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:
Become a Member
Join Our Online Community
Learn All You Can
Create a Birth Plan
Hold on to Hope!
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.
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.
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
Health Supervision & Anticipatory Guidance for Infants & Children with Trisomy 18 & 13
The Table below is extracted from the SOFT Trisomy in Review Research Newsletter, first published in 1993 and updated in 2005. It is meant to ...
Changes in Prevalence and Outcomes in Children with Trisomy 18 & 13
PROFESSIONAL VIEWPOINT: Journal Club IRVING C., RICHMOND S, WREN C, LONGSTER C, AND EMBLETON ND. 2011. CHANGES IN PREVALENCE...
One Family’s Birth Plan
This birthing plan, for a child with trisomy 18, was prepared by Patricia Lawson, a trisomy parent. Parents: Elliott & Patti LawsonC...
Trisomy 18, Trisomy 13 and Related Disorder Syndromes
Workshop Presentation from the 2011 SOFT Conference in Chicago Presenters: Dr. John Carey and Dr. Jeannette Israel This genetic syndrome overview w...
Developmental Pediatrics and the Medical Home
From the 2011 Chicago SOFT Conference This workshop, presented by Larry W. Desch, MD, FAAP Advocate: Hope Children’s Hospital focuses on the need f...
The Nature of Hope
The Nature of Hope: A Live Interview with the Family of Little Erin Workshop Presentation From the 2010 SOFT Conference in Sioux Falls Presenter: D...