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.
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:
Types of Screening
- Blood (or saliva) tests
- Urine tests
- Ultrasound, including nuchal translucency
- Other tests
- 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.
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?
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.
Find the right support network for you and your family. If you have any questions we are happy to help.
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.
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.
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