Parenting a Child with Trisomy 18, Trisomy 13, or Trisomy 9
You know your child better than anyone. SOFT helps you find care information, practical resources, and other parents raising a child with Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, or a related rare chromosome disorder.
Get the Care Book
The most complete guide to day to day care for a living child, updated in 2025.
Get Your Free CopyRead the AAP Guidance
Pediatric care guidance for Trisomy 13 and 18 to bring to your next appointment.
Read the SummaryFind Other Parents
Connect with families who understand in the SOFT online support group.
Join the GroupManaging Your Child's Care
Raising a child with complex medical needs can be exhausting and lonely, and it can also be one of the most rewarding things you ever do. Between specialists, insurance, equipment, and everyday care, it is a lot to carry.
Start with the Care 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 with Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome). Most of the book covers medical issues and day to day care for the living child, and it is updated as new information becomes available. The only known resource of its kind.
Get the Free Care BookCaring for Your Child
Resources from SOFT families, our Medical Advisory Board, and past conference presentations.
AAP Care Guidance for Trisomy 13 and 18
Guidance from the American Academy of Pediatrics on caring for infants and children with Trisomy 13 and Trisomy 18.
SOFT Summary Clinical ReportMedical and Surgical Care
What other families have experienced with surgeries, growth, and ongoing medical care.
Care Decisions and Comfort
Planning with your care team at any stage, for whatever path is right for your family.
Insurance and Benefits
Programs that can help cover your child's medical care, therapies, and equipment.
Medicaid Waivers, SCHIP, and SSIResearch and Publications
Published studies on Trisomy 18 and Trisomy 13. Many parents bring these directly to their child's doctors.
Publications and Reports Medical Professionals PageFamily Stories
Read how other families are raising their children with trisomy conditions, and share your own.
Read the Stories Share Your StoryResources by Diagnosis
Fact sheets, family handbooks, and resource guides for each condition.
Trisomy 18
Trisomy 13
Another diagnosis? SOFT supports families with related rare chromosome disorders too. See related disorders or contact us. Spanish speaking families can visit Recursos en Español.
Learn from the Experts
Every Case Is Unique
Dr. McCaffrey talks about delivering the best possible medical care to babies born with Trisomy 13 and Trisomy 18, recorded at the Perinatal Conference in Dublin. He has long advocated for families facing a difficult perinatal diagnosis.
More on the Talking Trisomy PodcastJoin Our Community
No one understands this life like another trisomy parent. Here is how to find your people.
Become a Member
Join SOFT and connect with your State Contact to find other families near you.
Join SOFTJoin the Online Community
Connect with parents raising children with Trisomy 18, Trisomy 13, Trisomy 9, and related rare chromosome disorders in the SOFT Facebook group.
Join the GroupCome to the Conference
The SOFT Annual Conference brings families, siblings, and clinicians together every summer for medical sessions, peer support, and time together.
Conference DetailsListen to Talking Trisomy
Conversations with parents, advocates, and clinicians about life with a trisomy condition.
Listen NowLooking for Something Specific?
Every child is different. Reach out and a SOFT team member will help you find the right resource for your family.
Contact SOFT
