My 3 week old daughter had been diagnosed as BWS she had an omphlas at birth which has been put in thro surgery still waiting to see her doctor any advice anyone
Many apologies for not replying sooner. Our son also has BWS and he is now 35 with four lovely children of his own so congratulations on the birth of your daughter.
Most of the problems related to BWS occur in childhood so you need to watch out for any difficulties caused by an enlarged tongue. If you live in the UK the national centre for tongue reductions is Great Ormond Street Hospital in London. It would be worthwhile to have a look at their website as there are some very good factsheets about BWS and also about the tongue reduction operation. Have you seen our website? It can be found at bwssupport.com There are some BWS stories on there which I hope are useful.
With regard to screening it would be advisable to have a genetic test if this has not already happened. This will tell you which subgroup your daughter belongs to, which in turn will inform what screening will be necessary. The protocol for screening does differ between Europe and the USA at present.
If you do want to contact other parents we have a Facebook group which can be found at facebook.com/groups/beckwit...
The group is run by Natalie who is excellent and very knowledgeable.
Hope this helps and very best wishes to you, your daughter and family.
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