Stories

One experience of tongue reduction surgery

When Fred was born his tongue was larger than normal, but not huge by some BWS standards. When we expressed our concerns, the doctors said there was nothing wrong. However, over the next few months Fred’s tongue became much bigger until by 3 months he was looking quite strange. Eventually at 5 months my diagnosis of BWS was confirmed and shortly afterwards we saw a local surgeon. He said Fred’s macroglossia was mild and he didn’t want to rush into surgery.

We saw him again 4 months later and he still wasn’t sure. As I had already been in touch with Caroleen Shipster, a speech therapist with considerable experience of BWS at Great Ormond Street Hospital, he referred us to her. Caroleen stressed that just because Fred’s macroglossia was mild didn’t mean that he wouldn’t benefit from surgery. We also saw an orthodontist and surgeon from the craniofacial team. At this point the macroglossia appeared to be improving, so everyone advised us to wait and see for a few more months. However, in the meantime we noticed that Fred’s lower teeth were protruding in front of his top teeth. As we were concerned about this and the effects on Fred’s jaw development, we saw the surgeon again and he agreed with us that this was a good indication for a tongue reduction operation.

Fred had his tongue reduction operation at 20 months at GOSH. The operation went very smoothly and the surgeon took 25-30% of his tongue away. Fred made a good recovery and we stayed 2 nights in the hospital. The first night he was very sleepy and wanted to sleep on my shoulder most of the time. He had his first drink of water the next morning and ate some mashed banana and custard in the afternoon. The next day and night he was much more fractious and wouldn’t eat or drink anything except jelly, and kept pulling at his stitches. However, once home he was much happier and lived on crème caramel and egg custard for the next few days. By five weeks post surgery most of the stitches had dissolved and the tongue looked great. Now, nearly one year one from his surgery there is no visible scarring and his tongue looks completely normal, as does Fred.

We had agonized for months trying to decide whether or not to operate. I know now we made the right decision.

Postscript

Fred is now nearly 12 and has perfect speech and looks really great. You would never be able to tell that he had had tongue reduction surgery. He had a brace when he was 8 to flick his top front teeth over the bottom ones which did the job in 6 weeks and he will also need to have some further orthodontic treatment in the next few years. We are very grateful to all the team at GOSH who were involved with Fred’s tongue reduction as it transformed his appearance, his speech and ultimately his life.

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