According to the CDC, 6,000 babies are born with Down Syndrome every year in the US De Graaf et al. (2015) estimated the live birth prevalence for DS in 2006-2010 at 12.6 per 10,000 (95% CI 12.4-12.8), with around 5,300 births annually. An estimated 3,100 DS elective pregnancy terminations were performed in the US during this period.
De Graaf et al. (2015) also identified regional and racial/ethnic differences in the prevalence of abortion following prenatal diagnosis in 12 states that maintain live birth data of DS births by racial/ethnic group. Here are some of the pregnancy termination rates by racial/ethnic groups and regions:
States and regions
In a recent article, DeGraff et al. (2021) estimated the live birth prevalence, actual live birth prevalence, reduction percentage because of selective terminations, and population prevalence for Down syndrome (DS) in European countries. Here are their estimates:
Choosing between terminating the pregnancy and sustaining it
Sustaining or terminating a pregnancy is a difficult choice for women who have been told they are carrying an infant with Down Syndrome. Many women are referred for counseling to assist in deciding to terminate the pregnancy or give birth. The prenatal testing can identify the fetus born with Down Syndrome; it does not identify the degree to which the infant will have significant health problems, including severe heart defects.
The following are some of the ways having children with Down syndrome impacts the socioeconomics of the mothers and families.
While the health risks and developmental delays are numerous with a person with Down Syndrome, there have been advances in helping these children learn and grow successfully.
Here are some of the passages:
One of the well-known, successful people with Down's Syndrome is Karen Gaffney. The family doctor told her parents she would be lucky to tie her shoes. Still, she graduated from high school and received an Associate of Science degree from Portland Community College. She also completed a relay swim of the English Channel in 2001 and swam across San Francisco Bay. She carried out a swim across the nine-mile span of Lake Tahoe then became the subject of the documentary Crossing Tahoe: A Swimmer's Dream. https://en.wikipedia.org/wiki/Karen_Gaffney
Legal and ethical issues
Any woman considering terminating a pregnancy with a fetal diagnosis of Down syndrome needs to consult her state's laws about abortion.
In 2017, the Ohio legislature passed a law prohibiting doctors from performing abortions based on a fetal diagnosis of Down syndrome. That law was blocked until April 2021, when the 6th US Circuit Court of Appeals reversed these two earlier decisions that blocked the enforcement.
In her 2015 article entitled Banning Abortion for Down Syndrome: Legal or ethical justification? Dr. Bonnie Steinbock, a Hastings Center Fellow and professor emeritus of philosophy at the University at Albany State University of New York, wrote these excerpts from an article in response to the proposed Ohio banning of abortions.
The Ohio legislature is expected to approve a bill this fall that would make it illegal for doctors to perform an abortion if the reason the woman wants a termination is to avoid having a baby with Down syndrome. Since prenatal tests for Down syndrome are done in the second, or even the first, trimester, such a law clearly violates Roe v. Wade, which said that women have a constitutional right to terminate their pregnancies until viability, which occurs in the third trimester. After viability, the court said, states may, if they choose, restrict or even prohibit abortions, unless such a restriction would threaten the woman's life or health…
In the real world, women have abortions because they are not willing to become mothers: not ever, not now, or not in this situation. That is as personal and intimate decision as one can make. Moreover, it is a decision that primarily affects the woman whose body it is. That is why she, not her husband and not the state, should be the one to make the decision…
No one should be bullied into having an abortion or, for that matter, into having prenatal testing. Prenatal testing should be offered to all pregnant women, but it should not be assumed that all women want it or that all women who have an affected fetus will choose abortion. All women who want more information about Down syndrome should get it, but it should not be forced on anyone who does not want it. And if she does decide to go ahead with the pregnancy, she should know that there are services available to her child and her family.
The entire article is available on https://www.thehastingscenter.org/banning-abortion-for-down-syndrome-legal-or-ethical-justification/
References:
de Graaf, G., Buckley, F. & Skotko, B.G. (2015). Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. Am J Med Genet. 167A(4), 756-67.
de Graaf, G., Buckley, F. & Skotko, B.G. (2021). Estimation of the number of people with Down syndrome in Europe. Eur J Hum Genet. 29, 402–410.
Goldwaser, T. & Klugman, S. (2018). Cell-free DNA for the detection of fetal aneuploidy. Fertil Steril. 109(2), 195-200.
Grosse, S. (2010). Sociodemographic characteristics of families of children with Down Syndrome and the economic impacts of child disability on families. International Review of Research in Mental Retardation. (30).257- 294.
https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html
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