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

Pediatrics

Volumn 130, Issue 2, 2012, Pages 293-298

  Janvier, Annie ^a   Farlow, Barbara ^b   Wilfond, Benjamin S ^c  

^a UNIVERSITY OF MONTREAL   (Canada)

^b Patients for Patient Safety Canada   (Canada)

^c UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

Author keywords

End of life decision making; Ethics; Life sustaining interventions; Parental opinions; Quality of life; Trisomy 13; Trisomy 18

Indexed keywords

ADULT; ARTICLE; CAREGIVER BURDEN; CHILD; CLINICAL ASSESSMENT; FAMILY COPING; FAMILY INTERACTION; FAMILY LIFE; FEMALE; GASTROSTOMY; HEALTH PERSONNEL ATTITUDE; HUMAN; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; OXYGEN THERAPY; PARENTAL ATTITUDE; PERSONAL EXPERIENCE; PRESCHOOL CHILD; PRIORITY JOURNAL; QUESTIONNAIRE; SOCIAL NETWORK; SUPPORT GROUP; SURVIVAL RATE; SURVIVAL TIME; TRACHEOSTOMY; TREATMENT PLANNING; TRISOMY 13; TRISOMY 18;

CAREGIVERS; CHILD; CHILD, PRESCHOOL; CHROMOSOME DISORDERS; CHROMOSOMES, HUMAN, PAIR 13; CHROMOSOMES, HUMAN, PAIR 18; COST OF ILLNESS; DISABLED CHILDREN; FEMALE; HUMANS; INFANT; INFANT, NEWBORN; INTERNET; MALE; PARENTS; PHENOTYPE; PREGNANCY; PROFESSIONAL-FAMILY RELATIONS; PROGNOSIS; QUALITY OF LIFE; QUESTIONNAIRES; RESUSCITATION; SELF-HELP GROUPS; SURVIVAL RATE; TRISOMY;

EID: 84864502192     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2012-0151     Document Type: Article

References (37)

1. Koogler TK, Wilfond BS, Ross LF. Lethal language, lethal decisions. Hastings Cent Rep. 2003;33(2):37-41
2. Morris JK, Savva GM. The risk of fetal loss following a prenatal diagnosis of trisomy 13 or trisomy 18. Am J Med Genet A. 2008;146(7):827-832 (Pubitemid 351499786)
3. Baty BJ, Blackburn BL, Carey JC. Natural history of trisomy 18 and trisomy 13: I. Growth, physical assessment, medical histories, survival, and recurrence risk. Am J Med Genet. 1994;49(2):175-188 (Pubitemid 24018129)
4. Baty BJ, Jorde LB, Blackburn BL, Carey JC. Natural history of trisomy 18 and trisomy 13: II. Psychomotor development. Am J Med Genet. 1994;49(2):189-194 (Pubitemid 24018130)
5. Parker MJ, Budd JL, Draper ES, Young ID. Trisomy 13 and trisomy 18 in a defined population: epidemiological, genetic and prenatal observations. Prenat Diagn. 2003;23(10):856-860 (Pubitemid 37279874)
6. Rasmussen SA, Wong LY, Yang Q, May KM, Friedman JM. Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics. 2003;111(4 pt 1):777-784 (Pubitemid 36402901)
7. Vendola C, Canfield M, Daiger SP, et al. Survival of Texas infants born with trisomies 21, 18, and 13. Am J Med Genet A. 2010;152A(2):360-366
8. Tucker ME, Garringer HJ, Weaver DD. Pheontypic spectrum of mosaic trisomy 18: two new patients, a literature review, and counselling issues. Am J Med Genet A. 2007;143(5):505-517 (Pubitemid 46348922)
9. Griffith CB, Vance GH, Weaver DD. Phenotypic variability in Trisomy 13 mosaicism: two new patients and literature review. Am J Med Genet A. 2009;149A(6):1346-1358
10. American Academy of Pediatrics, Kattwinkel J, ed. Textbook of Neonatal Resuscitation. 5th ed. Elk Grove Village, IL: American Academy of Pediatrics; 9-1-9-16
11. Morrison LJ, Kierzek G, Diekema DS, et al. Part 3: ethics: 2010 American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. Circulation. 2010;122(18 suppl 3):S665-S675
12. Crider KS, Olney RS, Cragan JD. Trisomies 13 and 18: population prevalences, characteristics, and prenatal diagnosis, metropolitan Atlanta, 1994-2003. Am J Med Genet A. 2008;146(7):820-826 (Pubitemid 351499785)
13. Michalitsi VD, Skentou H, Euripioti H, et al. Attitudes of pregnant women regarding termination of pregnancy for fetal abnormality. Prenat Diagn. 2010;30(10):97.7-97.80
14. Farlow B. Misgivings. Hastings Cent Rep. 2009;39(5):19-21
15. Farlow B. The decision to accept disability, one family's perspective. Barbara Farlow. Paediatr Child Health (Oxford). 2008;13(5):367 (Pubitemid 352039225)
16. Farlow B. Choosing the road less traveled. Curr Probl Pediatr Adolesc Health Care. 2011;41(4):115-116
17. Thiele P. He was my son, not a dying baby. J Med Ethics. 2010;36(11):646-647
18. Walker LV, Miller VJ, Dalton VK. The health-care experiences of families given the prenatal diagnosis of trisomy 18. J Perinatol. 2008;28(1):12-19
19. Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Method Approaches. Thousand Oaks, CA: Sage Publications; 2003
20. Denzin NK, Lincoln YS. Handbook of Qualitative Research. 2nd ed. Thousand Oaks, CA: Sage Publications; 2000
21. Centers for Disease Control and Prevention. Births and natality. Available at: www.cdc.gov/nchs/fastats/births.htm. Accessed May 28, 2011
22. NCHS Data Brief. Delayed childbearing: more women are having their first child later in life. Available at: www.cdc.gov/nchs/data/databriefs/db21.pdf. Accessed May 25, 2011
23. US Census Bureau. Fertility of American Women: 2008. Available at: www.census.gov/prod/2010pubs/p20-563.pdf. Accessed May 27, 2011
24. U.S Census Bureau. American Fact Finder. Available at: http://factfinder.census.gov/servlet/STTable?-bm=y&-geo-id= 01000US&-qr-name=ACS-2006-EST-G00-S1501&-ds-name=ACS-2006-EST-G00-&- redoLog=false. Accessed May 27, 2011
25. Mercurio MR. The ethics of newborn resuscitation. Semin Perinatol. 2009;33(6):354-363
26. McGraw MP, Perlman JM. Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics. 2008;121(6):1106-1110
27. Carey JC. Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics. 2009;123(3). Available at: www.pediatrics.org/cgi/content/full/123/ 3/e547
28. Janvier A, Okah F, Farlow B, Lantos JD. An infant with trisomy 18 and a ventricular septal defect. Pediatrics. 2011;127(4):754-759
29. Wilkinson DJ. Antenatal diagnosis of trisomy 18, harm and parental choice. J Med Ethics. 2010;36(11):644-645
30. Lyneham J. Is there harm in silence? J Med Ethics. 2010;36(11):642-643
31. Catlin A. Trisomy 18 and choices. Adv Neonatal Care. 2010;10(1):32
32. Donohue PK, Boss RD, Aucott SW, Keene EA, Teague P. The impact of neonatologists'religiosity and spirituality on health care delivery for high-risk neonates. J Palliat Med. 2010;13(10):1219-1224
33. Kopelman LM. The best interest standard in treatment decisions for young children. In: Pediatric Bioethics. Cambridge, United Kingdom: Cambridge University Press; 2010:3
34. Kumar, P Care of an infant with lethal malformation: where do we draw the line? An infant with trisomy 18 and a ventricular septal defect. Pediatrics. 2011;128(6). Available at: www.pediatrics.org/cgi/content/full/128/6/e1642
35. Saigal S, Rosenbaum PL, Feeny D, et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics. 2000;105(3 pt 1):569-574 (Pubitemid 30129673)
36. Streiner DL, Saigal S, Burrows E, Stoskopf B, Rosenbaum P. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108(1):152-157 (Pubitemid 32592019)
37. Lam HS, Wong SP, Liu FY, Wong HL, Fok TF, Ng PC. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics. 2009;123(6):1501-1508