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New survey says life with Down syndrome is good; so why the 92% abortion rate?

Posted Sep 21 2011 11:46am

We who love someone with Down syndrome know this. Life is good. Challenges abound, but the rewards are greater, and far outweigh the sacrifices. When I feel those soft little arms tight around my neck, I forget how long it takes her to get dressed, eat dinner, and walk into school. My heart melts and I am thankful God chose me to raise a child like Christina.
But the common perception is that the difficulties outpace the joys, or there wouldn't be a 92% abortion rate. Thank you Dr Brian Skotko of Children's Medical Center, Boston, for compiling this data which proves that the public perception of life with Down syndrome is wrong. Now we who love these special people need to bring this survey out of hiding into the public eye, to help change hearts. To save lives. 
Leticia & Christina photo by Shana Sureck
Share this post  on Facebook and Twitter  by clicking the Share button on the bottom of the post. Discuss it at your next school meeting, coffee house visit, over the fence chat or TV spot. Write about it to the editor of your local newspaper, or call into radio shows discussing disabilities. Get the good news out, and we'll see fewer abortions of these lovely individuals who have so much to offer our society. 
BOSTON, Sept. 21, 2011 /PRNewswire via COMTEX/ -- Survey results may inform decisions about prenatal testing
Three related surveys led by a physician at Children's Hospital Boston suggest that the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves. The results, published in three reports in the October issue of the American Journal of Medical Genetics, may serve to inform expectant parents and clinicians providing prenatal care.
"New prenatal tests for Down syndrome are set to come out as early as the end of this year," says Brian Skotko, MD, MPP, a clinical fellow in genetics at Children's Hospital Boston. "Many more women will then learn about the diagnosis prenatally and will need to grapple with very personal pregnancy options. In previous surveys, mothers have reported receiving inaccurate, incomplete and occasionally offensive information about Down syndrome from their healthcare providers."Skotko and collaborators Susan Levine, MA, CSW, of Family Resource Associates (Shrewsbury, NJ) and Richard Goldstein, MD, of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, sent surveys to 4,924 households on the mailing lists of six nonprofit Down syndrome organizations around the country. The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also included some open-ended questions.The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent. Its findings:99 percent of parent/guardians said they loved their child with Down syndrome79 percent felt their outlook on life was more positive because of their child5 percent felt embarrassed by their child4 percent regretted having their child.The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:94 percent expressed feelings of pride about their sibling7 percent felt embarrassed by their sibling4 percent would "trade their sibling in" for another88 percent said they felt they were better people because of their sibling with Down syndromeOf siblings aged 9-11:97 percent said they loved their sibling90 percent felt their friends are comfortable around their siblingThe third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:99 percent said they were happy with their lives97 percent liked who they are96 percent liked how they look86 percent indicated they could make friends easily4 percent expressed sadness about their life."As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome," says co-author Levine. "And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable."In open-ended questions, parents reported learning a variety of life lessons - the top five being: personal self-growth, patience, acceptance/respect, love, joy. Asked what they would tell other prospective parents of a child with Down syndrome, the top responses fell into these categories:You will experience joy/rewardsThere will be struggles/challengesYou will experience loveImportant to identify good support group/resourcesChildren with Down syndrome are more alike than different from typically developing children.Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.Respondents with Down syndrome most often gave these kinds of messages for parents:Love your baby/your baby loves youLife is good/happy to be alive/positiveDon't worry/it's okay.Their main messages for doctors were:Life is good/I'm happy to be alive/positivePlease take care of our medical needsPlease give information to parents about school options for people with Down syndromeValue us/we're okay.The researchers acknowledge that the surveys are subject to selection bias, since members of nonprofit Down syndrome groups may not be representative of the general population of Down syndrome families; respondents were largely white and middle to upper class. There is currently no population-based registry for people with Down syndrome."Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents," says co-author Goldstein. "What has been missing has been the perspective of those living with Down syndrome. This study now provides the largest and most comprehensive portrait of life with Down syndrome to date."The studies were supported by grants from the Tim White Foundation, the Fred Lovejoy House-staff Research and Education Fund, and the Joel and Barbara Alpert Endowment for the Children of the City.Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Children's, visit: http://vectorblog.org .CONTACT: Keri Stedman Children's Hospital Boston             617-919-3110      keri.stedman@childrens.harvard.eduSOURCE Children's Hospital BostonCopyright (C) 2011 PR Newswire. All rights reserved 
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