Beckwith-Wiedemann syndrome (BWS)

Are there any parents with children who have been diagnosed or suspected of Beckwith-Wiedemann syndrome (BWS)?

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A few of us in my mum circle have come across BWS, so you are definitely not alone in trying to find out more! From what the mums have shared, the key things to watch for are the enlarged tongue (macroglossia), overall larger body size, and low blood sugar (hypoglycemia) in the newborn period, some babies needed close NICU monitoring just for the glucose alone. One of my mum friends whose child was assessed at KKH said the team there was quite thorough in explaining the overgrowth aspect and also flagged that regular screening for childhood tumours, especially kidney-related ones like Wilms tumour, is really important as part of follow-up care. A few mums also mentioned that some children develop hemihypertrophy, where one side of the body grows slightly larger than the other, which can sometimes be how BWS first gets suspected. Do bring all your concerns to your paediatrician or a genetic specialist who can guide you properly for your child's specific situation!

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