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Caring for a Child

Caring for a child with T13/T18 or a related disorder can bring many challenges.  

If you are aware of any services and links you would like to share with other parents, please forward them to us at website@soft.org.uk 

When a baby lives

Leah Cerys

‘Always feel that you can ask for information or advice - as many questions and as often as you need. Ask the people you trust and who can give you the information you need.’ 
Dr Una MacFadyen, Paediatric Consultant

Feeding difficulties

Haberman feeder

Many parts of the body do not develop properly when there is a chromosome abnormality, and babies suffer from 'failure to thrive' and feeding difficulties causing slow growth and low weight gains.

More about caring


Here we explore in detail many of the practical problems of caring for a baby with trisomy 13, 18, or a related disorder. Discuss any worries with your GP or paediatrician.

Video - One extra chromosome

A delightful video featuring babies and children with various chromosome disorders, watch this video

Family Companion

Together for Short Lives publishes A Family Companion to help parents and carers of children who have been diagnosed with life-limiting and life-threatening conditions. 

Support in Scotland for babies with Edwards'

SOFT was involved in a Scottish parliamentary debate on Edwards Syndrome in December 2012.  Following this, SPICe prepared the attached document with the follow up information to the debate. It's an excellent summary of the issues raised.

  • Adam


  • Lily


  • Carol


  • Mia


  • Rubi


  • Naomi


  • Samantha


  • Faizan
  • Ellie


  • Lewis