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March 3, 2015

Different is not defective

B_LcGYgUsAAEqEYToday is World Birth Defects Day, chosen for 3/3 representing the statistic that about 1-in-33 births will be born with a birth defect. Let’s see how some are celebrating #WorldBDDay.

  • The American Congress of Obstetricians & Gynecologists (ACOG) tweeted:


    From the linked FAQ:

    Reducing Risks of Birth Defects

    What causes birth defects?

    Some birth defects are caused by genes that can be passed down from parents to children. Others result from a problem with chromosomes.

    The FAQ does not detail how these “problem[s] with chromosomes” are reduced.

  • The CDC NCBDDD’s website on birth defects provides an overview using non-directive language. It’s website where prenatal testing is addressed however …

    Screening Tests

    A screening test is a procedure or test that is done to see if a woman or her baby might have certain problems. A screening test does not provide a specific diagnosis—that requires a diagnostic test (see below). A screening test can sometimes give an abnormal result even when there is nothing wrong with the mother or her baby. Less often, a screening test result can be normal and miss a problem that does exist.

    Diagnostic Tests

    If the result of a screening test is abnormal, doctors usually offer further diagnostic tests to determine if birth defects or other possible problems with the baby are present.

    (emphasis mine). Non-invasive prenatal screening is not mentioned on the website.

  • The March of Dimes:


    From the linked webpage:

    More than 8 million babies worldwide are born each year with a serious birth defect. Birth defects are a leading cause of death in the first year of life, and babies who survive may be physically or mentally disabled, taking a costly toll on their families, communities and nations.

  • The National Center for Birth Defects & Developmental Disabilities (NCBDDD), part of the Centers for Disease Control & Prevention (CDC), wants to know the following:

What I’d like the world to know on World Birth Defects Day:

Preventing conditions that are disabling is a worthy pursuit for those that can actually be prevented: preconception counseling and screening for carrier conditions like cystic fibrosis and Tay Sachs; folic acid supplementation to prevent open neural tube defects; alcohol abstinence during pregnancy to avoid Fetal Alcohol Syndrome; and, other steps that can be taken to mitigate conditions that are disabling.

But, preventing birth defects should not encompass chromosomal conditions through prenatal testing, since there is no measure that prevents the chromosomal condition. That is a condition that occurs at or soon after conception.

Years ago in a radio interview with nationally-syndicated talk show host Hugh Hewitt, he said a line that I think should be remembered on this day:

Different is not defective.

My daughter has Down syndrome, one of those chromosomal conditions that cannot be prevented. I want ACOG, the CDC, the March of Dimes, and all others committed to the World Birth Defects Day campaign to know that:

Juliet is NOT

A problem

Something wrong

And she is not a costly toll.

Juliet, before her first dance recital

Juliet, before her first dance recital

Juliet IS

Loved

Beautiful

And a fellow human being worthy of respect, compassion, and care.

Update: Throughout the day, other tweets recognizing #WorldBDDay will be added to this post. Feel free to tweet me them @MarkWLeach:

  • Here’s the NCBDDD being all eugenic-y:

  • And here’s the CDC doubling down, with a video featuring individuals with cleft palate, spina bifida, and Down syndrome, with the title beneath it saying “Birth Defects: Common, Costly, Critical.” And, viewers directed at the end to the website: endbirthdefects.org.

  • And a tweet from the Wellbeing Foundation that is appropriately measured:

UPDATE: So far, the second year for March 3 being World Birth Defects Day is off to a better start with a focus on preventing those conditions that are preventable through supplementation and healthy pregnancy decisions, particularly preventing open neural tube defects through folic acid supplementation.

A good graphic here with a message all should be able to support (however, it doesn’t appear that any of the children pictured were born with a birth defect):

And, for the second year in a row, the March of Dimes wants to hear your story, so share yours if so inclined:

Another good message here on #WorldBDDay:

Filed Under: A Life with Down syndrome Tagged With: , ,

Comments

  1. BE Informed says
    March 3, 2015 at 1:19 pm

    Please post your sentiments about mitigating preventable conditions vs eugenic-y statements about prenatal testing in the comments section of your post about testing not being negative ever AND in response to any post or tweet.

    I would love to see and repost any response you post too.

    THANK YOU

  2. renatelindeman says
    March 3, 2015 at 3:04 pm

    And then there is my homecountry (Netherlands) where a national newspaper published an article today about a woman who wrote a children’s book about terminating her pregnancy for reason of Down syndrome. Yes, you read correctly, a children’s book. I kid you not! The reason given was; she wanted to explain to her 4-year old son why he did not have a baby brother after all (aborted) and found there were no books yet on this topic. In the book the aborted baby has a name: ‘different’ (in Dutch ‘Anders’)
    Happy different day!

  3. BE Informed says
    March 3, 2015 at 6:57 pm

    Oh my. I pray for these siblings to someday get balanced discussions and enlightened info leading to very awkward discussions as the child meets others with disabilities. I would attend ANY book signing with a group of families with DS or find ways to connect and educate this author who I think I will look up now….