Bella Cavallo became the face of Bella's Angels on September 2001. It was a day full of happiness, emotion, and unexpected anxiety. We were eagerly awaiting the arrival of a healthy baby girl.
Bella was born 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. A NICU doctor with a foreign accent made it 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. Her first month of life, Bella had 19 doctor appointments with many 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”.
Bella has had her share of setbacks and medical interventions. To date she has had 19 surgeries for multiple problems and countless, difficult procedures. Bella is profoundly deaf and was implanted with a BAHA at age 6 ½. Bella also had a feeding tube in place since 13 months old which was finally removed in November 2013. While some of Bella’s primary care team is here in Florida, we also had to form an extensive medical/surgical team up in Boston. All major procedures and surgeries are done at Massachusetts Eye and Ear Infirmary. 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. Only 1 in 10-12,000 babies are born with this rare genetic syndrome and we were lucky enough to have been given Bella!
We thank Bella’s Angels for allowing us to get our daughter the specialized care she desperately needed regardless of where we currently live. Bella’s quality of life has greatly improved as a result of this medical care that would be untouchable to us without their support.
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 every day 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!