Edward’s Tongue
When Edward 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 Edward’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 Edward’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 Edward’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 Edward’s lower teeth were protruding in front of his top teeth. As we were concerned about this and the effects on Edward’s jaw development, we saw the surgeon again and he agreed with us that this was a good indication for a tongue reduction operation.
Edward 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. Edward 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 Edward.
We had agonized for months trying to decide whether or not to operate. I know now we made the right decision.
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