Friday, January 21, 2011

Dr Brian Skotko on new pre-natal test for Down syndrome

Fellow at Children's Hospital of Boston, Dr Skotko is more than a pediatrician, he is an advocate for those who have Trisomy 21, or Down syndrome. He has given countless workshops on Down syndrome, and has a special point of view as the sibling of a sister with Ds. He has written several books including Common Threads, and  Fasten Your Seatbelt; A Crash Course  on Down Syndrome for brothers and sisters.
My daughters and I enjoyed his sibling workshop and found it very helpful to discuss the issues which arise in families with children like my Christina. I wrote about our experience here.
His thoughtful  and sensitive article about the strong possibility that all pregnant women will now use a new blood test for Down syndrome is excellent, as he raises the point that few medical students receive training about patients with special needs, and thus are ill prepared to give a mother with a positive test for Down syndrome. Yet, that is exactly what they will be doing. Dr Skotko says,
Currently, 92% of all women worldwide who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy. Based on those numbers, what does the future hold for the Down syndrome population once the new prenatal tests are available? The answer lies nestled in profoundly personal decisions, but still raises an important question, one that will be asked more and more frequently as other forms of prenatal testing come to the market: which forms of human genetic variation are valuable, and which are nott?
Its up to parents like me and professionals like Dr Skotko to spread the word that children with Down syndrome are a source of joy to a family which far suprasses the challenges in their lives. That is something no blood test will ever tell you!

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1 comment:

Lynn Wehner said...

Leticia, your closing sentence is spot-on ... and beautiful. Keep up the good work, lady!