Making Decisions After a Prenatal Diagnosis

Carrying to Term Saying Goodbye Early

If you have received a Trisomy 18 Diagnosis for your child, you are now being faced with many decisions. We hope to provide you with the information you need at each step of the way to help you make the best decisions for your child and your family.

First, please be sure you have actually received a diagnosis and not an increased risk. See How Trisomy 18 is diagnosed for an explanation of the difference between screening and diagnostic tests and to understand the tests you may have already undergone or may yet undergo.

If you have an actual diagnosis, whether or not you received it prenatally affects the choices you have to make. If your child was diagnosed after birth, you will want to read the Caring for a Child section to help you with your decisions.

If your child was diagnosed prenatally (before birth), there are two general options available to you. You need to decide if it is best for you to continue the pregnancy (Carrying to Term) or to interrupt it (Saying Goodbye Early). Ask your doctor to explain both options to you. There are sections with more information about both of those options to help you make that decision. These sections include stories of families who made those choices and an opportunity to “talk” with those families in our online support community.

This is a very difficult time and unfortunately there is no magic choice that will make this experience easier. Take your time and learn as much as you can so you can make informed decisions. Please feel free to explore both of those sections before making your decisions.

Here is some additional reading that may be helpful:

NIH FASTER Study Concludes First Trimester Screening is Better Than Second Trimester Down Syndrome Screening
First trimester Nuchal Translucency/freeBeta/PAPP-A prenatal screening for chromosomal disorders (Downs, T18/T13) has been confirmed by the NIH FASTER Study to be more effective than second trimester screening methods.

Information regarding Chromosomal Abnormalities in Multiples
To have one baby with trisomy 18 is hard enough.  To find out that you have twins or triplets and that one is affected by trisomy 18 makes decisions and treatment options all the more challenging. Here are 2 articles to help you.

Rights of Parents When a Baby Dies: Choices or Mandates?
Effective ways of presenting choices to parents at the time of their loss

Information on Accuracy of Maternal Serum Screening Test
What are my chances of having a child with Down syndrome, trisomy 18 or an open neural tube defect if I receive a screen-positive result?

NYTimes on study about risks of subsequent pregnancy too soon
VITAL SIGNS   At Risk: Putting Time Between Newborns   By ERIC NAGOURNEY  New York Times August 19, 2003

The Problem of Decision Making While in Shock
Why it is important to stop and process the news of Trisomy 18 before making any quick decisions.

What to expect from Genetic Evaluation and Counseling
This is a link to an article on what you can expect when referred to a Genetic Counselor within the limits outlined in the following disclaimer from the article.