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 book cover

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

Trisomy 13 book cover

Expectant Parent Resources

Make Memories

Start making memories with your baby every day. Take pictures throughout your pregnancy, talk to your baby, play music, journal.

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

Connect with other parents of Trisomy. They may be the only ones who fully understand what you are going through and you will quite likely create some life-long friendships. The SOFT Facebook group is a great place to do this.

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.

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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.

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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.