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Christopher Cassidy

February 21, 2013  3:15pm

I realize I already commented, but I learned something last night that should give every one of us Christians pause. I'm on the board of a dads group - fathers of children with Down syndrome. At our monthly meeting last night, our guest was a geneticist & MD who heads up a new DS clinic at Mass General Hospital in Boston. This man has a sister with DS & has devoted his life to DS, from helping people with DS to live fuller lives, to educating doctors, nurses and ultrasound techs on how to properly deliver a prenatal diagnosis of DS, using the latest scientific info so parents can make informed decisions (this is a HUGE problem, as most parents report receiving extremely outdated info about DS, as well as inordinate pressure to abort). 2012 was the first year of the new testing discussed here, and out of over 10,000 births at MGH last year, only TWO children with DS were born (the incidence of DS is about 1 in 700 births). This isn't "curing" DS - it's a holocaust. God help us.

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Karen Fahel

February 08, 2013  6:25pm

My husband and I opted for amnio for both pregnancies, but we did it for a lot of reasons. First, as my doctor put it, my "advanced maternal age" (38 with our 1st, 40 with our 2nd) raised the possibility of problems. If there were any problems, we wanted to be prepared, get educated, find out everything we would need to raise them up right. Then we really wanted to find out the gender; we were married for 17 years before our first was born (NOT our choice), and we didn't want to wait any longer than necessary! However, when the doctor mentioned the amnio and our "choices", my husband just about hit the ceiling...then almost hit the doctor! After all the years we waited for a child, we were just going to throw it away??? For our second, we went to a different doctor, but we told her that, although we want the amnio, don't you DARE talk about "options" or "choices"! It turned out unneccessary; both girls work above their grade levels, are hardly ever sick, are outgoing & love God.

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Christopher Cassidy

February 08, 2013  5:19pm

I agree w/ the comments on the lack of a father's perspective in this article, it's very unfortunate. To Lesley Miller's comment, Down syndrome is a spontaneous mutation at the moment of conception, not something that can be triggered by your husband having taken a certain medication prior to conception. Also, referring to it as "Downs" is not correct current terminology, & is actually considered offensive to many in the Down syndrome community (I hate political correctness, but..). My wife & I have a beautiful 5 year old daughter with Down syndrome, and she is a joy, & a miracle. She is also highly intelligent, sweet, genuinely funny, & oftentimes fresh beyond belief. She's in an integrated full-day kindergarten, with only a few hours of special ed a week. Her life is an amazing testimony of the goodness and grace of God, & she has touched many lives in our families, our church, her school, & the larger community. Jeremiah 29:11 is just as much for her as it is for you and me.

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Mark Leach

February 06, 2013  12:40pm

Amy Julia--thank you for your column, and particularly for sharing Dr. Thorpe's comments on how ultrasound should identify any condition needing emergent care. A point of clarification regarding the newest type of prenatal testing, called Non-Invasive Prenatal Testing (NIPT). NIPT remains only a highly accurate screening test. Professional committee opinions emphasize that NIPT, like those tests offered by Sequenom, Verinata, Ariosa, and Natera, are not diagnostic, and patients should be referred for genetic counseling and offered diagnostic testing following a positive NIPT result. More on this here: http://www.downsyndromeprenataltesting.com/breaking-news-acog-issues-new-gu idelines-on-nipt/. At the same time, those companies are striving to achieve diagnostic status, so this point of clarification may be rendered moot as science advances. From a Christian perspective, I've always found the wisdom of 1 Cor 12 & John 9 helps to inform a Down syndrome diagnosis.

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Nancy Lee

February 05, 2013  1:21pm

Ouch -- I have to agree with commenter Kathi, who noticed the complete absence of consideration for/inclusion of men in this article (and even its subtitle). Husbands and fathers are (hopefully) just as involved and concerned with the decisions about their children's health and life, and deserve to be present in this article.

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Tim Fall

February 04, 2013  12:01pm

I also see prenatal testing as an issue of stewardship, Amy Julia. It may not be the best way for each family to care for the children God is giving them, but it is certainly one way to prepare ourselves as parents and a decision that should be left to the parents in their relationship with God, each other, and the child. Cheers, Tim (timfall.wordpress.com)

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Lesley Miller

February 04, 2013  10:50am

Amy Julia: Thank you for your well researched words. Coupled with your own experience raising a child with Downs syndrome, your authority on the subject carries a lot of weight. I'm so glad you are writing about this topic! I am pregnant with our second child, and with both pregnancies we've chosen to do the California prenatal screening for chromosomal abnormalities. With our first we didn't give it much thought, but with our second the decision came because we may be at higher risk for a child with Downs due to medication my husband received this last year. While we know most of our Christian friends are opting out of these screenings, for us we fall into the group of those who want to be mentally prepared, if possible, should we have a child with a chromosomal diagnosis. For me, like you mentioned, I think I'd like to have some time to grieve what that diagnosis might mean for a child so that upon his/her arrival I could fully celebrate.

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