Prenatal Diagnoses: No Detecting the Joy Awaiting
Founder of Advocacy Group on Her Book "A Special Mother Is Born"By Kathleen Naab
CANTERBURY, Connecticut, DEC. 6, 2011 (Zenit.org).- A prenatal test released a few weeks ago is being hailed (in some quarters) as the end of Down syndrome. The implication, of course, is that if parents can discover more quickly and easily that their unborn child has Down, they will opt for abortion.
Statistics indicate that already in the vast majority of cases (more than nine out of 10), abortion is the route parents choose if tests currently available reveal their child has the condition. So an easier, earlier test could indeed mean the "end" -- not for Down syndrome itself, but for those who carry it.
Leticia Velasquez considers this a grave mistake. Velasquez is the co-founder of KIDS (Keep Infants with Down Syndrome), and is the mother of Christina, who has the condition.
Last month, Velasquez released "A Special Mother Is Born," which tells the story of 34 people -- mostly moms, and a few dads too -- who have embraced a "special-needs" child as a gift.
ZENIT spoke with Velasquez about her book and what these "special-needs" kids -- and their families -- need most.
ZENIT: You probably saw the news about a new test that will be the "end of Down syndrome." What are your comments on it?
Velasquez: The new test, MaterniT21, does pose a serious threat to the lives of many more unborn babies with Down syndrome. Consider the statistic in the Archives of Diseases in Childhood: Due to the trend of women having children later in life, between 1989-2005, it was expected that there would be a 15% increase in babies born with Down syndrome. Instead, there was a 34% decrease. This means there was an effective decrease of 49% in births of babies with Down syndrome in that period, due to prenatal testing and abortion. The abortion rate for babies diagnosed with Down syndrome is currently 92% in the U.S. and higher in Europe. Once MaterniT21, a non-invasive blood test which is done at 10 weeks, with 99% accuracy, is widely available, many more women will know if they are carrying a child with Down syndrome. If current trends persist, the abortion rate of these children will increase dramatically.
If the test is paid for by [President Barack Obama's health care reform package], as Health and Human Services Secretary [Kathleen] Sebelius recommended recently, most women will opt to take the test. If the 92% abortion rate holds steady, then we could expect that abortion number to climb precipitously. In addition, the idea of an abortion at 12 weeks is less abhorrent to women than an abortion at 22 weeks, when the results of the other tests are available.
In order to combat this trend, we have to focus on the opportunity that an early diagnosis presents to the medical community. No longer is a woman forced to make a rapid decision before a legal deadline of 24 weeks for late term abortion, so there is no need to rush such a critical life-or-death decision. Now the mother has plenty of time to learn about the true nature of life with Down syndrome: the amazing array of free services; medical treatments for common problems such as heart defects; the opportunities for education through college; and inclusion in everyday community activities.
An important survey published by Dr. Skotko in the American Journal of Medical Genetics shows a 99% rate of satisfaction experienced by families of people with Down syndrome, as well as a 99% rate of their children being happy with themselves. Researchers say within 10 years there will be a drug available that will make their learning and memory completely normal. There has never been a better time in history to be born with Down syndrome. Doctors owe their patients this type of up-to-date information, and it's my goal to make sure they have access to it.
We also have to re-evaluate what it means to be a parent. Are we looking to create a clone of ourselves or fulfill our own dreams through our children? Author Amy Julia Becker wrote "A Good and Perfect Gift" about having her daughter Penny with Down syndrome. She says in Time magazine,"I went to Princeton, I graduated Phi Beta Kappa, I have always been smart. I didn't realize how much I assumed I'd have a daughter just like me. Having Penny really challenged me to rethink what it means to be a whole and full human being."
ZENIT: Tell us about how you selected the profiles in your book. Were there many more to choose from than those who made it into "A Special Mother Is Born"?
Velasquez: While compiling stories for the book, I looked for parents who understood that their special-needs children were God's gifts to their families, and the larger community. Some were writers, and some were personal friends, but all of these people understood that they were called to an extraordinary commitment to parenthood. They understand that parenting such a child is to be a sign of contradiction to the world, which rejects these children at an increasing rate. They understand that the call to parent a special-needs child is a blessing: an invitation to grow in life-giving love. The most moving aspect of this is that these life-changing lessons were learned from children who could not express this verbally, they merely taught their families by their example of whole-hearted love.
Pope Benedict visited disabled youth in Madrid this summer and said, "Because the Son of God wanted freely to embrace suffering and death, we we are also capable of seeing God's image in the face of those who suffer. This preferential love of the Lord for the suffering helps us to see others more clearly and to give them, above and beyond their material demands, the look of love which they need."
ZENIT: Your book brought me to tears many times, but this collection is not an appeal to sentiments (or not only that). What is it? Or what do you hope it to be?
Velasquez: I want my readers to see the glory of a life fully lived, in the irresistible beauty of a life lived in the power of our faith. That is what makes these stories so profound: God's grace has been permitted to shine powerfully in the lives of these parents and their families by their surrender to his will. Once God has overtaken a heart, its capacity to love expands, and we who witness it say, "See how they love one another?" I hope to inspire those who fear such surrender -- and most of us do -- to take the plunge and trust God's will for us when love calls for sacrifice. After all, what is more challenging than the illness or death of a child?
ZENIT: Do you consider these stories only for Christians?
Velasquez: No, I have heard parents of other faiths discuss the extraordinary spiritual gifts of special-needs children. There is a film about a Jewish youth endowed with extraordinary spiritual gifts called "Praying With Lior." Many parents of special-needs children will recognize this about their own children, regardless of their faith tradition. I merely wanted to write a book focusing on the spiritual richness of our Catholic faith from the perspective "to whom much is given, much is expected."
ZENIT: Though not a resource manual, the book includes a list of resources at the end that is varied and extensive, even a board book for toddlers. Are resources what these families need most?
Velasquez: No, we need far more than resources. We need a society that welcomes our children with open arms, not one that questions their right to exist. I offer resources and inspirational stories to accompany parents in their journey of giving birth to a special-needs child, as they, and the authors of the book, strive to create this culture of life together. Many of my contributors offer their personal support to such parents.
ZENIT: So what would you say is the one thing that mothers of "special-needs" children need to know when faced with the "adverse" diagnosis?
Velasquez: I quote the co-founder of Keep Infants with Down Syndrome (KIDS), Eileen Haupt, who says in her story of her daughter Sadie, born with Down syndrome. "The doctors can tell you your child's diagnosis, but they cannot tell you the joy your child will bring you." Ninety nine percent of people with Down syndrome say they are happy with their lives; as a parent, having a happy child who gets to heaven is my goal. My daughter Christina at age 9, is already well on her way.