Expectant Parent
Welcome to the SOFT Community. We’re so glad you have found us. If you are an expectant parent, congratulations on your precious baby! Our goal is to equip you with knowledge, empower you, and welcome you into our community.
What Now?
If you’ve just learned that your child has a Trisomy diagnosis you probably have a lot of questions and concerns. We know this can be a scary time for you. You may feel lost and hopeless but SOFT’s goal is to offer you hope, provide information and help you to not feel so alone as you navigate your journey.
Facing an uncertain outcome is likely causing you to feel out of control. You’re probably thinking, “Can I do this?” We’ve got you. We know you can do this. How do we know? Because at one time every SOFT parent felt that way.
Like all journeys, this journey will be taken step by step. For now, try to focus on the things you can control. Here are some things we recommend:
Expectant Parent Book
Trisomy 18
This book is a resource to help you understand trisomy 18 and the unique details of pregnancy, delivery, and after-care. Let this guide empower you with accurate information and clarify the options you have going forward.
Includes a birth plan & after-care workbook to help prepare your family and your medical team
Trisomy 13
This book is a resource to help you understand trisomy 13 and the unique details of pregnancy, delivery, and after-care. Let this guide empower you with accurate information and clarify the options you have going forward.
Includes a birth plan & after-care workbook to help prepare your family and your medical team
Expectant Parent Resources
Make Memories
Create a Birth Plan
This will give you a way to communicate your needs and desires to your physician. It will help you know that your medical team is on the same page with you regarding your baby’s delivery and the level medical intervention you feel is best for your baby.
Join Our Online Community
Learn All You Can
You are and will always be your child’s best advocate. Now is the time to arm yourself with knowledge. This website is a great place for that and below are a few recommendations of where to start.
Become a Member
Join SOFT and reach out to your State Contact to find other families in your area.
Prenatal Testing Resource Guide
Learn how different tests like the NIPT and amniocentesis can help you learn more about your baby’s health. Our guide explains everything in simple terms, including when these tests happen and what they involve.
Trisomy 18 Fact Sheet
Download the fact sheet to gain a clear, concise overview of Trisomy 18, including its causes, diagnosis, common challenges, and the latest insights into survival and care options—perfect for parents, families, and professionals seeking reliable information.
Trisomy 13 Fact Sheet
Grab the fact sheet for an easy-to-read overview of Trisomy 13 (Patau syndrome)—what it is, how it’s diagnosed, common challenges, and what care and survival can look like. It’s a great resource for families, friends, and anyone wanting to learn more.
Trisomy 18 Handbook for Families
When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of those questions.
Trisomy 13 Handbook for Families
When your physician first tells you that your baby may have Trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions.
