Trisomy 18 experiences 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.

Never say never about our child (Pearson A) 2015
An article by Alison Pearson, a UK parent of a daughter with T18, written for the British Medical Journal. Is critical of professionals who focus on the syndrome rather than the child.

Caring for an Infant with Trisomy 18. A case study and guidelines (Bruns D) 2014
A case study of an infant with T18 and suggestions for professionals of things to consider when caring for these babies. The link goes to google results and should lead to the PDF of the article which is available free.

Preparing for Hannah Faith (Cook K) 2013 
An article by a US parents, whose third child Hannah was antenatally diagnosed with T18. Discusses the pregnancy management chosen, the neonatal care and post birth care Hannah received and the family's experience with physicians. 

Trisomy 13 and 18 and quality of life: "Treading softly" (Fenton L) 2011
An article from a palliative care physician who attended the US SOFT conference, discusses what we mean by quality of life and parental aversion to that term when it is used to judge their children negatively and deny them treatment.

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