Research Article

Having a son or daughter with Down syndrome: Perspectives from mothers and fathers†‡

  1. Brian G. Skotko M.D., M.P.P.1,§,*,
  2. Susan P. Levine2,§,
  3. Richard Goldstein3

Article first published online: 13 SEP 2011

DOI: 10.1002/ajmg.a.34293

Issue

American Journal of Medical Genetics Part A

American Journal of Medical Genetics Part A

Volume 155, Issue 10, pages 2335–2347, October 2011

Additional Information

How to Cite

Skotko, B. G., Levine, S. P. and Goldstein, R. (2011), Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. Am. J. Med. Genet., 155: 2335–2347. doi: 10.1002/ajmg.a.34293

Author Information

  1. 1

    Division of Genetics, Department of Medicine, Children's Hospital Boston, Boston, Massachusetts

  2. 2

    Family Resource Associates, Inc., Shrewsbury, New Jersey

  3. 3

    Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts

  1. §

    Co-first authors.

*Children's Hospital Boston, 300 Longwood Avenue, Hunnewell 5, Boston, MA 02115.

  1. †

    Brian G. Skotko and Susan P. Levine are

  2. ‡

    How to Cite this Article: Skotko BG, Levine SP, Goldstein R. 2011. Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. Am J Med Genet Part A 155:2335–2347.

  3. §

    Co-first authors.

Publication History

  1. Issue published online: 20 SEP 2011
  2. Article first published online: 13 SEP 2011
  3. Manuscript Accepted: 29 JUL 2011
  4. Manuscript Received: 17 MAR 2011

Funded by

  • Tim White Foundation
  • Fred Lovejoy House-Staff Research and Education Fund
  • Joel and Barbara Alpert Endowment for the Children of the City

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Keywords:

  • Down syndrome;
  • prenatal diagnosis;
  • parent;
  • attitudes;
  • trisomy 21

Abstract

This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride. © 2011 Wiley-Liss, Inc.

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