Our "9-1-1 Baby"
Until our little girl was six months old, we were sure her story began with "Once upon a time..." She was the baby
we thought we would never be able to have, a "miracle" child who had weathered two threatened miscarriages, 27 hours
of labor and a Caesarian delivery just to be with us! Despite everything, she was a beautiful, healthy, active baby
born on September 11. She became our "911 Baby" nine years before terrorist attacks took away some of her joy in
her birthday.
By the time our daughter was four months old, we noticed that light brown spots the color of common birthmarks were
appearing on her limbs and torso. Two months later we were told that the spots were a symptom of Neurofibromatosis,
an incurable genetic condition, and that they couldn't confirm the diagnosis until more symptoms appeared. We had
never heard of "NF," and after the doctor explained that it was once thought to be the "Elephant Man" disease, it
was pretty hard to fully comprehend anything else. It was devastating to realize that, over time, our little girl
could be disfigured by huge tumors or covered by small ones, that she might face a lifetime of health problems and
emotional struggles. Words can't really describe our despair.
After a flurry of baseline exams, the doctors told us that she had no other symptoms. However, a few months later a
second symptom appeared and the diagnosis was finally confirmed, dashing our hope that she might be spared. Various
pediatric specialists followed her, but there were no other physical symptoms until she was four, when an eye exam
revealed several problems. An MRI confirmed that she has a bilateral optic pathway glioma. The dreaded word "tumor"
became part of our world, and we were told that it was inoperable because it had already penetrated the brain. One
group of specialists talked of survival rates and lengthy chemotherapy. Thankfully we sought a second opinion from
a doctor who actually had experience with NF and optic gliomas. He encouraged us to repeat the MRI in two months
and to only start chemotherapy if it appeared that the glioma was growing. Nearly seven years and seventeen MRIs
later, the glioma is essentially unchanged!!
While chemotherapy hasn't been necessary, the glioma has still caused problems. Our daughter's vision was damaged
and she has had surgery on some eye muscles to improve the affected eye's alignment. When she 2was only five she
started showing intermittent symptoms of precocious puberty. After careful monitoring we eventually intervened with
hormonal therapy, but it meant that she received painful intramuscular injections for over two years. Even so, only
some of the symptoms could be reversed.
As is the case with many children who have NF, our daughter has ADHD and a learning disability which affects her academic performance. She also has a nonverbal learning disability which impairs her social interactions - she misses body language and other cues that hinder her ability to "fit in." She noticeably lags behind her peers in performing typical childhood activities, such as skating, riding a bicycle and playing with a ball. All of these challenges affect her self-esteem and, at times, deprive her of some emotional comforts that all children find in having friends. She often refuses to talk about any aspect of her condition, apparently seeking refuge from overwhelming problems by ignoring their existence as much as possible. Together with a psychologist we are trying to help her find a more positive outlook on her life.
Our daughter is very bright, and funny, and she has a generous heart. She is always sensitive to others who are hurt or who have problems. Within our extended families and among those who have come to know her, she is greatly loved!
