Miracles & Butte
Natalie Carlise, Family V
When I was pregnant, I always referred to Najah as my little butterfly. I told everyone
that this child will be unique; not like anyone else. Butterflies go through a complete
metamorphosis before they bloom. You will never see two butterflies alike due to their
unique patterns. Little did we know that Najah would be exceptionally unique.
We find pure joy in watching our ten-year-old daughter, Najah, a happy-go-lucky girl,
laughing, telling jokes, singing, and tumbling in the gym. Ten years ago, her daddy Jahred
helped deliver his daughter who was born looking “blue” and was quickly whisked away
by the nurses. As first-time parents, we weren’t sure what to expect, but we knew it wasn’t
this.
Jahred watched in fear as the nurses began cleaning our newborn with towels and her
skin wiped away, too. Her bottom, face and head had little to no skin. Najah’s tiny hands
and feet had blisters and looked like they had been dragged through concrete. The nurses
also discovered a cleft. Due to her fragile skin, we did not get to hold her until she was
three-days-old.
Doctors were confounded. They said Najah had congenital anomalies, but they couldn’t
give a specific diagnosis. “It was hard to trust people when the experienced professionals
had blank expressions,” Jahred said. After eight days in the hospital, doctors sent us
home with our delicate child and told us to enjoy the short time we would have with her.
Frightened, emotional and with no explanations for her condition, we did just that.
AEC, Baha and Other Terms We Learned
In the following weeks, Najah’s skin peeling lessened and her skin very slowly began to
heal. We spent the first months of her life learning to care for her skin and to feed her
through her G-Tube, visiting specialists in search of a diagnosis and enduring cleft repair
surgeries. Najah was hospitalized four times because of her inability to eat or severe
ear infections. Eventually, a dermatologist provided the answer: Najah was affected by
ectodermal dysplasia (ED). Najah has Ankyloblepharon-Ectodermal Dysplasia-Clefting
(AEC) syndrome, a specific type of ED.
At six months old Najah was taken for another surgery to have ear tubes placed. We just
knew that this was going to solve all her problems with the ear infections. About an hour
into the surgery, the doctor came out and said, “Mr. and Mrs. Carlise, we have some bad
news. Najah has a layer of skin covering her eardrums and we are unable to remove it.”
Our hearts sank. Najah was diagnosed with bilateral conductive hearing loss. We had no
idea up until that time that her hearing was significantly decreased. At nine months of
age, Najah was fitted with a Cochlear Baha. We remember the first time she was aided:
her big brown eyes just lit up the room, her smile was priceless. Our baby could now hear
our voices.
Today, Najah wears her Baha with pride. She has found her voice and sings in the Nashville
Children’s Choir and was the only child with hearing loss to perform (and even solo!) with
a recent Disney Lion King production. (She played Rafiki, which suits her take on life.) She
is training as a level 6 gymnast who practices four times a week. In that echoing gym,
we see her standing right in front of the coaches to hear and see (and understand) them
better. She also does not sweat, an essential function in maintaining body temperature, so
she has to advocate for herself to take frequent breaks to keep her body temperature cool.