Bella’s Story
Bella made parents out of Jeff and me on September 22, 2001. It was a day full of happiness, emotion, and unexpected anxiety. We were eagerly awaiting the arrival of a healthy baby girl. My pregnancy was textbook—minor morning sickness in the first trimester followed by tons of energy and eager anticipation as we dreamed about our first child’s arrival. Routine tests and sonograms showed nothing out of the ordinary. In my 40th week of pregnancy, our baby turned breech and we were scheduled for a routine C-Section two days later.
Bella was born at 8:59 a.m. at West Boca Medical Center. She was lifted out and instead of happy cries “It’s a Girl” or “She’s beautiful”, the operating room fell silent. It was forever before we heard the weak whimper of Bella’s cry. She was taken to the NICU incubator in the operating room as the doctors and nurses began giving her oxygen. My doctors whispered as they sewed me up. A NICU doctor with a foreign accent made even harder to decipher behind his surgical mask muttered something to Jeff about Bella’s ears and that she would be going to the NICU for awhile. I told Jeff to go with the baby, broke into tears, and then blacked out.
I remember waking up to my doctor and Jeff whispering outside my curtain. They explained that Bella had some “anomalies” including low-set, asymmetrical ears and further tests were being done. I saw Bella for the first time around 3:30 in the afternoon when she was brought to my room on her way to her first MRI and CT scan. By then she had an EEG, EKG, genetic tests, as wells as an umbilical intravenous line. Original diagnoses suggested hypoplasia of the corpus collosum (in her brain) as well as various craniofacial deformities. Her first physical therapy session was at one day old because her body was so stiff and she couldn’t extend her arms and legs. She couldn’t swallow properly and a feeding tube was inserted in her nose. All in all, she spent a week in the NICU before we could take her home…three days after Jeff and I went home without our baby, she was finally allowed to leave the hospital with a list of follow-up appointments. Her first month of life, Bella had 19 doctor appointments with specialists and sub-specialists. It was certainly not what we had pictured life would be like with a brand-new baby.
As expected (but without an official diagnosis) Bella was very physically delayed. She entered the early intervention program at two months old and I began adding speech, feeding, physical, and occupational therapies to our daily appointment schedule. It was here that I learned to become an educated advocate for Bella and we were given such positive support from other parents of children with “special needs” and from the dedicated professional who work with these kids on a daily basis. Bella was enrolled at Easter Seals, Florida at 15 months for “developmental day care”. We called it pre-school…Easter Seals put a halt to a lot of our running around to therapies because she received all of them daily, including sign language instruction, right at the center. I thought I had died and gone to heaven! I never knew such a place existed and what a turning point this was in Bella’s progress!
Bella saw other children eating and suddenly her interest in food took off. She saw them cruising and walking around despite their disabilities and she too wanted in on the action. They would use sign language to get things they wanted and so would Bella, so much so that by the time she “graduated” the program in the Summer of 2004, she was fluent not only in signing but in lip-reading as well. I couldn’t believe it! It was all I could do to keep up!
Bella has had her share of setbacks and medical interventions. By age four, she had more than 10 surgeries for multiple problems and countless, difficult procedures. Bella has worn bilateral hearing aids for a severe conductive hearing loss since 11 months old and has had a feeding tube in place since 13 months old. She has had many ear and sinus infections that frequently keep her out of school for lengthy periods of time. While most of Bella’s primary care team is here in Florida, we have an extensive medical/surgical team up in Boston. All major procedures and surgeries are done at Massachusetts Eye and Ear Infirmary, the #1 hearing hospital in the country. We have narrowed our doctor’s list down and have assembled a very competent, caring group that helps us make sound medical decisions regarding Bella’s care. They have seen her grow and have seen us through some difficult medical situations. Bella was given an official diagnosis of CHARGE Syndrome in February 2005, after four years of speculation. She tested positive for the specific gene mutation known to CHARGE Syndrome and even though we have guessed all along that she had the syndrome, having an actual diagnosis has been a relief. Only 1 in 10-12,000 babies are born with this rare genetic syndrome and we were lucky enough to have been given Bella!
Our journey with Bella is nothing as we had expected it would be when she was born. She has truly opened our eyes to the beauty within and reminds us everyday to slow down and enjoy the process. She is an empathetic, compassionate, loving, and sweet little girl who enjoys all the things other little girl’s enjoy and believes she is no different than any of them either. We are happy about this! I invite you to try Bella’s approach to life!
