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Am J Perinatol 2022; 39(11): 1248-1253
DOI: 10.1055/s-0040-1722602
Original Article

Attitudes of Argentinean Neonatologists toward Resuscitation of Infants with Trisomies 21, 18, and 13: A Multicenter Survey

Agustín Silberberg 
1   Department of Bioethics, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina
,
Adolfo Etchegaray
2   Division of Fetal Medicine, Hospital Universitario Austral, Buenos Aires, Argentina
,
Sofía Juárez Peñalva
2   Division of Fetal Medicine, Hospital Universitario Austral, Buenos Aires, Argentina
3   Division of Genetics, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina
,
Marcelo J. Villar
4   Institute of Translational Research, Facultad de Ciencias Biomédicas, Universidad Austral, Buenos Aires, Argentina
,
Gabriel Musante
5   Division of Neonatology, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina
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Abstract

Objective This study was aimed to explore the attitude of Argentinean neonatologists in the delivery room on resuscitating infants with trisomies.

Study Design An anonymous questionnaire was completed by neonatologists staffing level-III neonatal intensive care units (NICUs) on resuscitation of children with trisomies 21, 18, and 13. Potential sociocultural factors influencing the decision to resuscitate were included.

Results Overall, 314 neonatologists in 34 units in the Buenos Aires region participated (response rate of 54%). The position of neonatologists regarding the resuscitation in the delivery room was that 98% would resuscitate newborns with trisomy 21, and 47% with trisomy 18 or trisomy 13. Resuscitation of newborns with trisomy 18 or trisomy 13 by neonatologists was significantly associated with working in the public sector, religious beliefs, and legal framework.

Conclusion With improvement in the management and treatment of infants with trisomies 18 and 13, Argentinean neonatologists showed a favorable attitude toward resuscitating them in the delivery room.

Key Points

  • We explored the attitudes of Argentinean neonatologists on resuscitation of children with trisomies.

  • Half of neonatologists would resuscitate newborns with trisomies18 and 13.

  • These results suggest an ongoing paradigm shift of the most severe trisomies.

Keywords

trisomies - neonatal resuscitation - neonatology - decision-making - ethics


Publication History

Received: 12 November 2020

Accepted: 04 December 2020

Article published online:
17 January 2021

© 2021. Thieme. All rights reserved.

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  • References

  • 1 Kazemi M, Salehi M, Kheirollahi M. Down syndrome: current status, challenges and future perspectives. Int J Mol Cell Med 2016; 5 (03) 125-133
    PubMedSearch in Google Scholar
  • 2 Nelson KE, Hexem KR, Feudtner C. Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States. Pediatrics 2012; 129 (05) 869-876
    CrossrefPubMedSearch in Google Scholar
  • 3 Jacobs AP, Subramaniam A, Tang Y. et al. Trisomy 18: a survey of opinions, attitudes, and practices of neonatologists. Am J Med Genet A 2016; 170 (10) 2638-2643
    CrossrefPubMedSearch in Google Scholar
  • 4 Carey JC. Perspectives on the care and management of infants with trisomy 18 and trisomy 13: striving for balance. Curr Opin Pediatr 2012; 24 (06) 672-678
    CrossrefPubMedSearch in Google Scholar
  • 5 Cereda A, Carey JC. The trisomy 18 syndrome. Orphanet J Rare Dis 2012; 7: 81
    Search in Google Scholar
  • 6 Lantos JD. Trisomy 13 and 18–treatment decisions in a stable gray zone. JAMA 2016; 316 (04) 396-398
    CrossrefPubMedSearch in Google Scholar
  • 7 Springett A, Wellesley D, Greenlees R. et al. Congenital anomalies associated with trisomy 18 or trisomy 13: a registry-based study in 16 European countries, 2000-2011. Am J Med Genet A 2015; 167A (12) 3062-3069
    CrossrefPubMedSearch in Google Scholar
  • 8 Meyer RE, Liu G, Gilboa SM. et al; National Birth Defects Prevention Network. Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study. Am J Med Genet A 2016; 170A (04) 825-837
    CrossrefPubMedSearch in Google Scholar
  • 9 Presson AP, Partyka G, Jensen KM. et al. Current estimate of Down syndrome population prevalence in the United States. J Pediatr 2013; 163 (04) 1163-1168
    CrossrefPubMedSearch in Google Scholar
  • 10 Glasson EJ, Jacques A, Wong K, Bourke J, Leonard H. Improved survival in Down syndrome over the last 60 years and the impact of perinatal factors in recent decades. J Pediatr 2016; 169: 214-20.e1
    CrossrefPubMedSearch in Google Scholar
  • 11 Barbero P, Bidondo MP, Duarte S, Groisman B, Liascovich R, Piola A. Reporte Anual RENAC 2019. Accessed April 18, 2020 at: http://www.anlis.gov.ar/cenagem/wp-content/uploads/2017/07/Reporte-RENAC-2019.pdf
    PubMed
  • 12 Placencia FX, McCullough LB. The history of ethical decision making in neonatal intensive care. J Intensive Care Med 2011; 26 (06) 368-384
    CrossrefPubMedSearch in Google Scholar
  • 13 Silberberg A, Herich LC, Croci I, Cuttini M, Villar MJ, Requena Meana P. Limitation of life-sustaining treatment in NICU: physicians' beliefs and attitudes in the Buenos Aires region. Early Hum Dev 2020; 142: 104955
    CrossrefPubMedSearch in Google Scholar
  • 14 Haug S, Goldstein M, Cummins D, Fayard E, Merritt TA. Using patient-centered care after a prenatal diagnosis of trisomy 18 or trisomy 13: a review. JAMA Pediatr 2017; 171 (04) 382-387
    CrossrefPubMedSearch in Google Scholar
  • 15 Brosco JP, Feudtner C. Shared decision making for children with trisomy 13 and 18. JAMA Pediatr 2017; 171 (04) 324-325
    CrossrefPubMedSearch in Google Scholar
  • 16 Janvier A, Farlow B, Barrington K. Cardiac surgery for children with trisomies 13 and 18: where are we now?. Semin Perinatol 2016; 40 (04) 254-260
    CrossrefPubMedSearch in Google Scholar
  • 17 Silberberg AA, Gallo JE. Managing end-of-life decisions in critical infants: a survey of neonatologists in Cordoba, Argentina. Acta Paediatr 2013; 102 (10) e475-e477
    CrossrefPubMedSearch in Google Scholar
  • 18 Silberberg AA, Gallo JE. Ethical dilemmas associated with clinicians' decisions about treatment in critically ill infants born in Córdoba, Argentina. J Child Health Care 2017; 21 (01) 121-126
    CrossrefPubMedSearch in Google Scholar
  • 19 Morris JK, Alberman E. Trends in Down's syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register. BMJ 2009; 339: b3794
    CrossrefPubMedSearch in Google Scholar
  • 20 Carey JC. Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics 2009; 123 (03) e547-e548 , author reply e549
    CrossrefPubMedSearch in Google Scholar
  • 21 Hasegawa SL, Fry JT. Moving toward a shared process: The impact of parent experiences on perinatal palliative care. Semin Perinatol 2017; 41 (02) 95-100
    CrossrefPubMedSearch in Google Scholar
  • 22 Janvier A, Watkins A. Medical interventions for children with trisomy 13 and trisomy 18: what is the value of a short disabled life?. Acta Paediatr 2013; 102 (12) 1112-1117
    CrossrefPubMedSearch in Google Scholar
  • 23 Kobayashi J, Kaneko Y, Yamamoto Y, Yoda H, Tsuchiya K. Radical surgery for a ventricular septal defect associated with trisomy 18. Gen Thorac Cardiovasc Surg 2010; 58 (05) 223-227
    CrossrefPubMedSearch in Google Scholar
  • 24 Kaneko Y, Kobayashi J, Yamamoto Y. et al. Intensive cardiac management in patients with trisomy 13 or trisomy 18. Am J Med Genet A 2008; 146A (11) 1372-1380
    CrossrefPubMedSearch in Google Scholar
  • 25 Lund ICB, Becher N, Petersen OB, Hill M, Chitty L, Vogel I. Preferences for prenatal testing among pregnant women, partners and health professionals. Dan Med J 2018; 65 (05) A5486
    PubMedSearch in Google Scholar
  • 26 Patterson J, Taylor G, Smith M, Dotters-Katz S, Davis AM, Price W. Transitions in care for infants with trisomy 13 or 18. Am J Perinatol 2017; 34 (09) 887-894
    Thieme ConnectPubMedSearch in Google Scholar
  • 27 Skotko BG, Levine SP, Macklin EA, Goldstein RD. Family perspectives about Down syndrome. Am J Med Genet A 2016; 170A (04) 930-941
    CrossrefPubMedSearch in Google Scholar
  • 28 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
    CrossrefPubMedSearch in Google Scholar
  • 29 McGraw MP, Perlman JM. Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics 2008; 121 (06) 1106-1110
    CrossrefPubMedSearch in Google Scholar
  • 30 Ministerio de Salud de la Nación. Indicadores básicos Argentina 2019. Accessed April 18, 2020 at: http://www.deis.msal.gov.ar/wp-content/uploads/2019/12/Indicadores-Basicos-2019.pdf
    PubMed
  • 31 Janvier A, Farlow B, Barrington KJ. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet 2016; 172 (03) 279-287
    CrossrefPubMedSearch in Google Scholar
  • 32 Weiss AR, Binns HJ, Collins Jr. JW, deRegnier RA. Decision-making in the delivery room: a survey of neonatologists. J Perinatol 2007; 27 (12) 754-760
    CrossrefPubMedSearch in Google Scholar
  • 33 Silberberg A, Robetto J, Grimaux G, Nucifora L, Moreno Villares JM. Ethical issues about the paradigm shift in the treatment of children with trisomy 18. Eur J Pediatr 2020; 179 (03) 493-497
    CrossrefPubMedSearch in Google Scholar