Is it already happening? Tracking Down syndrome births so far in 2013.

Down syndrome birth referrals 2013In previous posts, I have written of a concern that others have shared about whether Down syndrome will disappear as prenatal testing advances. Down Syndrome Affiliates in Action (DSAIA) has posted a request of mine seeking groups to report their numbers of referrals for births so far in 2013.  This is prompted by one organization receiving only two birth referrals when they would ordinarily have welcomed at least 10 new babies at this same time in previous years. Click here to read the full post and please respond by July 15, 2013 with your number of birth referrals so far. By collecting this information, we can see whether it is already happening–whether those born with Down syndrome are already starting to disappear from our society.


  1. How does the US record birth numbers for Down syndrome? Is it done at a state level or country level? Most countries report data at this link, although reporting lags by a few years you can get data directly from the individual reporting countries. Countries who have ratified the CRPD would have to monitor the impact of screening and selective abortions on birth numbers.

    • Mike–as you suppose, it’s ad hoc. There is no central reporting. The CDC bases its incident rates off of select reports from distinct areas/states, but there is no national tracking. Hence, this approach of seeing what experience support groups around the nation are having.

  2. We have received no referrals in our area to date for 2013. For 2012, we had a total of six.

  3. valueall says:

    Well I have to say I’ve noticed a reduction in the number of babies born in our region. Noticed the same thing in the UK after I had my baby with DS there.

  4. We haven’t had any births reported for this year. We had two last year and three the year before that. We do live in a very rural area though.

  5. The number of women delaying motherhood is the reason for a 71% increase in the number of babies diagnosed with Down’s syndrome in the last two decades, according to research published today.

    There were 1,843 diagnoses of Down’s syndrome in England and Wales in 2007-2008 compared with 1,075 in 1989-1990.

    The risk of having a baby with Down’s syndrome is one in 940 for a woman aged 30. By the age of 40, the risk increases to one in 85.

    Despite the increased diagnoses, the number of babies born with Down’s syndrome has remained almost static because of improved screening and subsequent abortions, researchers at Queen Mary, University of London, found.

    Live births of Down’s babies fell from 752 to 743 –or 1.10 to 1.08 per 1,000 births – over the period of time covered by the research.

    If screening had not happened, the number of babies born with Down’s would have risen by 48%.

    This from The Guardian … worrying indeed …


  1. […] have asked for reports from local parent support organizations by next Monday, July 15, 2013, on the number of […]

  2. […] from around the country to report their number of birth referrals so far in 2013. This request was prompted by one group reporting a significant drop-off.A follow-up post wondered if this drop-off was due to […]

  3. […] a dramatic drop-off in referrals of new and expectant parents. This in turn led to a mid-year informal survey of groups around the country, which did report that indeed they are experiencing on average a […]

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