When a pregnant woman and her family are told that their unborn baby has trisomy 13 and then it is confirmed through an amniocentesis or other prenatal diagnostic testing, it means that they are suddenly moved from a happy expectant place into a scary world of uncertainty, numbers, and frightening medical complications. Words such as lethal or ‘incompatible with life’ may be used. In most situations, a doctor is not telling a woman to end her pregnancy, but they will give their opinion based on their medical knowledge and past experience. However bleak the possible outcomes, the doctor, genetic counselor, and medical team should respect that it is that family and that pregnant woman’s choice to continue the pregnancy until term or not. It may help to talk to friends, family, doctors and faith leaders, before making a choice based on individual circumstances. It may help to reach out to organizations such as the SOFT support organization at http://trisomy.org. If a healthcare professional does not seem to be respecting or supportive of a pregnant woman’s decisions related to her pregnancy, then it is okay to seek another care team. Before changing care teams though it is best to discuss any concerns with the current doctor and team to determine if they are unknowingly pushing towards one decision or another.
Other Questions About Trisomy 13
- Will my child be less severely affected if they have mosaic Trisomy 13?
- Why does my doctor seem to want me to have an abortion because my baby has Trisomy 13?
- Where do I find other families with a child with Trisomy 13?
- Where can I learn more about Trisomy 13?
- What support resources are available for women during their pregnancy who are expecting a baby affected by Trisomy 13?
