Support for Trisomy 18, Trisomy 13, and Trisomy 9
If you have just learned that your baby has Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, or a related rare chromosome disorder, SOFT is here. You are not alone, and help is a click away.
Get the Right Book
A free, complete guide for your diagnosis, with a birth plan workbook included.
Find Your BookTalk to a SOFT Parent
Connect one on one with a trained parent who has walked this path.
Reach Out NowWhat Now?
A trisomy diagnosis can feel overwhelming. You may feel lost, scared, or unsure what comes next. SOFT's goal is to offer you hope, give you real information, and help you feel less alone as you take this journey step by step.
New and Expectant Parent Books
Written specifically for families navigating a new diagnosis. Each book covers pregnancy, delivery, and after care, and includes a birth plan workbook. Free to download, available in print, and in Spanish where noted.
Trisomy 18 Book
Understand Trisomy 18, also called Edwards syndrome, and the choices ahead for pregnancy, delivery, and after care.
Disponible en Espanol
Trisomy 13 Book
Understand Trisomy 13, also called Patau syndrome, and the choices ahead for pregnancy, delivery, and after care.
Disponible en Espanol
Trisomy 9 Book
Understand Trisomy 9 and the choices ahead for pregnancy, delivery, and after care.
Espanol: Coming SoonResource Guides
Quick, two page references covering the facts, your choices, the specialists you may meet, and a set of trusted resources. Free to print and share.
Trisomy 18 Resource Guide
A quick reference for Trisomy 18, also called Edwards syndrome, covering diagnosis, care choices, and support. Genetic counselors and clinicians are welcome to print and share it with families.
Download
Trisomy 13 Resource Guide
A quick reference for Trisomy 13, also called Patau syndrome, covering diagnosis, care choices, and support. Genetic counselors and clinicians are welcome to print and share it with families.
DownloadExpectant Parent Resources
AAP Care Guidance for Trisomy 13 and 18
New guidance from the American Academy of Pediatrics on evolving care for infants and children with Trisomy 13 and Trisomy 18.
AAP News Clinical ReportFor Medical Professionals
Genetic counselors, geneticists, neonatologists, and MFM clinicians will find growth charts, cardiac surgery outcomes, and published research on Trisomy 18 and Trisomy 13 in our full research library. Parents are welcome too, many bring these studies directly to their own doctor.
Visit the Medical Professionals PageCreate a Birth Plan
Communicate your needs and wishes to your medical team ahead of delivery, so everyone is working from the same page.
Birth Plan English Birth Plan SpanishPrenatal Testing Resource Guide
Learn how tests like NIPT and amniocentesis work, in plain language, including when they happen and what to expect.
Download GuideTrisomy 18 Fact Sheet
A concise overview of Trisomy 18, also called Edwards syndrome, including causes, diagnosis, and care options.
DownloadTrisomy 13 Fact Sheet
A concise overview of Trisomy 13, also called Patau syndrome, including causes, diagnosis, and care options.
DownloadTrisomy 18 Handbook for Families
Answers to the questions families ask most after a Trisomy 18 diagnosis, written for the moment you need it most.
DownloadTrisomy 13 Handbook for Families
Answers to the questions families ask most after a Trisomy 13 diagnosis, written for the moment you need it most.
DownloadJoin Our Community
You do not have to navigate this alone. Here are two ways to connect with other families right now.
Become a Member
Join SOFT and connect with your state contact to find other families near you.
Join SOFTJoin the Online Community
Connect with other parents navigating Trisomy 18, Trisomy 13, Trisomy 9, and related rare chromosome disorders in the SOFT Facebook group.
Join the GroupCare Book
Care of the Infant and Child with Trisomy 18 or Trisomy 13
Written for parents who are expecting, living with, or remembering a child affected by Trisomy 18 or Trisomy 13. Covers day to day care and management for the living child, continually updated as new information becomes available. The only known resource of its kind.
Download PDFStill Not Sure Where to Start?
Every family's path looks different. Reach out and a SOFT team member will help point you to the right resource, whatever your diagnosis or situation.
Contact SOFT
