Choosing Not to Test for Down Syndrome

Monday, September 20, 2010

Amy Julia Becker is like a lot of mothers in America. She’s in her early thirties. She’s married. She has two kids, and a third on the way.

But here’s where she might be considered slightly different: of her two children, one has Down Syndrome. And when it comes to her current pregnancy, she and her husband have decided NOT to have the fetus screened for Down Syndrome.

Becker shares her story, and the reasons behind her choice.

Barbara Katz Rothman also joins the conversation. A professor of sociology at the City University of New York, she’s written extensively on issues of motherhood and pregnancy, including the book “The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood.”


Amy Julia Becker and Barbara Katz Rothman

Produced by:

Kristen Meinzer

Comments [12]

Katie R. from Senoia, Georgia

Thank you for sharing this story! I have 2 daughters, the youngest has Down Syndrome. When I went in for my 16 week ultrasound, the doctor found that she had a heart defect. After running more tests I was told that my daughter had a chromosome abnormality and that it would be best if I just aborted my pregnancy. I told the doctor that was not an option. From that point on I was pushed and pushed to have an amnio and to just end the pregnancy all together, but still I told them that was not an option! The doctor was so sure that my daughter would die at birth that she actually put a note on my record to NOT do a c-section if my baby went in distress during delivery. I was induced at 35 weeks after my daughter did not grow for 5 weeks (it was 3 days after my 22nd birthday). I was told several times to expect my baby to die during birth. Her heart stopped during the induction and the nurse just turned off the monitor... we demanded a c-section at that time and threatened lawsuit in order to get one. My daughter was succesfully delivered after 11 minutes of having her heartrate below 40 bpm by c-section, ALIVE! I am so very glad I did NOT take that doctor's "advice", as my daughter Auriana Faith is now 2 years old and loving life!! We rejoice with every step of progress she shows!! She has had a ton of medical problems, but we have fought through them and prayed through them and she is getting better and better every day! Trisomy 21 is not a death sentence and I believe that the 47th chromosome allows these individuals to see and feel things that the average person does not! They are truly angels on earth!!

Oct. 18 2010 10:43 AM
chris from nh

i have a daughter with down syndrome. she is going to be 8 yrs old in a week. we knew before she was born due to testing but chose to continue. yes it is a huge undertaking and the whole family has to make sacrifices. but these children are so happy and wonderful. she is very outgoing and finds friends everywhere she goes.

i find the hardest part is the school system and a real teacher that wants to take on such a task. my daughter is high functioning and has lots of potential but getting the help is hard when i need to work full time. she is my best little friend and she makes me smile every day. i believe she was sent to me for a reason. and she has taught me a lot about people and life.

Oct. 14 2010 08:09 PM
Madelynn Adkison

I thank God that there are people in this world who,while knowing full well that their unborn child has been diagnosed with Down Syndrome, go bravely forward, carrying what 'appears' to be a 'cross' in their lives. Their courage is then rewarded with a blessing beyond measure!

Sep. 22 2010 08:52 AM
Don King from Hollywood Fl

During my wife's second pregnancy we had one early screening, which indicated their may be a genetic disorder. After a discussion between us, we opted to not have amnio, since we had decided we would have this child and not terminate the pregnancy. Devon was born with Down Syndrome and is now 3 years old. He has been an unexpected blessing to our family. His purpose became clear afer his birth. To strengthen our family and to show us what real love was all about. He is a true delight. I wouldn't have missed this for the world.

Sep. 21 2010 09:54 AM
Elizabeth Ferguson

Thank you for airing this piece. It was not only helpful to hear from Dr. Rothman regarding the context for testing, but also to hear Amy Julias perspective as a person who has been delightfully surprised by who her daughter is becoming. I was also encouraged to read the previous posts of Jocelyn, Jose and Sabrina who are beginning this journey with courage and faith.

Sep. 20 2010 08:51 PM
I. from Toronto

I wish that the interviewer used more sensitive language. Use "people first language"...People with Down Syndrome (not Down children, Down Sydrome cousin etc.) are first and foremost, people first.

Sep. 20 2010 06:45 PM
Judith from Larchmont

If you had contacted a board certified genetic counselor as part of your presentation, you would have learned that our profession feels strongly that each couple has the right to decide how to proceed when a pregnancy is determined to be Down Syndrome. In my over 20 years as a genetic counselor, I met many couples and individuals who chose to terminate affected pregnancies, and a number of others who chose to continue. In every case, the individual's choice was respected and the couple was supported with whatever was needed, emotionally and intellectually.
Genetic testing is a great boon each year to thousands of pregnant women and couples, since by far the results are reassuring and the pregnancy continues with certian fears put to rest. For those couples who do not get good news, they can intervene if they choose to, or can prepare themselves beforehand for the birth of a child with challenges they never anticipated. That in itself is a benefit.

Sep. 20 2010 05:04 PM
Angel Beeson from Princeton, NJ

These are difficult questions. There doesn't seem to be an easy answer. I appreciate Amy Julia's perspective and the way she thoughtfully and gracefully approaches such topics.

Sep. 20 2010 12:52 PM
sifupaul from United Kingdom

Any screening test for pregnancy is scary for the couple, knowing what possible defects the baby could have. However, early detection of any abnormality means early correction. Medical point of views could really help a lot. Being diagnosed of bearing a child with any defect will be hard for the parents but you see prevention is better than cure. Without possible treatment for the diagnosis is the hardest thing to accept and taking the risk of pursuing the pregnancy is in your hands.

Sep. 20 2010 11:52 AM

I am just weeks away from delivering our first child who was diagnosed with Down syndrome via amnio around 16 weeks. We also had the typical early screening tests around 11 weeks and were given a higher probability of our baby having Down syndrome based on some early markers and my age. We were told to meet with a genetic counselor to learn more about the diagnostic tests so that we could make a decision about what to do with our pregnancy. We agonized over the decision, but ultimately decided to have the amnio because I wanted to prepare mentally, emotionally, etc. for our child, not because we were going to end the pregnancy. However, the medical community does present the options and results in a manner that termination is assumed. We had to be very clear with the medical team that we were NOT terminating and they needed to stop bringing it up and assuming that would be our decision.

Unfortunately all the information that was presented to us by various medical specialists was all the negatives and potential problems children with Down syndrome might have. There was no information about how people with Down syndrome have so much potential - they can go on to graduate from high school, go to college, get married, play sports, and so much more. I had to discover this information myself from families online who overwhelming say their children are a blessing and that they are more like typical kids than not, but our society, and especially the medical community, only focuses on the differences.

We know there will be difficult days ahead with therapies, doctor appointments and anticipated open heart surgery to correct her congenital heart defect. We have learned so much over these past five months about this process and are still glad we know ahead of time, instead of finding out at birth. We've had time to grieve the child we were expecting, and prepare for what we may face. We are excited to meet our daughter and watch her grow and develop and contribute to our family & community.

A thought that I've had after our experiences - What if couples could know ahead of time if their child was going to have autism, leukemia, learning disabilities, behavioral problems, etc? Would they be presented with the option to terminate because of the "potential" future problems and struggles they and their child may go through?

Sep. 20 2010 10:20 AM
Ed from Larchmont

No problem with tests as long as they are not used for child selection: this is your child.

Sep. 20 2010 08:04 AM
Jose & Sabrina Orozco from Portland, Oregon (very very early)

It's 3:24am at our home in Portland, Oregon. We're listening live to PIR online. I came across Ms. Becker's article in the New York Times and she captured my interest. She was 28 when she found out her 1st born ,daughter Penny, had Down Syndrome at birth, and my wife (28 also) & I are preganant now with our 1st to be born, little girl Lauren. This past Thursday we had our 22-week ultrasound and were advised that our little girl had a 20% risk for Down Syndrome because they noticed an absence of the Nasal Bone. Which several medical studies show as a marker for D.S. So we can relate to Ms. Becker. And I seek counsel in her words.

Our doctor immediately offered for us to proceed with an Amniocentesis. We ultimately agreed to do it, once our nerves settled and we could make a clear decision. This has been very hard for us. On one end, we wish we didn't know the risks and just go on enjoying our pregnancy as future parents for the 1st time, on the other end, is thanks to technology for giving us a "heads up" to be emotionally prepare for the arrival of our at-risk child. We opted for the extra $500 charge for FISH results, to get genetic testing for D.S. rushed. We expect results some time later today. We are on pins and needles, and expect this day to be the longest of our lives.

In summary: We see technology in the arena of pre-natal testing as both of blessing and a curse. Blessing in that we can prepare our family & friends to educate themselves on Down Syndrome. And a curse, because technology's "premonitions" can really take the joy away from pregnancy as a whole. Abortion becomes a question of values. How & When does one value Life. We for one value it at its core, conception. And we most certainly do not see it as a "Treatment" of any sort. Thank you for your time.

Sep. 20 2010 06:45 AM

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