EXPECTING A CHILD

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:

Make Memories

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

Become a Member

Join SOFT and reach out to your State Contact to find other families in your area.

Join SOFT

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.

SOFT Support Group

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.

Our Resources

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.

See an Example

Hold on to Hope!

About Trisomy

Prenatal Screening

Types of Screening

  • Blood (or saliva) tests
  • Urine tests
  • Ultrasound, including nuchal translucency
  • Other tests
  • Amniocentesis
  • Chronic villus sampling (CVS)
  • Percutaneous umbilical blood sampling (PUBS)

For those of you expectant mothers out there who may have had a blood test to determine if your baby has trisomy 21, 13, or 18, understand that test is just a screening test. It is not diagnostic. It is not marketed as diagnostic, no matter what a healthcare provider might tell you. The link below, developed by concerned obstetricians and genetic counselors, is to a calculator which will tell you how accurate your positive (positive predictive value) or negative (negative predictive value) result is. You will be surprised. Depending on your age and the particular chromosomal disorder, this test (NIPT) is not much better than a coin flip.

NIPT Predictive Value Calculator

Is Prenatal Testing Right for You?

Valuable information about your baby’s health can be learned through prenatal testing. It is important to understand the risks and benefits. There are two main types of prenatal testing – screening tests and diagnostic tests.
Before making any decision there are key questions to consider.

    • What will you do with the test results?
    • Will the information shape your prenatal care?
    • How accurate are the results?
    • What are the risks?
More about Prenatal Testing

Support

SOFT is here for you as you walk through your journey and celebrate your child. There are many groups and ways to support. Contact us with any questions or to speak with someone near you.

Finding Support

Find the right support network for you and your family. If you have any questions we are happy to help.
Trisomy SOFT Facebook Group
Contact Us

Care Book

Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. The book has been continually updated as new information has become available and is the only known resource of its kind.

Disponible en Español, Portuguese, English

Download PDF

Family Handbooks

When your physician first tells you that your baby may have trisomy 13 or trisomy 18 you will be overwhelmed with questions. These handbooks are written to answer some of these questions, to share insights of parents of children with trisomy and to give hope for the best possible outcome for your child.
Trisomy 13 Book
Trisomy 18 Book

Other Booklets

Preparing for the Arrival of Your Baby is an external resource from the International Trisomy 13/18 Alliance (ITA). If you have just received a diagnosis of trisomy 13 or trisomy 18 for your unborn or newborn baby, you are probably in a state of shock. You may feel anger and anguish together with moments of hope. These are natural emotions. This book includes the most recently published research and provides a broad overview of trisomy 13 and trisomy 18, pregnancy, possible outcomes, planning and caring for a baby.
More free booklets can be found on the ITA website. Visit site

Download PDF

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