Skip to main content

Advertising Disclaimer »

Main menu

  • Journals
    • Pediatrics
    • Hospital Pediatrics
    • Pediatrics in Review
    • NeoReviews
    • AAP Grand Rounds
    • AAP News
  • Authors/Reviewers
    • Submit Manuscript
    • Author Guidelines
    • Reviewer Guidelines
    • Open Access
    • Editorial Policies
  • Content
    • Current Issue
    • Online First
    • Archive
    • Blogs
    • Topic/Program Collections
    • AAP Meeting Abstracts
  • Pediatric Collections
    • COVID-19
    • Racism and Its Effects on Pediatric Health
    • More Collections...
  • AAP Policy
  • Supplements
    • Supplements
    • Publish Supplement
  • Multimedia
    • Video Abstracts
    • Pediatrics On Call Podcast
  • Subscribe
  • Alerts
  • Careers
  • Other Publications
    • American Academy of Pediatrics

User menu

  • Log in
  • My Cart

Search

  • Advanced search
American Academy of Pediatrics

AAP Gateway

Advanced Search

AAP Logo

  • Log in
  • My Cart
  • Journals
    • Pediatrics
    • Hospital Pediatrics
    • Pediatrics in Review
    • NeoReviews
    • AAP Grand Rounds
    • AAP News
  • Authors/Reviewers
    • Submit Manuscript
    • Author Guidelines
    • Reviewer Guidelines
    • Open Access
    • Editorial Policies
  • Content
    • Current Issue
    • Online First
    • Archive
    • Blogs
    • Topic/Program Collections
    • AAP Meeting Abstracts
  • Pediatric Collections
    • COVID-19
    • Racism and Its Effects on Pediatric Health
    • More Collections...
  • AAP Policy
  • Supplements
    • Supplements
    • Publish Supplement
  • Multimedia
    • Video Abstracts
    • Pediatrics On Call Podcast
  • Subscribe
  • Alerts
  • Careers

Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

American Academy of Pediatrics
Article

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Annie Janvier, Barbara Farlow and Benjamin S. Wilfond
Pediatrics August 2012, 130 (2) 293-298; DOI: https://doi.org/10.1542/peds.2012-0151
Annie Janvier
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Barbara Farlow
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Benjamin S. Wilfond
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • Article
  • Figures & Data
  • Info & Metrics
  • Comments
Loading

This article requires a subscription to view the full text. If you have a subscription you may use the login form below to view the article. Access to this article can also be purchased.

Download PDF

Abstract

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.

KEY WORDS
  • trisomy 13
  • trisomy 18
  • life-sustaining interventions
  • quality of life
  • parental opinions
  • ethics
  • end of life decision-making
  • Abbreviations:
    T13-18 —
    trisomy 13 and trisomy 18
    • Accepted April 17, 2012.
    • Copyright © 2012 by the American Academy of Pediatrics

    Individual Login

    Log in
    You will be redirected to aap.org to login or to create your account.

    Institutional Login

    via Institution

    You may be able to gain access using your login credentials for your institution. Contact your librarian or administrator if you do not have a username and password.

    Log in through your institution

    If your organization uses OpenAthens, you can log in using your OpenAthens username and password. To check if your institution is supported, please see this list. Contact your library for more details.

    Purchase access

    You may purchase access to this article. This will require you to create an account if you don't already have one.

    Offer Reprints

    PreviousNext
    Back to top

    Advertising Disclaimer »

    In this issue

    Pediatrics
    Vol. 130, Issue 2
    1 Aug 2012
    • Table of Contents
    • Index by author
    View this article with LENS
    PreviousNext
    Email Article

    Thank you for your interest in spreading the word on American Academy of Pediatrics.

    NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

    Enter multiple addresses on separate lines or separate them with commas.
    The Experience of Families With Children With Trisomy 13 and 18 in Social Networks
    (Your Name) has sent you a message from American Academy of Pediatrics
    (Your Name) thought you would like to see the American Academy of Pediatrics web site.
    CAPTCHA
    This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
    Request Permissions
    Article Alerts
    Log in
    You will be redirected to aap.org to login or to create your account.
    Or Sign In to Email Alerts with your Email Address
    Citation Tools
    The Experience of Families With Children With Trisomy 13 and 18 in Social Networks
    Annie Janvier, Barbara Farlow, Benjamin S. Wilfond
    Pediatrics Aug 2012, 130 (2) 293-298; DOI: 10.1542/peds.2012-0151

    Citation Manager Formats

    • BibTeX
    • Bookends
    • EasyBib
    • EndNote (tagged)
    • EndNote 8 (xml)
    • Medlars
    • Mendeley
    • Papers
    • RefWorks Tagged
    • Ref Manager
    • RIS
    • Zotero
    Share
    The Experience of Families With Children With Trisomy 13 and 18 in Social Networks
    Annie Janvier, Barbara Farlow, Benjamin S. Wilfond
    Pediatrics Aug 2012, 130 (2) 293-298; DOI: 10.1542/peds.2012-0151
    del.icio.us logo Digg logo Reddit logo Twitter logo CiteULike logo Facebook logo Google logo Mendeley logo
    Print
    Download PDF
    Insight Alerts
    • Table of Contents

    Jump to section

    • Article
      • Abstract
      • Methods
      • Results
      • Discussion
      • Appendix
      • Footnotes
      • References
    • Figures & Data
    • Info & Metrics
    • Comments

    Related Articles

    • No related articles found.
    • PubMed
    • Google Scholar

    Cited By...

    • Conventional revolution: the ethical implications of the natural progress of neonatal intensive care to artificial wombs
    • Who Is the Next "Baby Doe?" From Trisomy 21 to Trisomy 13 and 18 and Beyond
    • Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome
    • Eliciting Narratives to Inform Care for Infants With Trisomy 18
    • NICU Communication: The Many Disguises of Opportunity
    • Home Extubation in a Neonate
    • Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents
    • Beyond the Genetic Diagnosis: Providing Parents What They Want to Know
    • Trisomy 13: Changing Perspectives
    • Phenotypic extremes in liveborn monozygotic twins with mosaic Edwards syndrome
    • Mortality and Morbidity of VLBW Infants With Trisomy 13 or Trisomy 18
    • Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values
    • Google Scholar

    More in this TOC Section

    • Compassionate Use of Remdesivir in Children With Severe COVID-19
    • Health Outcomes in Young Children Following Pertussis Vaccination During Pregnancy
    • Rural-Urban Differences in Changes and Effects of Tobacco 21 in Youth E-cigarette Use
    Show more Article

    Similar Articles

    Subjects

    • Genetics
      • Genetics
    • Journal Info
    • Editorial Board
    • Editorial Policies
    • Overview
    • Licensing Information
    • Authors/Reviewers
    • Author Guidelines
    • Submit My Manuscript
    • Open Access
    • Reviewer Guidelines
    • Librarians
    • Institutional Subscriptions
    • Usage Stats
    • Support
    • Contact Us
    • Subscribe
    • Resources
    • Media Kit
    • About
    • International Access
    • Terms of Use
    • Privacy Statement
    • FAQ
    • AAP.org
    • shopAAP
    • Follow American Academy of Pediatrics on Instagram
    • Visit American Academy of Pediatrics on Facebook
    • Follow American Academy of Pediatrics on Twitter
    • Follow American Academy of Pediatrics on Youtube
    • RSS
    American Academy of Pediatrics

    © 2021 American Academy of Pediatrics