Tuesday, September 06, 2011

Is is ethical to seek treatments for Down syndrome?

I write in response to this piece in Life News. by Effie Calderola.

As the mother of a nine year old girl with Down syndrome, and an advocate for the right to life of these lovely people, I would like to address Mrs Calderola's point; is it ethical to develop drugs to improve the intelligence of those with Down syndrome?
As Dr Gerard Nadal points out in his response to your post on Life News, it is the job of parents to improve their children's minds. From birth, we are our children's first teachers, first teaching language, social and self help skills like toileting and dressing. Hopefully, we teach them about the love of God for each of us regardless of our IQ or physical disabilities.  Then, we entrust our precious children to teachers, therapists and physicians who continue to help them prepare to participate in society. If we do our job well, our children will grow into responsible and productive members of society, fulfilling the particular vocation God has in mind for them. 

I am the first to assert that even a disabled person who is so helpless that she cannot even speak, but allows others to discover their own compassion through caring for her, is fulfilling a vital God-given mission in our world. This is a point of view often misunderstood by society but aptly illustrated in the life of saints like Blessed Mother Teresa. Tragically, because society misunderstands God's plan for the least able among us, they are marginalized, abused, neglected, and if the disability is discovered before they are born, aborted at a shocking rate of 92%. We as Catholics are duty bound to protect them, and that's where Dr Costa's research comes in. 

In 1958, Dr Jerome Lejeune, a French geneticist, discovered that Down syndrome is not caused by the mother's case of syphilis, as once commonly believed, but by a randomly assigned extra copy of the 21st chromosome. He hoped that this would improve their lives, because, until that time they were abandoned to waste away in institutions apart from the love of their families. Soon, people with Down syndrome were mainstreamed into society, and rights to their education were inscribed into law, however they were never truly accepted. Instead DrLejeune's discovery was used by the March of Dimes to develop pre-natal diagnoses using amniocentesis in the early 1960's. Today, when a pre-natal diagnosis of trisomy 21 or Down syndrome is given, there is a 92% abortion rate. Our laws of inclusion ring hollow in the face of this new eugenics, a voluntary purifying of the race from so called 'inferior' humans. I discuss this in this piece. 
In order to counteract this horrifying trend of rejecting these wonderful gifts of God, increasing numbers of advocates of people with trisomy 21 write,  as Mrs Calderola has so eloquently done, about the joys which individuals with Down syndrome have brought to them. I do this on my blog Cause of Our Joy. We emphasize the intrinsic gifts of love, joy and humor so often found in this unique population. We hope to encourage mothers to carry their children with trisomy 21 to term. 
But we must be honest, there has only been a slight dip in the number of abortions due to this outreach which intensified in 2007 when the American College of Obstetricians and Gynecologists recommended that all pregnant women, even those under 35,  be tested for Down syndrome. Soon a new blood test called Materni21 will be available, making this diagnosis possible as early as 8 weeks in pregnancy, without any risk of miscarriage. We in the Down syndrome community expect that a devastating increase in the number of abortions of babies with trisomy 21 will follow, causing such lovely faces to disappear forever from our world. It is a little known fact that although the percentage of pregnant women who bear children with Down syndrome increases with maternal age, most babies with trisomy 21 are born to younger women, due to the fact that young women have more children. There are nations like Denmark,  and New Zealand which are already recommending universal pre-natal testing be offered with the intention of saving their overburdened national health care systems the higher cost of caring for such infants. Countless women have testified that their doctors assumed that they would choose abortion when their child was diagnosed with trisomy 21 and often responded negatively when the mothers chose life for their child instead. They were left without support to carry their child to term, because of society's negative image of life with Down syndrome. 
Dr Lejeune, a close personal friend of Blessed Pope John Paul II, and a candidate for canonization himself, for his courageous defense of human life, knew this. He dedicated his entire life to finding a cure for trisomy 21, out of pure love for those he affectionately called his "little ones" who loved him and were heartbroken when cancer took him in 1994. He regretted not finding a cure before his death, for he knew the forces which were conspiring to eliminate them from this earth. He said, "I see only one way left to save them--and that is to cure them. The task is immense, but so is hope."
Dr Alberto Costa is one of 94 scientists in the USA who receive grants from the Jerome Lejeune Foundation, which continues the work of Dr Lejeune by funding research to cure Down syndrome around the world. I write about such research here. His concern for his daughter is to increase her intelligence, but also, like Dr Lejeune, to make sure that she sees other faces like hers in society. We would all be poorer if we no longer had people like Ethan. 

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