Down Syndrome: Still a Social Stigma

ABSTRACT

Down Syndrome (DS) is a commonly occurring chromosomal abnormality. The incidence increases with advancing maternal age over 35 years. Over the last three decades, tremendous progress has been made in the medical and surgical treatment of these infants. Nationally, a great deal of resources are allocated to DS infants to improve their growth and development. Yet, the perception remains that the DS infant is still not openly accepted by parents and society, as illustrated by the presented cases. This lack of acceptance creates many complex ethical challenges in treating such babies, starting with fetal diagnosis of the disorder in the womb and moving through early stages after the birth of the baby. We argue that health professionals have the responsibility to help make public attitudes more accepting of Down Syndrome. Professionals should encourage social and community involvement of these children. The National Association for Down Syndrome should be contacted periodically to promote activities to enhance public awareness. To the end of greater acceptance, we suggest a ritual at birth that might improve the acceptance of the DS child into the family and the community and hence help improve social attitudes toward Down Syndrome.

KEYWORD

Down Syndrome - infant - medical ethics - social attitudes

REFERENCES

• 1 Hook E B, Cross P K, Schreivemachers D M. Chromosomal abnormality rates at amniocentesis and in live-born infants.  JAMA . 1983;  249 2034
• 2 Recognizable patterns ofRecognizable patterns of malformation: chromosomal abnormality syndromes-Down Syndrome In: Jones KL ed.. Smith's Recognizable Patterns of Human Malformation. 5th ed. . Philadelphia: W.B. Saunders Company  1997;  8-13
• 3 Emde R N, Brown C. Adaptation to the birth of a Down's Syndrome infant: grieving maternal attachment.  J Am Acad Child Psychiatry . 1978;  17 299-323
• 4 Parks R M. Parental reactions to the birth of a handicapped child.  Health Soc Work . 1977;  2 51-66
• 5 Gath A. Parental reactions to loss disappointment the diagnosis of Down's Syndrome.  Dev Med Child Neurol . 1985;  27 392-400
• 6 Elkins T E, Brown D. An approach to Down Syndrome in light of infant Doe.  Issues Law Med . 1986;  1 419-440
• 7 Haveman M H, Tamar G VB, Reijnerds, R. Differences in service needs time demands caregiving burden among parents of persons with mental retardation across the life cycle.  Family Relat . 1997;  46 417-425
• 8 Carr J H. Down's Syndrome: Children Growing Up.  Cambridge UK: Cambridge University Press 1995: 1-14
• 9 Merrick J. Aspects of Down Syndrome.  Int J Adolescent Med Health . 2000;  12 5-17
• 10 Nakamura E, Tanaka S. Biological ages of adult men women with Down's Syndrome its changes with ageing.  Mech Ageing Dev . 1998;  105 89-103
• 11 Hutchin T, Martin L, Prasher V, Sinclair A J. Serum hyaluronic acid in Down's Syndrome.  Mech Ageing Dev . 1998;  106 155-160
• 12 Katada A, Hasegawa S, Ohira D, Kumagai T, Harashima T, Ozaki H, Suzuki H. On chronological changes in the basic EEG rhythm in persons with Down Syndrome-with special reference to slowing of alpha waves.  Brain Dev . 2000;  22 224-229
• 13 Thompson S BN. The central executive system in people with Down's Syndrome dementia.  Clin Gerontol . 2000;  21 3-32
• 14 Devenny D A, Krinsky-McHale S J, Sersen G, Silverman W P. Sequence of cognitive decline dementia in adults with Down's Syndrome.  J Intellect Disabil Res . 2000;  44 654-665
• 15 Cunningham G F, MacDonald P C, Gant N F, LeVeno K J, Gilstrap III C L, Hankins G DV, Clark S I. Prenatal diagnosis invasive techniques to monitor the fetus. In: Williams Obstetrics 20th ed. Stamford CT: Appleton & Lange 1997: 925
• 16 Snijders R JM, Noble P, Sebire N, Souka A, Nicolaides K H. UK multi-centre project on assessment of risk of trisomy 21 by maternal agefetal>nuchal-translucency thickness at 10-14 weeks of gestation.  Lancet . 1998;  352 343-346
• 17 Scioscia A L, Budorick N E, Moore T R. Utility of minor ultrasonographic markers in the prediction of abnormal fetal karyotype at a prenatal diagnostic center.  Am J Obstet Gynecol . 1999;  181 898-903
• 18 Benacerraf B. Should sonographic screening for Down Syndrome be applied to low risk women?.  Ultrasound Obstet Gynecol . 2000;  15 451-455
• 19 Vintzileos A M, Campbell W E, Guzman E R, Smulian J C, McLean D A, Ananth C V. Second-trimester ultrasound markers for detection of trisomy 21: which markers are best?.  Obstet Gynecol . 1997;  89 941-944
• 20 Newberger D S. Down Syndrome: prenatal risk assessment diagnosis.  Am Fam Physician . 2000;  62 825-838
• 21 Steele J. Prenatal diagnosis Down Syndrome-Part 2: possible effects.  Ment Handicap Res . 1993;  6 57-69
• 22 Hayes A, Batshaw M L. Down Syndrome.  Pediatr Clin North Am . 1993;  40 523-535
• 23 Julian-Reynier C, Aurran Y, Dumaret A, Maron A, Chabal F, Girand F, Ayme S. Attitudes towards Down's Syndrome: follow-up of a cohort of 280 cases.  J Med Genet . 1995;  32 597-599
• 24 NADS website 2000. Available at: www.nads.org . 
• 25 NDSC website 2000. Available at: www.ndsccenter.org . 
• 26 NDSS website 2000. Available at: www.ndss.org . 
• 27 Murphy A, Pueschel S M. Early intervention with families of newborns with Down's Syndrome.  Matern Child Nurs J . 1975;  4 1-7
• 28 Pueschel S M. Changes of counseling practices at the birth of a child with Down Syndrome.  Appl Res Ment Retardation . 1985;  6 99-108
• 29 Quines L, Rutter D R. First diagnosis of severe mental physical disability: a study of doctor-parent communication.  J Child Psychol Psychiatry . 1994;  35 1273-1287
• 30 Calvin S E. When should we be sorry? An obstetrician's dilemma.  Am J Perinatol . 1993;  10 258-259
• 31 Damrosch S P, Perry L A. Self-reported adjustment chronic sorrow coping of parents of children with Down syndrome.  Nurs Res . 1989;  38 25-29
• 32 Pueschel S M. A Parent's Guide to Down Syndrome: Toward a Brighter Future.  Baltimore: P.H. Brookes 1990: 13-15
• 33 Clark J B. Very special people.  Kiplinger's Personal Finance Magazine April . 2000;  54 90
• 34 Bernstein N. What would you have done?. Health. March 2001: 190
• 35 Cooley W C. Supporting the family of the newborn with Down Syndrome.  Compr Ther . 1995;  19 111-115
• 36 Singer P. How Are We to Live?. Ethics in an Age of Self-Interest Amherst NY: Prometheus Books 1995