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(June 2, 2007)
Evolution is based on a concept that "nature will not expend energy on things that do not enhance the chance of survival". Because of this, it is reasonable to ask the question, "why are there so many babies born with birth defects such as Down syndrome"? What is it about children who have this condition that would help explain why they continue to be born? Currently there are 350,000 individuals in America with Down syndrome, and this number increases each year with the birth of approximately 5,500 children born with the syndrome. Many claim that children with Down syndrome are nature's gift to human kind to help teach us about true love. Children with Down syndrome have an inherent and unique capacity to love and be loved and it is this fact, perhaps, that helps explain their continued presence in our society. Since love is a necessary element of survival, we may have an answer to our question. This past January, the American College of Obstetricians and Gynecologists issued an opinion that states all women, regardless of age, should be offered genetic screening in order to diagnose a child with Down syndrome. In the past, such screening was only routinely recommended for women over the age of 35, however, because of new testing methodology which has high sensitivity to make a diagnosis of Down syndrome; all women will now be offered testing. While I have no problem with this new recommendation, I am concerned about the 50,000 Obstetricians and Gynecologists in this country who may not adequately counsel patients about what having a child with Down syndrome entails. In a recent survey of medical school deans, students and residency directors, over 80% reported that they "are not getting any clinical training regarding individuals with intellectual disabilities." In a recent questionnaire of 532 Obstetricians, 45% claimed that their residency training regarding prenatal diagnosis was "barely adequate or nonexistent" and only about one in four felt properly qualified to counsel patients for screening diagnosis and testing. Appropriate prenatal genetic counseling includes discussion concerning risks versus benefits of screening and testing and would include helping patients understand what bringing a child into this world with Down syndrome would mean to the child and family. Many doctors either do not have the time to adequately give full informed consent or may just not know and understand the realities of raising a child with the syndrome. I fell into the latter category four years ago with the birth of my grandson, Seth, who was born with Down syndrome. Since then I have learned a great deal of what life is like for these children and adults. Although there are considerable challenges that could be considered negative, there are also many positive ones as well. Many parents who are raising children with Down syndrome explain that while mild to moderate mental retardation and other medical and social challenges do exist, there is a richness to their children's lives that is often not appreciated. These parents feel their child offers love, affection, happiness, laughter and joy, as well as teach compassion and acceptance. In most instances their child can be included or mainstreamed in public schools, form friendships, accomplish goals and obtain employment. While independent living is not common, in many cases, they often lead quite fulfilling lives. Average life expectancy has been reported as high as 55 to 60 years. Our society is on the verge of being able to diagnose hundreds of human conditions and disorders. This will place enormous pressure on doctors to explain complex issues to patients. If we are not able to give appropriate and complete risk verses benefit information on screening and testing for Down syndrome, we will have failed our patients. Furthermore if we fail to include the many positive aspects of life with Down syndrome we will have revealed our failure to properly understand the evolutionary process. |
