“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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