INCLUSIVE FAMILY
Smiling on the Inside:
LIVING WITH
MOEBIUS SYNDROME
BY LINDSAY C. VANASDALAN
What’s in a smile?
Moebius syndrome is recognized by patients’
inability to form most facial expressions
or turn their eyes outward toward the side
of the face.

“They can’t smile; they can’t frown.

They can’t close their eyes; they can’t
raise their eyebrows,” says Hollis Chaney,
a pulmonologist at Children’s National
Hospital, who is also on the scientific
advisory committee for the foundation.

Under-formed or malformed nuclei of
cranial nerves 6 and 7 are the source, not the
muscles, says Stafstrom.

30 WashingtonFAMILY JANUARY 2022
Although facial movement is the main
marker, Moebius syndrome manifests itself
in different ways, including crossed eyes,
club feet, webbed fingers and developmental
delays or disorders such as autism.

Just as it is with any special needs child,
there’s no playbook, says the foundation’s
president Jacob Licht, recalling a
conversation with a friend who said, “If
you’ve met one (kid) with autism, you’ve met
one kid with autism.”
Challenges The most severe challenges for Moebius
syndrome patients come when they’re
infants. Some can have trouble breathing or
swallowing. As a pulmonologist, Chaney says
she has seen food end up in the lungs, which
can cause pneumonia.

But once they are past that hurdle, most
patients can compensate for speech and
movement issues through therapies.

Licht lives in Silver Spring with his 19-year-
old daughter, Miriam (seen in the photo at
left). Through therapy, she learned how to
say P’s and B’s without using her lips.

“The milestones in your kid’s life become
different,” her father says, noting that using
a straw was a big one.

Despite some adjustments, his daughter
has still been able to live a relatively normal
life—much like her twin sister, who does not
have Moebius syndrome. She loves playing
hockey for her special needs team and is
part of Friendship Circle, an organization
which connects Jewish teens to teens
with disabilities.

Looking different
With any rare condition, community
can be an invaluable resource for not
feeling alone.

THIS PAGE: PHOTO PROVIDED; OPPOSITE PAGE:
RICK GUIDIOTTI OF POSITIVE EXPOSURE
P ediatric neurologist Carl E.

Stafstrom remembers that his first
experience with Moebius syndrome
was with a child’s mother. She had the tell-
tale signs: a drooping face, eyes that could not
glance to the side—and, most importantly,
she couldn’t smile.

Without such a simple means of
communication we often take for granted,
he couldn’t help but wonder what challenges
she might have faced as a single parent.

“How do you teach your little one normal
social emotions and interactions when
you can’t express it on your face?” he says.

Since then, Stafstrom, director of the John
M. Freeman Pediatric Epilepsy Center for
Johns Hopkins Medicine and director of the
Division of Pediatric Neurology, has had two
patients with Moebius syndrome—a rare,
congenital craniofacial condition occurring
in only two to 20 cases per million births.

One of his missions is raising more awareness.

He joins doctors in Washington, D.C.

and Philadelphia, along with two members
of the Moebius Syndrome Foundation, to
describe what Moebius syndrome is and how
it affects children.




“The psychological aspects
of growing up and living in the
world without being able to make
facial expressions is really pretty
profound,” Stafstrom says.

Bullying can start around age 8 or
9, says Scott Bartlett, director of the
Craniofacial Program at Children’s
Hospital of Philadelphia (CHOP).

Stafstrom adds that discrimination
can result for patients getting jobs
or promotions.

When Licht first attended a
foundation conference and saw
at least 100 people present who
had Moebius syndrome, he knew
he’d found a community. “That’s
what the foundation has given
us,” he says.

Rebecca Maher, secretary
for the foundation’s board of
directors, recalls that within
five minutes of reaching out to
a woman in her area, they were
texting for hours. She only later
found out what a critical resource
she had been—the woman had
just learned her child’s diagnosis
As of now, there is no cure
in the NICU.

for the facial weakness, but
surgeries have been able to offer
individuals some hope.

What’s next?
Eye surgery to uncross her
Maher says two known causes
of Moebius syndrome are a daughter’s eyes when she was 8
vascular event in utero or use of months old made all the difference
Misoprostol, a medicine used to in her development, Maher says,
stimulate contractions or induce because her child could better
abortions, but research is still process her surroundings.

Bartlett, also an attending
being done on genetic origins.

surgeon in the Division of Plastic,
Reconstructive and Oral Surgery
at CHOP, says one type of surgery
can transfer temple or leg muscles
(and their nerve supplies) to the
face, but its effectiveness has
its limitations.

“A smile itself around the
corner of a mouth ... there are
probably six or seven different
muscles,” he says. “When you do
reconstruction, you’re basically
putting (in) a single muscle
pulling (in) a single direction.”
It can also be hard to retrain a
muscle when someone becomes
older and loses some degree of
neuroplasticity, he says.

When it comes down to it,
however, some patients might
not see surgery as necessary for
living a fulfilling life with Moebius
syndrome. Miriam Licht is
one of them.

“We decided very early on that
we were going to put this in her
hands,” her dad Jacob says. n
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