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Rare Conditions in Hospital

Edwards’ and Patau’s syndromes are classified as ‘Rare Conditions’. Only 1 in 1500 pregnancies will be affected by T18 and 1 in 4000 by T13.  Statistically the vast majority of these pregnancies will end during the pregnancy itself, therefore the number of babies care for in neo-natal units will be relatively low.  It is well recognised that parents are a vital partner in the care of their children in hospital where a rare condition is present, because professional experience of the condition may be limited.

It can be helpful to have your own information resources to share with professionals.
  • We have a range of resources for families on our website here
  • SOFT UK also supports professionals caring for those affected by Triomsy and we are always happy to provide them with information, resources or signposting directly. 
  • The International Trisomy Alliance also have some excellent publications on their website
  • ITA also have a reliable selection of relevant research articles, which may be particularly useful to share with professionals. 
  • SOFT USA have some easy to read factsheets about Trisomy 13 and 18. The booklet 'Care for the Infant and Child with Trisomy 13 or Trisomy 18' is very useful and includes Trisomy specific growth charts which should sometimes be used in preference to standard charts.   
 
 
In some cases, it may be necessary for your child to be referred to an alternative Neo-Natal facility in order for them to receive the best care.  This is discussed further on the BLISS website.
 

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