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Lived Experience

Family Stories
The SOFT UK website shares many families’ experiences of having a child with a Trisomy condition.


http://www.soft.org.uk/soft-families

 

 

Living with Cali
SOFT UK Blog from a mother of a child with Full Trisomy 18


http://www.soft.org.uk/living-with-cali

 

 

A report of experiences and feedback from parents and carers
Foster-Collins H, on behalf of SOFT UK (2019)


http://www.soft.org.uk/system/cmsassets/1005.pdf

 

 

Never say never about our child
Pearson A (2015)
BMJ. 350: h1246


https://doi.org/10.1136/bmj.h1246

 

 

Eliciting Narratives to Inform Care for Infants With Trisomy 18
Weaver MS, Starr LJ, Austin PN, Stevenson CL, Hammel JM (2018)
Pediatrics. 142(4): e20180321


https://doi.org/10.1542/peds.2018-0321

 

 

The experience of families with children with trisomy 13 and 18 in social networks
Janvier A, Farlow B, Wilfond BS (2012)
Pediatrics. 130(2): 293-8


https://www.ncbi.nlm.nih.gov/pubmed/22826570

 

 

Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18
Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A (2013)
Am J Med Genet Part A. 164A: 308–18


https://doi.org/10.1002/ajmg.a.36298

 

 

"I Would Do It All Over Again": Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis.
Wool C, Limbo R, Denny-Koelsch EM (2018)
J Clin Ethics. 29(3): 227-36


https://www.ncbi.nlm.nih.gov/pubmed/30226824/?ncbi_mmode=std

 

 

The impact of a sibling's life-limiting genetic condition on adult brothers and sisters.
Brown E, Coad J, Franklin A (2017)
Am J Med Genet A. 173(7): 1754-62


https://www.ncbi.nlm.nih.gov/pubmed/28449223

 

 

 
Incompatible with Life | Brandon Bosma
Bosma B. 2016. TEDx Talks. [Video]


https://www.youtube.com/watch?v=bzPK4Kjtxuk

 

 


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