The long term outlook for Brandi is not very good. She was born with a cleft palate, a hole between each of her ears and her brain, a heart defect, and coloboma in both eyes. In addition to her physical defects, Brandi suffers from muscular hypotonia (floppy muscles), poor coordination, developmental delay, balance problems, and delayed reflexes. She cannot crawl or walk and has difficulty reaching for objects.

Brandi has already undergone several surgeries to correct her more life threatening defects. In July of 2003, she had open heart surgery to correct a defect in her heart. She has also undergone multiple surgeries to correct her cleft palate and ears. Although not visible from the outside, when Brandi was an infant, she had a difficult time sucking a bottle and would frequently choke on her tongue due to a hole between the roof of her mouth and nasal passage.

In addition to this, Brandi is profoundly deaf and also has eyesight difficulties. She wears two hearing aids and two pairs of glasses. Brandi’s eyes do not have the ability to adjust to bright light. As a result, she is required to wear dark tinted glasses on sunny days. Brandi also suffers from a problem with her kidneys known as RTA (Renal Tubular Acidosis). Basically, her kidneys do not filter the acid from her blood, resulting in poor growth and failure to thrive. At 3 1/2 years of age, Brandi is only 25 lbs, despite having a very good appetite.

Brandi sees many doctors both locally and in Halifax. In Cape Breton, she is seen by her pediatrician, physiotherapy, occupational therapy, an early intervention worker, a hearing specialist, a speech therapist, and representatives from the Atlantic Provinces Special Education Authority (APSEA). In Halifax she is followed by a plastic surgeon, a cardiologist, a nutritional expert, an Ear-Nose-and-throat specialist, an audiologist, a kidney specialist, a genetic specialist, a dental surgeon, an eye specialist, as well as the Halifax chapter of APSEA.

As you can well imagine, looking after Brandi is a full time job. She makes regular trips to Halifax about every two months. We don't know what the future holds for her, but specialists have told us that she will have very serious developmental problems. This, combined with poor muscle control, balance problems, and communication difficulties will make her life a challenging one.