Rewriting the Script for Parents of Babies With Down Syndrome

By ACA | November 11, 2019

For new parents of babies born with Down syndrome, the educational brochures that were at their disposal made them feel less than hopeful. Mayo Clinic’s Office of Patient Education knew they could do better, so a team set about creating new materials to provide families with a more optimistic outlook.

Mallory Diercks hadn’t expected to be studying materials about babies with Down syndrome. But soon after their second child, Easton, was born, health care providers told Diercks and her husband that their son showed signs of Down syndrome. Tests later confirmed those suspicions.

As she sat in her bed at Mayo Clinic Hospital — Rochester, Methodist Campus, learning about the new world her family had entered, Diercks was overwhelmed. “It was all negative,” she says. “It was all about what your child would not do.”

Diercks
read about potential health issues, developmental delays and never-wills.
“There was nothing that made me feel, ‘OK, I can do this,'” she says.
“I had so many fears. There was nothing uplifting in the material, and I
needed that.”

She wasn’t alone. Other parents of children with Down syndrome had similar experiences. Late last year, one of them reached out to the Mayo Clinic Office of Patient Experience. “A parent shared that she felt there was a gap in the quality of education provided to families,” says Jill Walters, a Mayo Clinic senior patient education specialist. “She felt the material she received was not sensitive or hopeful.”

When Walters reviewed the materials, she agreed. She also realized that none of the resources being given to parents had been created by Mayo Clinic. “The material looked nice,” she says. “But after reviewing the messages, I thought, ‘Oh, we could do a lot better.'”

Over
the next several months, Walters and a team that included parents created a new
printed brochure to be given to families at Mayo Clinic that better
reflects the reality of life with Down syndrome.

As
Diercks has discovered in the seven years since Easton’s birth, it’s a life
that includes both more normalcy and more joy than she ever imagined that day
in her hospital bed. “I used to think, ‘I don’t know how I would handle it
if I had a child with a disability.’ I didn’t think I could do it,” she
says. “But my greatest fear has turned into my biggest blessing. I would
take another Easton in a heartbeat.”

Offering information and reassurance

Creating
materials in response to feedback received directly from a patient was a new
experience for Walters. “I haven’t ever had that happen before,” she
says. “We’re very proactive about assessing the need for educational
materials. But this was a need we hadn’t been aware of.”

Walters
was determined to meet that need. She requested and received approval to create
new material that would provide honest information on Down syndrome. The piece
would include medical information, but Walters also wanted to provide something
else — the reassurance and hope that parents craved.

“The
tone had to be positive. It had to be optimistic,” says Mary Curtis, a
communications consultant in Mayo Clinic’s Office of Patient Education whose
job it was to write the brochure. “We needed new parents to know they
could look forward to a good and hopeful future for their children.”

“It was really a gift to be able to do this and help shape the message that’s going out to other families.”

Randi Beyerl

As
Walters and Curtis discussed their approach to the project, they decided to
involve a broad team of experts. In addition to consulting health care
providers and geneticists for the most up-to-date information on Down syndrome,
they also would include the voices of parents who had children living with the
condition.

Walters
reached out to the mother whose feedback had launched the project and asked if
she’d be willing to provide input on the new material. She also asked to be connected
to other families who might be open to helping out.

“We
reached out to nine families and received enthusiastic yeses across the
board,” Walters says. Diercks was among them. “I was elated when they
reached out to me,” Diercks says. “I think it’s wonderful that they
asked parents for input. Geneticists and doctors may have the medical
information, but they don’t really understand things in the same way that
parents do.”

Randi
Beyerl, whose son, Simon, has Down syndrome, agrees. “It was really a gift
to be able to do this and help shape the message that’s going out to other
families,” she says. “After we learned Simon would have Down
syndrome, I desperately wanted to hear from other parents. The best part of the
material I received after his diagnosis were the quotes from parents. Those are
what I focused on.”

Highlighting real families, real lives

In
addition to incorporating messages from parents in the brochure, Walters wanted
the publication to show real families living real lives. She scheduled a series
of photo shoots where Mayo Clinic photographer Paul Flessland captured images
of children with Down syndrome interacting with others at home and in the
community. Walters and Curtis directed the photo shoots and got a firsthand
look at the families’ lives.

“It
was an unbelievable experience,” Curtis says. “Sitting at my desk, it
can be easy to feel distant from our patients. This experience was a
spectacular reminder of why I choose to do what I do. Jill and I knew we had to
do right by these amazing people.”

“Easton is way more like his brothers and sister than not. He’s not that different.”

Mallory Diercks

The
photos show children with their parents, siblings and classmates. They’re
reading, shopping for groceries and sharing dessert at a restaurant. The images
are designed to convey a message to parents who have received the news that
their child has Down syndrome: Your life will not be as different as you may
fear at this moment.

“We
are a very normal family unit,” says Diercks, who has three other children.
“Yes, there are hard days. But there are hard days with all children.
Easton is way more like his brothers and sister than not. He’s not that
different.”

Randi
Beyerl also has found that to be true. “There are extra appointments, but
lots of normal,” she says. “When I hear co-workers talking about
their kids, I’m like, ‘Yep, us too.'”

For
the aspects of her son’s life that are different or difficult, Beyerl has
discovered an army of supporters. “There are lots of specialists to help
you along the way,” she says. “There is also a community of other
parents. Connecting with other families is so important and so helpful. We have
each other. We are not alone.”

Raising awareness, sharing hope

The
new patient education brochure was completed in October, coinciding with Down
Syndrome Awareness Month. But for the parents who participated in the project,
every day is an opportunity to raise awareness.

“Having
Simon has given me a fire inside for advocacy,” Beyerl says. “It is
important to my husband and I that Simon is valued for who he is and receives
services that will help him thrive.”

That’s
one reason she and other parents were grateful for the opportunity to help
develop the material and shape the conversation around Down syndrome. “I’m
thrilled Mayo is listening to families,” Diercks says. “I’m very
excited to be sharing our perspective and getting more awareness and hope out
there.”

“An awareness of the risks and challenges is important. But so is hearing about the joy and gifts your child will bring to your family.”

Randi Beyerl

Beyerl
feels the new material provides a more balanced and accurate picture to parents
who receive the news that their child has Down syndrome. “An awareness of
the risks and challenges is important,” she says. “But so is hearing
about the joy and gifts your child will bring to your family.”

Diercks
agrees. “The worst thing people say — and people still say this to me — is
‘I’m sorry,'” she says. “Don’t be sorry. We’re very thankful for
Easton. We’re truly blessed to have him.”

That’s
a message that appears front and center in the brochure, which begins with the
words new parents love to hear: “Congratulations on your new baby!”

View
a slideshow of photos included in the new brochure: