Saturday, March 17, 2012

Interview with Diane Grover

This is the ninth post in a series about the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding these tests, as well as bring a call to action. 


 Today I'm interviewing Diane Grover, founder of the IDSC for Life. 

"The International Down Syndrome Coalition for Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis."

Diane and her daughter, MaryEllen
Interview with Diane Grover

For those readers who are not yet aware of the IDSC for Life, can you tell us a bit about your organization?

Members of the IDSC for Life believe that every life is precious.

We are parents, grandparents, and loved ones of individuals who happen to have Down syndrome, standing alongside members who are self advocates.

Some of us were informed that our child had Down syndrome while we were expecting. Following that diagnosis, quite a few of us were pressured to abort our child. In spite of that pressure, thankfully, we went on to have our children.

Yet, there are a good number of us who were given encouragement by wonderful physicians, counselors, and other professionals. We were handed up to date information about Down syndrome when they told us our child’s diagnosis. Now, we want that same quality and caring experience for every family.

Along the way, we have also been contacted by those who lost their child to the pressure, to end their pregnancy. Many report they were given out of date information. Sadly, this happens when families are most vulnerable. The IDSC grieves for and with these families. They stand with us, on behalf, and in honor of their child, telling the world that every life is precious.

We are here to lend support and encouragement to families who are new to the diagnosis of Down syndrome.

We are here to share the adoption option with those who do not think they can raise a child with Down syndrome.

And we are here, for the individuals who happen to have Down syndrome, who are part of our coalition, and are proud to say ALL life is precious!


As the founder of IDSC for Life, what concerns do you have regarding these new tests?
Every day someone contacts me, telling me they felt pressured by a professional, friend, or loved one, to terminate their pregnancy. This is already occurring more than it should. With the new test, the results come back much earlier than previous testing, and my concern is that because the mother is so early in her pregnancy, it will be easier for her to make the decision to terminate the baby. We are advocating on this issue, so parents are prepared to welcome their child, instead of ending their life.


Right now this test is listed under the current administration's health care package as "preventive care." There are concerns that once implemented, this test will become mandatory. Do you share these concerns, and if so what do you feel would be wrong with mandated testing?

I do share these concerns. Mark Leach, contributing author at The Witherspoon Institute, has done a wonderful job of laying out what this will mean if this goes forward. Mandated testing has been documented, and it has always lead to an increase in termination rates of babies who have Down syndrome. California and New Zealand have both documented the results of a screening program, and neither is very favorable for the life of a child with Down syndrome.


What do you think the actually termination rate is for babies with Down syndrome?

Currently, there is mixed information about this statistic. Some are saying it is anywhere from 60%-80% in the United States. Others are saying it is around 90%. The IDSC is not concerned with this statistic, because for us, one child losing their life, due to inaccurate information and pressure on the parents to terminate, is one child too many. One woman who is pushed to terminate by professionals and those around her is one woman too many. Our members tell us daily about the pressure they were put under when they received a diagnosis for their child, during pregnancy.


What kind of resources and information do you think would be helpful for doctors to put into the hands of expectant parents, regarding a diagnosis of Down syndrome?

 Currently, there are wonderful resources out there, via Down Syndrome and their partners. They are thoughtful, up-to-date, and filled with hope. Also, parents are still reporting that professionals do not direct the parents to local Down syndrome Associations. Parent to parent connections work to help the new expectant parent become truly informed at what life is really like, instead of the out-dated information that is out there. I would like to see professionals take advantage of these resources, and help parents when they are most vulnerable.

And finally, my two favorite resources for new parents, which I think trumps them all, the books Gifts and Common Threads. I think those alone would make all the difference for any new family.


How can we as parents help medical professionals, as far as making these resources available? What steps can we take to get that information to practitioners, and is this something the IDSC is already trying to implement?

Yes, all of us as a community could be helping get this information into the hands of professionals. It takes effort on our part, but literally contacting your local physicians, knocking on their door with a basket of brownies and a book like Gifts would go miles! It will take the entire Down syndrome community making an effort. We suggest this to our members often. I think this will be the way that real change happens on the ground. Each of us can make a huge difference in each of our communities, that all the money in the world cannot do. This is one area each of us can do something about!


In closing, tell us about this following video, that you asked members of IDSC for Life to contribute to...
We were inspired by a video, in which mothers were asked if they could go back, and say something to themselves, before they became mothers, what would you say? So we decided we would ask all parents if they could go back before they had a baby, or adopted a baby with down syndrome, what would you say? Their responses were beyond anything we dreamed. This video, celebrating World Down Syndrome Day, summarizes and brings to light exactly why we celebrate this day! We hope that others will see that our lives are filled with love and joy, and all things that are good and amazing. 


Susan Cady Allred said...

LOVE it! Thank you for the post :) I will add a link to it on my blog as well :)

gretchen said...


gretchen said...


Wordshurtorheal said...

Thank you! This is so respectful and well done. I am excited to hear you also are advocates with and for people with Ds throughout this awesome journey of life. It all begins with Respect!
Rachel Douglas

Natalie Nelson said...

That video is beautiful.

lovemy3 said...

Thank you, Patti! I love that video!!!!

cara said...

LOVE this!!!! I had no idea this organization existed. I am SO encouraged. And I love the idea about reaching out to the local physicians in my area. That makes me feel like I can do something and put into action what I believe. Thank you for this idea.

On the video, I think the comment that said, "I had no idea that my greatest fear would become my greatest blessing," touched my heart the most. I felt that way too. I would not have thought that having a baby with down syndrome would have been my greatest fear. I always loved people with down syndrome, and I was drawn to them. But I think I was always relieved when I took the test while pregnant, and it came back negative. I probably did fear it. I didn't truly want a child with down syndrome. No, I would not have ever aborted my baby because I do believe all life is precious and from God. But I was happy to get negative results. Little did I know that we would be blessed beyond words with Benji. Little did I know that something I feared was my greatest blessing. I cannot shout enough how much this little boy blesses us and brings us SO much joy. He melts us all daily. I know it will continue to be that way his whole life. He will continue to bless us beyond words. He is not a burden, but a gift that we all cherish. He is our child, and he is special.

Deanna said...

LOVE! Thank you Diane...and thank you Patti!

Looking Up said...

Can't wait to share this!

Twilson9608 said...

Great job ladies! I loved it all, especially all of the photos.

Anonymous said...

Back in February 2003, I remember giving birth to my 4th and youngest daughter...this social worker came to my room, briefly talked to me, and handed me a book. I wasn't upset about my child having DS(found out in 5th month, pretty much), but while I was reading through this book, I felt like it was mostly negative. Glad IDSC is trying to change that! :)

Unknown said...

Awesome! Great information and I am adding this to my fav's to reference! Thank you for all these posts!

Unknown said...

Awesome! Great information and I am adding this to my fav's to reference! Thank you for all these posts!

Unknown said...

Awesome! Great information and I am adding this to my fav's to reference! Thank you for all these posts!

Unknown said...

Awesome! Great information and I am adding this to my fav's to reference! Thank you for all these posts!

Unknown said...

Awesome! Great information and I am adding this to my fav's to reference! Thank you for all these posts!

Lisa said...

crying at work!!! beautiful video & love the interview

Laura said...

I've so enjoyed your series on prenatal testing, Patti, but this post is my favorite:)