Trisomy 18 research

This page links to all the research we've gathered during our journey with Rumer and added to subsequently.

General

This is a list of Trisomy 18 general academic papers which may be useful.

Cardiac

This is not an area, we looked into in detail, as Rumer did not present with acute cardiac problems. We'd recommend looking at the International Trisomy Alliance website for a number of papers on cardiac sugery in T18 and T13. These are some of the papers we have.

Ethics papers

These are papers discussing the ethics of treating Trisomy 18 and similar life limiting conditions. They can be useful when arguing that treatment is not only likely to prolong life but is an ethical choice to make.

Experience and Opinion papers

These are articles from both parents and researchers that have been published in academic journals which describe experiences, an individual case or a small number of cases or are opinion pieces. These can be helpful to use to express your own point of view more clearly or to reflect on how you want your child cared for.

Miscellaeneous

A place for all the random papers which don't fit into a particular category

Pregnancy

These are papers on experiences of parents who receive an antenatal diagnosis of T18 or 13, on pregnancy management of T18 or 13 or on anomalies associated with T18 and 13 during pregnancy.