The CDC reports that as of 2018 in the United States, the expected number of births a woman would have over her lifetime is at a record low. But, according to recent reports, the number of babies with Down syndrome is not declining.
Referred to as the Total Fertility Rate or “TFR”, the CDC reports that the TFR is at its lowest since being tracked in 1940. The replacement TFR, i.e. the number of expected births per woman for a generation to replace itself is 2.1. The most current reported TFR from 2018 is at a record low of 1.73. Moreover, aside from 2006 and 2007, the TFR has been below the replacement rate for much of Generation X and most of Gen Y & Z.
However, according to recent reports received this week, the number of births of children with Down syndrome has not declined, but in at least one area, it has returned to the average expected number of births.
Beginning in 2008, I have moderated a national telephone conference for individuals involved in medical outreach and new and expectant parent support for local Down syndrome support organizations. In 2020, the call entered its twelfth year.
The call is referred to as the Informed Decision Making Task Force or “IDM TF.” It began as one of a series of Task Forces established at the second Down Syndrome Affiliates in Action (DSAIA) conference and remains the longest, continuously operating Task Force.
Participants include regulars who provide updates about DSAIA, the National Center of Prenatal & Postnatal Resources (where I serve as the bioethics specialist), the National Down Syndrome Adoption Network, and staff and volunteers from local parent support organizations across the nation.
On the inaugural call for 2020, several of the participants shared their birth statistics from the previous years. None reported a decline, one reported a marked increase in the number of parents they supported with prenatal test results, and my local organization in Louisville reported that its birth numbers had rebounded from a worrisome low number within the past two years to its typically average number of births per year in 2019.
These reports from local organizations defied my own expectations when the IDM TF launched.
The year 2008 was just one year after the American College of Obstetricians & Gynecologists (ACOG) changed its recommendations from only offering prenatal genetic testing to women of Advanced Maternal Age (AMA), to offering it to all pregnant women. At the beginning of the 2010’s, cell free DNA screening was introduced with promises of greater accuracy and safety. These two developments would lead most to expect fewer children with Down syndrome being born.
But that is not what has happened in certain parts of the United States.
To be sure, in coastal cosmopolitan areas, e.g. Los Angeles and New York, it is expected that there has been a reduction in the number of lives being born with Down syndrome. But, in the heartland, with more conservative, traditional communities, support organizations are not reporting a drastic decrease in the number of new members born into their community each year.
There has yet to be a scientific study to explain why this is, “this” being that the number of children with Down syndrome in the United States has yet to experience the significant, and tragic, decreases experienced in other first world nations like Denmark, Iceland, and Japan.
But, for those participants on the monthly IDM TF call, we would like to believe that our efforts have contributed in part to increasing patients’ understanding of both what a life can be like for someone with Down syndrome and the wide array of support services available to families raising children with Down syndrome.
The CDC report is not exactly contradictory with the continued number of babies being born with Down syndrome. While the overall number of children that can be expected from each woman has hit a record low, it is also true that women are waiting later in life to begin being mothers. With the correlation of maternal age and a greater chance for having a child with Down syndrome, the CDC report actually may explain a factor as to why the number of births of children with Down syndrome have not yet drastically declined.
Regardless, those who join the monthly call of the IDM TF are going to continue to engage in effective medical outreach, providing the accurate, written information about living a life with Down syndrome and the available support organizations. We will continue to do so because it is what professional medical guidelines recommend; in a growing number of states, the law recognizes it is needed and required; and, most importantly, it is the truth.
As mentioned, the IDM TF is an outgrowth of the Down Syndrome Affiliates in Action, which holds its annual conference at the end of February. If you or someone from your local support organization would like to attend, you can find out more at this link.
And, if you or someone from your local support organization are interested in joining the IDM TF, leave a comment. I moderate all comments and can add your interested party’s email to the monthly update. If you do not want your comment shared publicly, just mention that and it will remain hidden.
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