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You Are Not Alone

Wed, May 08, 2013 10:33 AM | Anonymous member (Administrator)

By Mark Leach, President of Down Syndrome Louisville, and an attorney with a Master’s in Bioethics

The following post is from Mark’s blog www.downsyndromeprenataltesting.com:


Liz Szabo USA Today Down syndrome prenatal testing Last Thursday, USA Today featured a front-age, below-the-fold story by Liz Szabo on the recent advances in Down syndrome prenatal testing. The report shares an important recommendation for those receiving a prenatal test result. 

Szabo’s article features the prenatal experience of Melanie McLaughlin. Melanie had a much-wanted pregnancy when she received a prenatal diagnosis of Down syndrome. Her physician offered her the option to terminate her pregnancy–as obstetricians are required to under ACOG practice guidelines following a prenatal diagnosis. Melanie was told she would have to hurry if she chose to terminate as she was running up against the 24-week deadline in Massachusetts when abortions can be performed.  She describes receiving the test result as “one of the loneliest times.”

Melanie’s experience is not rare. Actually, it is typical of those going through prenatal testing. While companies tout that their NIPS brand can be performed as early as 9 weeks, most women still receive confirmation through the second-trimester diagnostic test of amniocentesis. Amnio is not to be performed before 15 weeks, and results can take a week or more. States generally limit abortion on demand at 24-weeks or earlier. This results in Melanie’s experience being a common one for mothers receiving a prenatal diagnosis: dealing with what is regularly-described as a shocking diagnosis while the calendar creates pressure to make a decision on whether to terminate or not.

It is no wonder that Melanie describes this time as “one of the loneliest.” Sarah Cullen, the director of the Massachusetts Down Syndrome Congress’ (MDSC) First Call program, corroborated Melanie’s description. Drawing on her years of experience counseling new and expectant parents, Cullen describes the impact of receiving a positive test result: “You feel like the rug is pulled out from under you. You feel very heavy. You feel very, very alone.” But, then, note what Melanie did that addressed that feeling of loneliness.

Melanie and her husband reached out to MDSC’s First Call program so that they could meet with a family raising a child with Down syndrome. As Szabo reports, when Melanie met with the family, within minutes, the family’s daughter Anna, who has Down syndrome, was playing hide-and-seek with Melanie’s other children. Melanie describes that meeting as “the first time that I thought, maybe this isn’t the end of the world, that maybe it would be OK.”

Receiving a prenatal diagnosis is shocking, unexpected, and can leave the mother feeling very, very alone. Szabo’s report conveys this experience accurately in one of the nation’s most-widely circulated newspapers. It’s an experience more mothers are going to have as prenatal testing becomes accepted by more and more women. But, as the sub-headline states, Szabo’s article relays “What to do“.

Professional guidelines from ACOG, NSGC, and the American Academy of Pediatrics all recognize the value of being placed in contact with a family raising a child with Down syndrome before making a decision about a pregnancy. There are organizations throughout the country and likely one near you if you are receiving a prenatal diagnosis.

Cullen describes her program in a phrase that has become a mantra among parent support groups: they are “neither pro-life, nor pro-choice, but pro-information.” Representatives from around the country, including Cullen, said this exact same phrase at a breakout session led by representatives from the National Center on Prenatal & Postnatal Down Syndrome Resources at the 2013 Down Syndrome Affiliates in Action conference.

Melanie’s closing quotes are ones that expectant mothers need to hear when considering reaching out to their local parent support group before making what is likely the most significant medical decision of their lives.

Melanie decided to continue her pregnancy and her daughter, Gracie, is now five-years old. Ruth Faden, a bioethicist at Johns Hopkins, is quoted in the article explaining what studies have found to be true: “With parenting, you may think, ‘This is going to be beyond my ability to cope,’ [b]ut then the child is born and life is good–not perfect and maybe not according to plan–but good.” Melanie is quoted as agreeing with this conclusion:

If I could go back, I wish I could tell myself not to be so afraid. [Having a baby with Down syndrome] wasn’t a bad thing. It was a very good thing.”

Melanie is mindful that her sentiments reflect her own experience. She is now a volunteer for the MDSC’s First Call program and is conscientious in recognizing that, even though she had a prenatal diagnosis, “everyone is an individual and every situation is different” and, therefore, counsels families consistent with the “pro-information” mantra, not judging whatever decision they make.

However lonely a prenatal test result may make you feel, you are not alone. Hopefully your medical provider will abide by all the recommendations about prenatal testing, and will refer you to your local parent support organization so that you may meet another family. Making the offer to contact a family is a medical best practice and ethically required for informed decision making. Prenatal testing is about providing information and meeting with another family provides information on what a life with Down syndrome can be like.

This post originally appeared at www.downsyndromeprenataltesting.com

Mark will be presenting an open webinar through DSAIA on the latest in prenatal testing on Tuesday, May 11th at 1 pm Eastern/10 am Pacific.  To register, click on the following link:  Latest Update: New Prenatal Testing Recommendations

Sarah Cullen will be presenting on MDSC's First Call program in June.  More information can be found here: How To Build or Enhance Your Parents First Call Program

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

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