Envisioning a life with a child with Down syndrome

Image from Superbowl 50 SunTrust Ad

Image from Superbowl 50 SunTrust Ad

Envisioning a life with a child with Down syndrome is one of the biggest challenges for most expectant parents receiving a prenatal test result. Here’s how the testing laboratories’ images frame that future and what resources are available to help patients see the possibilities of a future with a child with Down syndrome.

When a parent receives the news that their expected child may have Down syndrome, it is described as a “flashbulb” memory: time slows down and the parent can recall in detail what the obstetrician, nurse, geneticist, or genetic counselor told them, with the emotions felt at that time coming back with the same force, even years later.

It is common for parents receiving a prenatal test result to weep for the life they thought they would have with the child that they thought they would have. Hearing that their child has “Down syndrome” is rarely something couples consider as an option when they find out they’re pregnant.

For most parents, their vision of what “Down syndrome” means is one that may be a black-and-white photo from an outdated textbook or an image colored by negative connotations of adults living in institutions or children segregated in special ed classrooms.

The laboratories who profit by parents selecting their testing do nothing to change this view of the future.

The imagery of the testing laboratories

Instead, what the testing laboratories prominently feature and tell parents is that the laboratory’s testing can assure them of a “good” future, a “healthy” pregnancy, a freedom from anxiety, by showing images where there is no place in the future for a child with Down syndrome.

Here are images from the laboratories with the largest market share offering cell free DNA screening; note what is not shown:

Sequenom's Patient Homepage Header

Sequenom’s patient homepage header

verifi patient brochure

verifi patient brochure

Panorama's homepage

Panorama’s homepage

Harmony's Expecting Patient homepage

Harmony’s Expecting Patient homepage

(All screenshots taken February 16, 2016).

These are the images directed to patients. Smiling pregnant moms and sometimes their partner, accompanied by explicit messages of:

  • The Science of Results You Can Trust
  • The Reassurance of Knowing
  • DNA Matters

On none of these websites are there any images of a child with Down syndrome.

So, where is the reassurance in the results you can trust because DNA matters when there is no picture of what a life may be like with a child with Down syndrome?

Envisioning a future life with Down syndrome

While the testing laboratories, which are being paid millions of dollars from the sales of their tests, do not provide any images of the conditions that they test for, there are both recommended materials providing those images to patients and broader efforts to change the view of Down syndrome in the culture.

The American College of Obstetricians & Gynecologists issued the most current statement on cell-free DNA screening, tests like those offered by the laboratories listed above. In that opinion, it linked to further information, which provided resources for patients, including the booklet that provides the images of a life with Down syndrome:

ACOG cfDNA Cmte Op

The last resource is the Lettercase booklet, “Understanding a Down Syndrome Diagnosis.” The ACOG opinion joins those of the American College of Medical Genetics & Genomics and the National Society of Genetic Counselors as recommending that this booklet be provided to patients receiving a prenatal test result or diagnosis.

I have yet to hand the Lettercase booklet to anyone who doesn’t first flip through the whole booklet looking at the pictures, and then returning to read the text. Copies of the booklet are available at Lettercase’s website, where some of the images can be viewed online (link here).

The Lettercase booklet can provide that vision of the future to expectant parents. But patients enter their OB’s office with their own views of Down syndrome framed by the images they see in the culture. There are efforts to change those images, as well.

Changing the face of beauty” is working to change those images in popular culture. Through this organization’s efforts, over 100 companies have committed to including individuals with Down syndrome and other conditions in their advertising and public media campaigns. The CTFOB’s website has many images of these inclusive advertisements.

The image at the beginning of this post is from an ad by SunTrust which ran during the 2016 Superbowl–the pinnacle of media advertising. The young girl, Cora Slocum, had previously modeled for children’s shoe company Livie & Luca, which picked Cora after working with CTFOB. (The full commercial can be viewed here; Cora appears at the 0:38 mark).

The campaign is now challenging more companies to step up to include those with conditions as part of the diversity they show in their advertising with the hashtag #whosnext. Hopefully, companies that specifically market to pregnant moms will join the campaign and feature images of moms caring for their babies with Down syndrome.

It is through these efforts–specific recommended resources for expectant parents in the Lettercase booklet and broader, cultural changing depictions of disability through CTFOB–that the next generation of parents may have a new vision of what a future life with a child with Down syndrome can look like.

And, by either having that vision already, through the cultural change of how Down syndrome is depicted, or, in reviewing the Lettercase booklet and seeing children and adults with Down syndrome in typical situations today, then those parents may be reassured by the more accurate knowledge that there is a place in the future for a life with Down syndrome.


The Down Syndrome Diagnosis Network (DSDN) has made an easy, step-by-step, webpage tutorial for joining the #whosnext? campaign, which can be accessed here. My contribution to the #whosnext? campaign:

Comments

  1. Mark, you can add to Changing the Face of Beauty Rick Guidotti’s organization, Positive Exposure (www.positivexposure.org). They are committed to the same goal. We (the Jerome Lejeune Foundation USA) funded the development of a video on Down syndrome as part of their series called “Faces Redefining the Art of Medical Education” that can be seen here: http://goo.gl/H2w3r4. the purpose of this series is to assist those in the medical professions, including genetic counselors, to see the humanity of the individual first – and then treat their disability out of a love and concern for the individual.

    • Thank you, Mark, for sharing. This post was not to suggest that CTFOB is the exclusive campaign for changing cultural perceptions of Down syndrome and I’m glad to know of this more pointed effort to the medical profession. I welcome any other comments highlighting other efforts to change how Down syndrome is popularly depicted and received.

  2. Dale Reardon says:

    Hi,

    I publish an Australian website on disability news and opinion at:
    https://mydisabilitymatters.com.au

    and was wondering if it might be okay to republish this article and any other relevant ones on our website, with appropriate credit and a link back of course.

    It would help spread your work and gain a wider audience for you.

    Hope we can work together and I am quite happy to publish other articles you may have written that aren’t on your blog also.

    Thanks,
    Dale.

    • I always enjoy my work being shared so more can read it. I would prefer that any sharing is limited to the fair use rule of thumb of 250 words and then linked to the full post on my site.

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