New Booklet out for Expectant Parents of Child with Down Syndrome

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The National Down Syndrome Society and Lettercase have joined forces to produce Understanding a Down Syndrome Diagnosis (updated in 2017 and available online for free). It looks like the producers intend that the booklet be distributed to patients by their obstetricians after a pre-natal test suggests that the fetus has Down Syndrome. Lettercase also offers a companion brochure for doctors called, Delivering a Down Syndrome Diagnosis.

I am delighted that doctors will have such tools are available, and I hope many use it. The booklet provides “accurate, up-to-date, and balanced information about Down syndrome . . . [and covers] available health and education services, common medical conditions for babies with Down syndrome, information about pregnancy options, and helpful resources about the condition.”

I don’t know what they mean by “pregnancy options.” I assume, since this is intended for all medical professionals to use, that one of the options listed is abortion. I also assume that the rest of the booklet helps parents consider keeping their child. After all, the National Down Syndrome Society’s mission is to be the “national advocate for the value, acceptance, and inclusion of people with Down Syndrome.”

Some research suggests that as many as 90 percent of children with Down Syndrome in the U.S. are aborted annually. Prenatal testing continues to advance so that confirmation of Down Syndrome is more accurate and easier. It’s a national tragedy that we as a society in North America are throwing away human lives through abortion, and such a high percentage of babies with Down Syndrome.

If you receive news that your unborn or newborn child (or grandchild) has Down Syndrome, grieve the loss of the child you were expecting. Then rejoice in the life of the child that God is bringing into your family. Or if you are a pastor or friend or pastoral care giver to parents who find out their child has Down Syndrome, grieve and rejoice with them. To hear from others about the positive impact that children with Down Syndrome have had on their families, get a copy of Praying with Lior and laugh and cry with Lior and his family as they prepare for his Bar Mitzvah. Also, read Disability Concern’s newsletter that featured people with Down Syndrome. Doing this will help drive away the fear and understand better the wonderful plan that God has for each human life.

Update (April 30, 2015): Although the abortion of any child with Down syndrome, solely because the child has Down syndrome, is always a tragic loss, a new study indicates that the reported 90 abortion rate of children with DS may be grossly exaggerated. That study found, "For the U.S., as a whole, an estimated 30% of fetuses with DS were selectively terminated in recent years, more or less stable since 1996." In addition, researchers found that ethnicity of parents dramatically affected the elective abortion rate of children whom prenatal testing showed that they had DS: "Reduction percentage estimates turn out to differ greatly by race/ethnic group—highest for Asians/Pacific Islanders (61%), followed by non-Hispanic whites (39%), non-Hispanic blacks/Africans (27%), Hispanics (18%), and American Indians (16%)." (Source: de Graaf G, Buckley F, Skotko BG. 2015. Estimates of the live births, natural losses, and elective terminations with down syndrome in the United States. Am J Med Genet Part A 167A:756–767.)

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Do you mean to say 90% of Downs children?  I'm assuming that is a US, not a world figure. 

Guide

Steve, yes on both counts. Thanks for asking these clarifying questions. I changed that sentence in the blog to bring out both points.

Participant

Objection - it's "children with Down Syndome" - not "Downs children." That may seem like a minor technicality, but it isn't. They are children first, they happen to have Down Syndrome. Sadly using terms such as "Downs children" identifies them by their disability.
It's indeed wonderful that such are now available. Too late for many, however. The way a doctor delivers the news makes a huge world of difference.

Thanks for correcting me Wendy.  I see that Mark used the right terminology when he edited his blog. 

Participant

I hope you didn't take offense. We were very fortunate that our doctor presented us with ideas of just what she could accomplish, rather than on what all her limitations would be. Our daughter is now 24. When she was born I had to get help - 4 times I tried calling the "Association for the Mentally Retarded" and 3 times I hung up the phone as soon as I heard the receptionist say this line. Maybe I'm hyper-sensitive to names and terminology, but I for one am so thankful that parents calling today instead get to hear "Association for Community Living."

Understood. Blessings, Steve

Guide

Wendy's concern about language is a good one. I'm sure Steve meant no offense. Helping people to learn to use appropriate language is one of the things we keep working on. For those who are interested in reading further, Kathie Snow has written a lot of good stuff about "people first" language (and much more about having an appropriate perspective about people with disabilities) on her web site: www.disabilityisnatural.com.

Our son, Brant, is a delightful seven year old boy who has Down syndrome.  After Brant was born we did grieve - my husband and I were only 27 years old and I had taken my prenatal vitamins, hadn't smoked or drank, etc - so it was a shock to learn that he had Down syndrome.  Of course, after the initial shock wore off we embraced Brant as a valued member of our family and learned that a lot of the stereotypes that most people believe about Down syndrome aren't true. 80% of babies with Down syndrome are born to mothers UNDER the age of 35 (because more moms in that age group are having babies and are more fertile, even though the chances of having a baby with Down syndrome do increase as a mother ages if she becomes pregnant).  Down syndrome is a genetic difference that causes a third copy of the 21st chromosome in every cell of a person's body.  And it occurs 1 in 800-1000 live births and is not genetic (except in less than 1% of all cases) and is not caused by anything the mother did or didn't do during the pregnancy.

As for the high termination rate - it's a bit of a misleading statistic.  Yes, sadly, 9 out of 10 women who discover they are carrying a baby with Down syndrome during pregnancy choose to terminate the pregnancy.  BUT in order to get a 99.9% accurate prenatal diagnosis a woman must undergo a procedure called amniocentesis in which a needle is inserted into a woman's belly and amniotic fluid is withdrawn from the amniotic sac - this procedure carries a 2% chance of sponataneous abortion (or miscarriage) so many women who would not terminate their pregnancy if the baby had a genetic anomaly choose not to have this procedure.  Also, for many women (like myself) there are no indicators or "markers" that show up on the ultrasound that would alert a doctor that something might be different about the baby.  I believe the statistic is that a "marker" does show up on the ultrasound in about 50% of pregnancies where a baby has Down syndrome (markers can be bright spots on the kidney, bowel, brain, or heart, thickened nuchal fold in neck, smaller nose, etc).  Usually an amniocentesis is only recommended for women who show a "marker" on the ultrasound or are over the age of 35.

Also, I think it's great that the National Down syndrome groups are providing information for genetecists and doctors to hand out to parents who receive a prenatal diagnosis.  Up til recently (and from what I understand still is happening in some instances) some doctors and genetecists were/are encouraging parents to terminate  the pregnancy stating that the child will never live on his/her own, never learn to talk, never learn to use the toilet independently, not walk properly, be a burden for the rest of his/her life, etc.  By providing a more realistic outlook and perhaps even connecting the expectant couple with a family who has a child with Down syndrome, we can share the joy and blessing a child with Down syndrome can be for his/her family.  Our son is fully included in school, has tons of friends, has a GREAT personality (quite the comedian), walks, talks, uses the toilet, etc - and many adults with Down syndrome can live independently or semi-independently, have jobs, and some even get married and get their driver's licenses. 

Guide

Katrinia, thanks for sharing. That's one of our messages here at Disability Concerns: no one will be a burden for the rest of his life, but all people have gifts to share. Here's a great story about how the Lord used a young man who has Down syndrome to speak truth into the life of a businessman, "The Mouth of the Lord," by Gerry Koning who is a Christian Reformed minister.