Trisomy 13

Living with

What is the controversy on performing surgery on children with Trisomy 13?

Historically, it has been a challenge for parents of children with trisomy 13 to acquire some necessary interventions needed to extend life. This could be surgically correcting a heart defect or even resuscitating (reviving to prevent death) a child with trisomy 13. There has been more push back to these conventions in recent years.

The main arguments for minimal intervention include:

  • Most babies with trisomy 13 do not live past infancy. Around 90% - 95% of children do not make it past the first year.
  • Questions about the quality of life for the infant

The main arguments against minimal intervention include:

  • Parents love their child deeply regardless of any diagnosis and should be allowed to provide them with standard medical care
  • A number of children do survive past the first year of life (5% - 10%)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520824/

Cereda, A and Carey, J.C. The trisomy 18 syndrome. Orphanet J Rare Dise. 2012; 7:81

http://ghr.nlm.nih.gov/condition/trisomy-13

Adv Clin Exp Med. 2015 Sep-Oct;24(5):911-21. doi: 10.17219/acem/26324.Medical and Ethical Considerations Related to Viable Fetuses with Trisomy 13 in the 36th Week of Pregnancy--a Review of the Literature.Pawelec M1, D?ugalik M2, Pietras J2, Be?za ?1, Latkowski ?1

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