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Lived Experience

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



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



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



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



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



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



"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



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



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



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