Trisomy 13

Living with

What support resources are available for women during their pregnancy who are expecting a baby affected by Trisomy 13?

If a diagnosis of trisomy 13 has been confirmed through amniocentesis or CVS, support resources are available to help them as they carry their baby until birth. One of the best sources of support is perinatal hospice. Some areas have a perinatal hospice program associated with their medical centers or nearby. One such listing can be found on PerinatalHospice.org (http://www.perinatalhospice.org/list-of-programs.html). This same website provides lists of support, parent stories, birth plans, and suggestions that can be very helpful at http://www.perinatalhospice.org/resources-for-parents.html. Specific to families whose unborn baby has been diagnosed with a trisomy like trisomy 13, the SOFT organizations in the United States and United Kingdom have practical suggestions, support, stories, and ideas on their websites on pages such as http://www.soft.org.uk/Help-for-Families/Decisions-During-Pregnancy/Continuing-with-your-Pregnancy. It can be very helpful to talk to another family who has been in a similar situation and carried their baby with trisomy 13 until birth. Feel free to talk with your OB-Gyn, genetic counselor, or reach out to SOFT if you are interested in talking with another family.

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