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:

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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

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