01.07.06
Down Syndrome Screening
It is all over the media, screening methods for Down Syndrome and other congenital abnormalities can now be done as early as 11 weeks, though the accuracy is less than 85%. What isn’t reported is the toll this information will have. What isn’t covered is that 85% of babies after prenatal screening only terminate their pregnancies when the screen shows positive for Down Syndrome. Nevermind that previous and current screening methods have a high false-positive rate.
This week the CDC released a report on live birth outcomes showing that Down Syndrome is more common that previously thought, 1:733 compared to previous estimates of 1:800-1000. Live birth outcomes. So what does that make the true statistics when we previously noted that 85% of babies suspected of having Down Syndrome are aborted?
I have a personal story about this. Two of my cousins were pregnant at the same time. Both were screened with both AFP and ultrasound (several timesfor different reasons) during their pregnancies. Cousin M was told she would have a son and that he had Down Syndrome and had subsequent ultrasounds to confirm this. Her and her husband were strongly urged to abort their son, they chose not to and prepared for their son’s birth. Cousin K was screened several times because of her having HELLP during her first pregnancy. She chose not to know the sex of her child and also eagerly anticipated her baby’s birth. Cousin K went into labour early and finding her baby breech, she underwent a caesarean for the delivery of her daughter… who had a major heart defect, slanted eyes and symian creases in her hands. While awaiting heart surgery, Cousin M had her son, a healthy normal boy. During Cousin K wait for her daughter’s surgery, genetic testing was done and indeed her daughter does have Down Syndrome.
What scares me most is the sheer number of babies who will be aborted with or without Down Syndrome and other genetic anomalies, and the number of babies who will be aborted for no reason other than a false postive test result with no followup. How does positive prenatal genetic testing results effect your practice?
Absentia said,
October 7, 2006 at 7:00 pm
I think very few people terminate pregnancies based on screening tests – and if they do, they’ve been badly informed by their doctor and/or genetic counselor. As you probably know, screening tests do NOT give a positive/negative result – only a CVS or an amnio will provide that information.
Having been involved for over a year in a support group for women who’ve terminated a pregnancy for medical reasons, I have dealt with over 400 women who’ve been through this. None of them terminated based on a screening test. They had amnios and CVS procedures and every test imaginable, hoping that the results were wrong. This decision is not made lightly.
I won’t comment on your belief that you are somehow qualified to pass judgement on women who terminate pregnancies with chromosomal abnormalities. I believe that women are capable of making their own decisions. If you disagree with abortion for medical reasons, you are free to carry all your pregnancies to term.
Amber Watts said,
February 6, 2007 at 11:31 pm
I am a 28 year old mother of a 5 year old with down syndrome. I choose not to have any testing done because I did not think it could happen to me and even if it did I would never abort. I found out at birth that my son probably had downs and genetic testing later proved this correct. Family members were all upset, until they saw the baby. He was so cute and precious, they all fell in love with him immeadiately. I feel very strongly that I have been hand picked by God to be the mother of this child. He is truely a blessing to me and my family. Relatives of all ages have bonded with my son, even elderly great grandparents who originally though all mentally challenged people should live in an institution and would have no place in society. My son is a child just like all other children, he plays with his friends and goes to a normal preschool with full inclusion. He cleans up his room when he makes a mess and he loves to talk on the phone. He will one day graduate from high school and even possibly live on his own. He will have a job and be a fully functioning member of society when he grows up. I cannot imagine my life without him. God placed him on this earth to serve a purpose. How could I choose to abort a creation of God? Is it my place to decide that the extra chromosome is a reason not to let him live? This is an accurate number (85%) of babies that are terminated when they are tested inutero for down syndrome. I just wonder what these parents are missing out on. If these children would have been anything like mine, boy should they be sorry. They are missing out on a bunch of smiles, laughs, hugs and kisses! I am pregnant again and will not have any extra prenatal testing done. I am well aware of the chances that I will have a child with special needs. I am willing to take thoes chances, I will have the child that God gave me.
fingerpaintings said,
February 7, 2007 at 3:50 pm
Thank you for your wisdom Absentia and do know that I cannot imagine any woman making a decision like this lightly. I want to answer your accusation that I somehow am passing judgement on women who choose to abort. I have worked with women who have aborted on the counsel of their medical team. I was only commenting on those who do so prior to definitive testing such as CVS or an amniocentesis, as I know personally women who have and regretted.
Amber, It is wonderful to hear of your experience with your own son! My cousin’s daughter is an incredible 5 year old now who is teaching me to sign as she learns to talk. I have sat for hours with her on my lap as we talk and play and bond. I cannot imagine our lives without her also, she is indeed a precious gift.
Betsy said,
March 9, 2007 at 3:33 pm
Medical screening for birth defects is also done to educate, not soley to terminate. If a woman is screen positive, goes on to have an amnio or CVS, and is found to be carrying a Down’s baby, not only does she have the choice to terminate, she also has the option of education. She can then educate and prepare herself for the road ahead. If she then proceeds with the pregnancy, she will do so with the power of knowledge. Also, the doctors at the hospital can be prepared to deal with the special medical circumstances that often occur with a Down’s baby.
Tammy said,
February 5, 2008 at 8:53 pm
I also believe that for the 85% that do abort it is a very hard decison. Maybe we will miss out on some things, but the quality of life is not there for ALL Downs children and you don’t know which ones are going to be luckier than others. We always hear why we will regret the choice, nevertheless, 85% make this choice.
carri warshak, md said,
June 3, 2008 at 5:33 am
if you are considering your screening/ testing options including: alpha-fetoprotein, triple/quad screen, nuchal translucency, amniocentesis, chorionic villous sampling—check out http://www.AskAnOB.com first!