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Down Syndrome Abstract
of the Month: Apr 2005

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Mothers of children with down syndrome reflect on their postnatal support.

Skotko B.
Pediatrics. 2005 Jan;115(1):64-77.

Harvard Medical School, Boston, Massachusetts, USA.

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OBJECTIVE: Since 1964, researchers have been examining the ways in which physicians deliver a postnatal diagnosis of Down syndrome (DS). Almost all of the studies, however, have been limited to reflections or very small sample sizes. The objective of this study was to document, in the most robust comprehensive way, the reflections of mothers in the United States who received diagnoses of DS for their children. METHODS: An 11-page survey was mailed to 2945 persons on the membership lists of 5 DS parent organizations. The survey gathered both quantitative and qualitative data with yes/no questions, open-ended questions, and a series of statements asking the mothers to rate their level of agreement on a Likert scale of 1 to 7. RESULTS: Of the 1250 responses (42.4%), 985 were from mothers who received postnatal diagnoses of DS for their children. The majority of these mothers reported being frightened or anxious after learning the diagnosis, and very few rated the overall experience as a positive one. Mothers reported that their physicians talked little about the positive aspects of DS and rarely provided enough up-to-date printed materials or telephone numbers of other parents with children with DS. Improvement has been made with time, albeit slowly. CONCLUSION: Mothers have called on physicians to improve the way in which postnatal diagnoses are delivered. Specific recommendations are offered.

My comments:

The majority of parents who have a baby with Down syndrome do not learn the diagnosis till after birth, either because there was no prenatal testing or the prenatal testing was wrong. For these parents, being told their new baby has DS is hardly ever a positive experience. I've known for years that obstetricians and pediatricians could do a better job at delivering the news, but this article really enforces my feelings that way too many of my physician colleagues are just jerks. This article is a long one, due in part to the author reprinting many comments made by mothers of children with DS about their experiences. Reading about doctors still using the word "mongoloid" and/or suggesting adoption to parents in the 1990s is galling to me, along with stories of obstetricians who blamed parents for not doing testing that might have allowed "early termination" and pediatricians who disappeared rather than give the bad news.

The real reason for my choosing this paper as this month's abstract, however, is to let parents know that something good has come from this paper. Last month (Mar 11, 2005), senators Kennedy and Brownback introduced a bill into the senate called the "Prenatally Diagnosed Condition Awareness Act." This bill (S. 609) states as its goal: "To amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions." This bill will establish a resource hot line and website for new parents of children with DS, establish a "clearinghouse" of medical information about people with DS, establish a network of national and local peer-support programs, and set up awareness and education programs for doctors who provide the diagnoses of such conditions to parents. This is a remarkable bill and you can read it in its entirety by going to thomas.loc.gov and searching for bill "S.609".

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