title: The experience of families with children with trisomy 13 and 18 in social networks.
abstract: BACKGROUND
  Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.
  
  
  METHODS
  We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.
  
  
  RESULTS
  A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested "full" intervention as a plan of treatment. Seventy-nine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.
  
  
  CONCLUSIONS
  Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.
authors: Department of Pediatrics and Clinical Ethics, University of Montreal, Neonatologist and Clinical Ethicist, Sainte-Justine Hospital, 3175 Chemin Côte-Sainte-Catherine, Montreal (QC), H3T 1C5 Canada. annie.janvier.hsj@ssss.gouv.qc.ca
authors: Annie
authors: A
authors: Janvier
authors: Barbara
authors: B
authors: Farlow
authors: Benjamin S
authors: BS
authors: Wilfond
mesh_terms: D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D025063:Chromosome Disorders / Q000401:mortality / Q000523:psychology*; D002882:Chromosomes, Human, Pair 13; D002887:Chromosomes, Human, Pair 18; D017281:Cost of Illness; D019988:Children with Disabilities / Q000523:psychology; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D020407:Internet; D008297:Male; D010290:Parents / Q000193:education / Q000523:psychology; D010641:Phenotype; D011247:Pregnancy; D011368:Professional-Family Relations; D011379:Prognosis; D011788:Quality of Life / Q000523:psychology*; D012151:Resuscitation / Q000523:psychology; D012657:Self-Help Groups; D011795:Surveys and Questionnaires; D015996:Survival Rate; D014314:Trisomy; D000073839:Trisomy 13 Syndrome