The experience of families with children with trisomy 13 and 18 in social networks

Pediatrics. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151. Epub 2012 Jul 23.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Chromosome Disorders / mortality
  • Chromosome Disorders / psychology*
  • Chromosomes, Human, Pair 13
  • Chromosomes, Human, Pair 18
  • Cost of Illness*
  • Disabled Children / psychology
  • Female
  • Humans
  • Infant
  • Infant, Newborn
  • Internet
  • Male
  • Parents / education
  • Parents / psychology
  • Phenotype
  • Pregnancy
  • Professional-Family Relations*
  • Prognosis
  • Quality of Life / psychology*
  • Resuscitation / psychology
  • Self-Help Groups*
  • Surveys and Questionnaires
  • Survival Rate
  • Trisomy 13 Syndrome
  • Trisomy*

Supplementary concepts

  • Chromosome 18, trisomy 18p