Fifth edition, updated 2025. Free for families and clinicians.
Care of the Infant and Child with Trisomy 18 or Trisomy 13
The Care Book is SOFT's guide to day to day care for a child with Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome). It is written for parents who are expecting, living with, or remembering a child with one of these rare chromosome disorders, and it is updated as new information becomes available.
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Who the Care Book is for
Families facing Trisomy 18 or Trisomy 13 often hear very little beyond the diagnosis. This book gathers what parents and clinicians have learned over decades of caring for these children.
Expecting a baby
A new diagnosis brings a lot of questions. The Care Book explains the medical issues families commonly face so you can talk with your care team with more confidence.
More for expecting familiesParenting a child
Practical guidance on the day to day care of a living child with Trisomy 18 or Trisomy 13, including reported treatments and developmental milestones.
More for parenting familiesRemembering a child
Your child is part of this community. The book, and the families behind it, are here for you too.
More for bereaved familiesFor medical professionals
Share the Care Book with families after a Trisomy 18 or Trisomy 13 diagnosis. It pairs well with the 2025 American Academy of Pediatrics clinical report on Trisomy 13 and 18. Read the AAP guidance summary or visit SOFT for medical professionals.
