Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18
| Autor: | Barbara Farlow, Tracy Brazg, Annie Janvier, Benjamin S. Wilfond, Jennifer Guon |
|---|---|
| Rok vydání: | 2013 |
| Předmět: |
Adult
Male Parents medicine.medical_specialty Trisomy 13 Syndrome media_common.quotation_subject Decision Making Psychological intervention Chromosome Disorders Genetic Counseling Trisomy Prenatal diagnosis Young Adult Quality of life (healthcare) Pregnancy Prenatal Diagnosis Surveys and Questionnaires Genetics medicine Humans Mortality Severe disability Genetics (clinical) media_common High rate Chromosomes Human Pair 13 business.industry Pregnancy Outcome Middle Aged medicine.disease Self-Help Groups Feeling Family medicine Female Chromosomes Human Pair 18 business Trisomy 18 Syndrome |
| Zdroj: | American Journal of Medical Genetics Part A. 164:308-318 |
| ISSN: | 1552-4825 |
| DOI: | 10.1002/ajmg.a.36298 |
| Popis: | Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Using mixed methods, we asked parents about their prenatal experience, their hopes, the life of their affected child, and their family experience. 332 parents answered questions about 272 children; 128 experienced PND. These parents, despite feeling pressure to terminate (61%) and being told that their baby would likely die before birth (94%), chose to continue the pregnancy. Their reasons included: moral beliefs (68%), child-centered reasons (64%), religious beliefs (48%), parent-centered reasons (28%), and practical reasons (6%). At the time of the diagnosis, most of these parents (80%) hoped to meet their child alive. By the time of birth, 25% chose a plan of full interventions. A choice of interventions at birth was associated with fewer major anomalies (P |
| Databáze: | OpenAIRE |
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