It has recently been confirmed that my 6 month daughter has beckwith weidemann syndrome. Her main sympton is macroglossia she also has nevus flammeus and was above the 98th percentile on weight and height at birth. At current I am not happy with the consultant she is with as he seems to have very little knowledge on this and so am asking for her to be referred to GOSH. I would appreciate any comments as to what I care I should be making sure she gets and others experiences. Many Thanks
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