Free for families and clinicians

Trisomy 13 New and Expectant Parent Book

If your baby has been diagnosed with Trisomy 13 (Patau syndrome), this book was written for you. It explains the diagnosis in plain language, walks through pregnancy, delivery, and after care, and helps you understand the choices ahead.

Also available in print and en español.

Cover of the Trisomy 13 Patau syndrome New and Expectant Parent Book from SOFT

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What's inside the Trisomy 13 book

A diagnosis of Trisomy 13 brings more questions than any one appointment can answer. This book gives you accurate information to read at your own pace and share with the people helping you.

Understanding Trisomy 13

What Trisomy 13 (Patau syndrome) is, how it is diagnosed, and what it can mean for your baby.

Pregnancy

What to expect in the months ahead and the questions to ask your care team.

Delivery and after care

The decisions families face around birth and the care your baby may need afterward.

Birth plan workbook

A workbook to help your family and medical team plan together for delivery and after care.

Who this book is for

Parents who are expecting a baby with Trisomy 13 or have a newborn with a new diagnosis, along with grandparents and family members who want to understand. Genetic counselors and clinicians are welcome to request copies and share them with families.