More Than Just Diagnoses—Giving Parents Realistic Life Outcomes After Prenatal Testing Results

January 3, 2017 / 0 Comments

The year may still feel new to many of us, but to expecting parents it is absolutely the same old by comparison to the newness of their coming baby. What is also relatively new for expecting parents is the availability of prenatal testing. Around 2007, the American College of Obstetricians and Gynecologists (ACOG) recommended that all women be offered prenatal testing for chromosomal conditions, such as Down syndrome. It seemed to make sense because the technology had advanced enough to make the procedure quite easy and efficient. But there are some big downsides to this recommendation.

Stephanie Meredith, Information Services Director/Medical Outreach Director at the University of Kentucky (photo credit: Stephanie Meredith)

Stephanie Meredith at the University of Kentucky explains that “Dr. Brian Skotko’s research showed that not enough women got adequate services after a diagnosis was given. There’s a situation where 4 million women are being offered screening and for some of them that may be the first interaction with disability.” Given our cultural biases against disability, it is easy to imagine that being given a diagnosis for your unborn child without any prior knowledge of what to expect and without follow-up services would leave expecting parents frightened and confused. This is exactly where Meredith’s work as the Medical Outreach Director of the University Center for Excellence in Developmental Disabilities comes in.

Meredith, who herself has a son with Down syndrome had received wonderful support after his birth, but she realized that her positive experience was not the norm in the U.S. or in other countires she has worked in. “People were being offered the test, but they didn’t know what conditions were being tested,” says Meredith. And then once they were given a diagnosis, they largely received just clinical information, such as the specific genetic conditions that can cause a disability. Meredith’s work expands that: “I create materials about Down syndrome and additional conditions. We manage and distribute 10 to 20 thousand of resources a year on the importance on giving parents a more well-rounded picture.” One key part of how her team communicates life outcomes is through pictures.

An example of the photo materials depicting life outcomes for children with Down syndrome (photo credit: Stephanie Meredith)

“We wanted people to see what life with disabilities is like as though they’re looking through a window,” says Meredith. “We wanted them to see individuals of all ages and cultures and types of abilities and so what we did from the very beginning is interview people who met different criteria in terms of representations. But they weren’t picked for physical reasons, but demographic reasons. And we asked ‘what are your interests’ and ‘what would you like to be photographed doing and with whom.’” In other words, Meredith’s materials portray children with various genetic conditions in different life stages. This helps people literally picture what kind of life a child with a disability—something that many families had never considered up to that point—would lead. These images are much needed in large part because we as a culture are not widely exposed to images of people with Down syndrome—or hardly any other disability—leading fulfilled, well-rounded lives.

By comparison, Meredith explains that usually the images available to parents used to be “historical medical pictures with a box over the eyes and a nude person in black and white.” Additionally, “We have families testifying in hearings that 8 years ago they received a book titled ‘You’re having a Mongoloid now what’. You can imagine how that shapes a parent’s perspective at that very vulnerable moment. That can shape their disability perspective for years to come.” Meredith believes that there are pockets of people who still receive this kind of outdated, incomplete and problematic information though she and her team work tirelessly to make these practices a part of history.

An example of the photo materials depicting life outcomes for children with Turner syndrome (photo credit: Justin Meredith)

But despite their remarkable work, there remain challenges. “It’s such a tight rope that we walk in covering this particular issue because it’s at such a nexus at disability rights, reproductive rights and patient rights and making sure that we are mindful and respectful of the perspectives of different stakeholders involved.” Balancing pro-life versus pro-choice stakeholders for example is a particularly difficult challenge. But Meredith’s team strives to walk the fine line of giving accurate information without persuading people to make a certain decision. To keep this level of impartiality they even have two sets of materials. “What we try to portray is observational, no one is looking at the camera for reproductive decision making decisions. But for new parents, after the decision has been made, we do have babies looking at the camera. That and for families who are preparing for the birth of baby. So we have two sets of materials. Materials for the moment of diagnosis and for people who are preparing for childbirth.”

For Meredith disseminating information on the full life outcomes of children with certain genetic conditions remains crucial because how we envision people matters deeply. During our conversation she told me a startling statistic: “There’s a difference in receiving a Down syndrome diagnosis in 1970 vs 2015. In the 70s the life expectancy is 20, no one with Down syndrome can read, and 50% would not survive past the first year. In 2015 you have a life expectancy of 60, the majority can read to some extent, and 94% will live past their first year. But nothing has changed on the chromosome. That is all access to supports and services. When people are given supports they can thrive.”

Suggested resources on this issue from Stephanie Meredith: www.lettercase.org, www.downsyndromepregnancy.org