Prenatal Diagnostic Testing Anxiety

QUESTION

Dear Experts,
My wife and I just got our triple blood screen back and we were told the test for Downs came back positive. The doctor set up an appointment for tomorrow for an ultrasound and possible amniocentesis. My wife and I have had two, very early miscarriages (fist month or so) and are scared to have the amnio. If it is healthy or not, we will go forward.

Are there any real benefits to knowing? We think being 17 weeks pregnant is a miracle after losing two and don't want to chance losing it. I've read that about 1 in 100 amnios result a miscarriage. Do you know the approximate odds that the blood test could be a false positive? We are terrified and could really use some information and maybe some hope that all may turn out normal.

Kindest Regards,
Tommy

ANSWER

Dear Tommy,
It's very scary to get back results from a screening measure that indicate a possible problem with your baby. Unfortunately, the triple blood screen has quite a high rate of false positives-research indicates that more than half the time, results indicate a problem where none exists.

A positive result does not mean that you must do invasive testing -- often the triple screen will be run again. That's why the triple blood screen is a screening measure, a way to decide whether further testing is indicated, and often, further testing shows that the baby is normal.

Even if you get another positive result, you can choose to do a high-level ultrasound (which provides quite a bit of diagnostic information) and decline the amniocentesis because you prefer to avoid the risk of complications from the amnio.

Sometimes, gathering more information gives families the opportunity to make a decision about how to proceed. If you intend to continue the pregnancy regardless of testing results, you can decide to forego any further testing, since results would not affect your decision.

Instead, think about what sorts of information would be helpful to you for the duration of the pregnancy. If having more specific information about your baby's condition will help reduce some of the uncertainties during the rest of the pregnancy, or help you plan for the future, then a more invasive test has value.

But no matter what, there will still be uncertainty -- no test can rule out every condition, syndrome, or birth defect. And even if your baby has Down's Syndrome, testing cannot tell exactly how serious that condition is for your child.

In general, it is important to keep in mind that prenatal diagnostic testing or heavy monitoring of an otherwise low-risk pregnancy can create unnecessary and undue stress in parents. Instead of constantly looking to uncover problems in the baby or pregnancy, focus on having the healthiest pregnancy possible, to give your baby the best start in life.

It can also help to take a wondering attitude about the outcome, and have faith that whatever happens, you'll find much to treasure, even if you meet with adversity.

We wish you the best,
-- Debbie and Mara
The Childbirth Complication Expert Team

Davis and Stein

Deborah L. Davis, Ph.D. and Mara Tesler Stein, Psy.D. are the authors of Parenting Your Premature Baby and Child: The Emotional Journey, a 2004 National Parenting Publications Awards "Gold Award" winner. They also collaborated on Parent: You and Your Baby in the NICU (2002), as part of the nationwide March of Dimes NICU Project. They.ve been invited to regularly contribute to Advances in Neonatal Care, a neonatal nursing journal; their first article appears in Spring 2005. They are the founding members of Partners in Perinatal and Pediatric Consulting, which promotes developmentally supportive care for babies and parents, as well as collaboration between families and health care professionals.

Dr. Stein is a clinical psychologist in private practice, specializing in the emotional aspects of coping with crisis and adjustment around pregnancy and parenting. She is regularly invited to lecture and give workshops on these issues throughout the country to conferences of physician and nursing groups, doulas, and lactation consultants. Since 1997, she has been consulting with organizations and providing training to health care providers, guiding their efforts to improve the level of psychological support and developmentally supportive care to families during and subsequent to perinatal crisis.

Dr. Davis is a developmental psychologist, researcher, and writer who specializes in perinatal and neonatal crisis, medical ethics, parental bereavement, parent education, and child development. Dr. Davis is the author of four books for bereaved parents, Empty Cradle, Broken Heart (Fulcrum, 1991; 1996), Loving and Letting Go (Centering, 1993; 2002), Fly Away Home (Centering, 2000) and Stillbirth, Yet Still Born (PILC, 2000). She is also on the Board of the Pregnancy Loss and Infant Death Alliance (PLIDA.org) and is regularly invited to write articles for professional periodicals and parent support materials.