background noise. It seems amazing that it might be so really – once upon a time it seemed so very all encompassing and huge. It isn’t just bigger events since that has altered that. A hole in your babies face might seem massive on the days around the birth, but it is remarkable how quickly it just becomes ‘life’ and ‘that child’. I wish you could be injected with a dose of understanding that on the day it happens. There are pages of entries about it on this blog; I really ought to collect them together. The old MuddlePuddle page really is VERY old now (and it need of having it’s photos put back too).
Aside from 2 bone graft operations, things have been quiet anyway in recent years. After 6 or so operations in 5 years, things tailed off. Her speech continues to be variable at times and her orthodontic work is slow to start because they don’t like to start until all the adult teeth are through and she is taking AGES to shed molars! What she has been struggling with is a hissing sound, which I only really notice when she is speaking with other kids or if she has a cold. Unfortunately though, this has turned out to be caused mostly by a gap which has stretched between her soft palate and the back of her throat. Unlike normally formed mouths, her repaired one cannot quite close off the seal at the back, meaning that no matter how hard she tries, air will always escape down her nose when she speaks. And as is true with a sore ankle or a bad back, compensating for this as best she can is having knock of effects in other places.
You may or may not be interested in this but Fran’s cleft was a little like this – I borrowed the image from this excellent website.
Cleft children also suffer with repeated ear problems. Their tubes from throat to ear tend to be small and compressed and the repaired muscles don’t work that effectively sometimes. We use our soft palate to clear our ears (that pressure suck/click we can do) but we rely on the muscles which are strung across that part. A cleft child has them accidentally from front to back and they have to be unpicked and stitched together. Inevitably, they are not quite so effective. Fran has had repeated ear infections through her childhood and there has been an increase in them recently.
Her appointment was an awful lot more traumatic than expected. They took pictures of her eardrums which showed a build up of fluid behind one ear and then, to her horror, they put anaesthetic into her nose and put a camera down it and into her mouth. I had no idea this was going to happen and it was all a bit unexpected, though they were very nice to her. She is an extremely brave girl as a rule, but the surprise of it all really undid her. Then it was off for a hearing test – and it surprised no one to discover that the ear with fluid, which has been causing pain, is 15% down in hearing too.
The result of that is that if it doesn’t settle in 3 months, she’ll need an operation for a grommet to be inserted and relieve the pressure building up. It’s a long time since she’s had those, but it is a low key op, although another GA, which I hate her having to have.
From her point of view the other discovery was much worse. She has developed a nodule on her vocal chords, mostly from trying to self correct her speech and partly from straining it from singing. She’s straining mostly, it seems, because her vocal chords have become stiff and that appears to be because they are suffering from acid damage – a left over result of the baby reflux she had which it appears is still troubling her. So she has a course of antacids to take which will hopefully solve that, allow the chords to relax and soften AND she has to stop singing totally for 3 months and really for 6 months. And the main irritation (aside from that she loves to sing, has a show to prepare and is gutted) is that is would all be easily sorted with vocal training – but in our area there is only funding for adults to get that from the NHS 🙁
All in all, it was a tough morning for her. Long term, she’ll be better off of course and will get her ears and voice back. With rest, the nodule should be recovering well in a couple of months and we may try to get her singing lessons to help her technique but short term it takes a big piece of her fun away. And having reduced hearing as she starts school is a PITA – and now having potentially 2 operations and a brace inside a year on top of a new school is going to feel really rather a big deal.