Monday, March 21, 2011 marked the 6th World Down Syndrome Day. It is a day that promotes activities and events to help garner awareness of what it means to live with Down syndrome, and how people with Down syndrome play an essential role in this world. Even with awareness, the number of people born with Down syndrome is slowly dwindling, not because doctors have found a cure, but because these people are not given the chance to be born.
A study released by Dr. Brian Skotko of Boston’s Children’s Hospital, estimates 92% of children diagnosed with Down syndrome while still in utero are aborted. This percentage could very well increase when a new, less invasive, prenatal blood test becomes available that could diagnose the condition as early as the first trimester.
In his research, Dr. Skotko estimates that between 1989 and 2005, 15% fewer children with Down syndrome were born, showing a 49% percent decrease between the expected number of Down syndrome births and those actually born. Dr. Skotko figured that accessibility to these tests earlier will allow a woman “to terminate without anyone ever knowing that she was pregnant,” if she so chooses. Current tests are rarely performed before 12 weeks and usually not until 18 weeks gestation. Skotko stated, “the numbers of elective terminations would likely increase, depending on a society’s laws, culture, and religious disease.” First of all, Down Syndrome is not a “disease.” Furthermore, it is not Down Syndrome that will be eradicated, like polio. It is the babies who have Down syndrome who will be eradicated.
Advancements in medical technologies have made it possible for researchers to identify what Down Syndrome is, and have increased the quality of life of those living with Down Syndrome. So would it not seem logical to give these children life? There are now better ways to prepare parents to equip a child with Down Syndrome with the tools they need to excel in life. Many get married and hold steady jobs. They do not see themselves as suffering from their condition, but rather happily embrace the opportunity they have been given.
In his research, Dr. Skotko posed the question of whether physicians are properly trained to give parents an accurate diagnosis of Down Syndrome. And if so, do they insert personal, rather than professional, opinions in the matter? In 2004, when 2,500 medical school deans, students, and residency directors were asked, 81% of medical students felt they were “not getting any clinical training regarding individuals with intellectual disabilities;” 58% of medical school deans said training was not a high priority.
In the only known study on this topic, 499 doctors and 1084 genetic professionals in the United States were asked whether they insert their own bias into a diagnosis. Most claim to adhere to the guidelines that advise doctors to make a non-directive diagnosis. Yet, 13% of doctors and 13% of genetic professionals admit to stressing the negative aspects of Down syndrome in the hope of pushing a pregnant woman to have a abortion; 10% claim to actively urge a woman to end her child’s life. However, 10% of doctors and two percent of genetic professionals say they will overemphasize the positive aspects of caring for a child with Down syndrome, while 4% of doctors actively urge mothers to continue their pregnancy. Dr. Skotko suggests doctors, students and other medical professionals be given a richer understanding of the condition than just those read in a medical textbook. Interacting with people who have Down syndrome would give many a different way of viewing the condition.
March 21 (3/21) is symbolic of the presence of the tripled 21st chromosome that causes Down syndrome. It is a day meant to educate the world of these very special people. The lives of these precious human beings are at stake; chances of these beautiful people being born are shrinking. By urging women to abort a child with Down syndrome, these doctors and genetic professionals are robbing not only that child the right to a full and wonderful life, they are robbing themselves of a world where love and compassion reign unconditionally from the life of a person with Down syndrome.