“At our 11 week ultrasound, a very astute technician noticed excess fluid near our baby’s brain. Strangely, she had recently read about diagnosing this condition in a medical journal. She called for a doctor and we then learned that fluid was filling a small cavity of our baby’s head, a spot where soft brain tissue was supposed to be. We were told that it was too soon to know for sure if there was a problem and that the doctors would keep a watchful eye. Until this point, everything seemed fine and we were excited to be expecting our second child, however, we would soon find out that we were now firmly belted into an emotional roller-coaster, with MRI scans, genetic tests, and other specialist appointments at every turn.
At 19 weeks gestation, it was confirmed that our baby had a condition called Agenesis of the Corpus Callosum, or ACC. The effects of ACC are largely dependent on the presence or absence of other medical conditions. No two cases are the same and the spectrum of possible conditions is broad. So although the medical prognoses we received never sounded even remotely optimistic, we held out hope that our baby’s ACC was an isolated condition. If our daughter were very lucky, she would lead a normal life with many challenges and some struggles. If she were less lucky, she might never walk or speak, and would require constant care. Our sweet, tenacious, cheerful little angel, Ava Grace, was born in March of 2007. initial meeting with Julie, our social worker. At the time we didn’t realize how blessed we were to have her; we were clueless and overwhelmed and remain grateful for the guidance she provided. She was able to anticipate Ava’s service needs and armed us with the knowledge we needed to advocate and open up doors for Ava. Over the years, Ava has received a full range of services including Infant Development, Blind & Low Vision support, Physiotherapy, Occupational Therapy, and Speech Therapy.
One of our happiest moments was receiving news that Ava was accepted into the OCTC Preschool. At preschool, Ava’s therapists would come to her and the preschool staff would be trained on how to support Ava’s development. We would later learn that the special ingredient that distinguishes OCTC from most preschools is “Unconditional Love”. Ava’s four years working with OCTC therapists have brought many wonderful surprises. The therapists at OCTC have provided Ava an environment necessary to allow her to develop her brain and her abilities.
- At 19 months, after 10 months of trying, Ava clapped her hands for the first time.
- We were told she might never walk, she took her first wobbly steps at age 2.
- We were told that she may never speak, she spoke her first words at 3.
- We were told she might never be able to feed herself, she loves making muffins and helps herself to the refrigerator.
- We were told she might have poor social skills, she shows empathy and awareness of others, and never stops smiling.
In September, Ava started Junior Kindergarten at the OCTC Elementary School. Although we were hesitant to let her go, she was ready. Ava loves school. She is excited to share her experiences and what she has learned each day.We are very grateful to have the support of OCTC staff, therapists and physicians as we continue our journey of discovery. Ava continues to amaze us. We will continue to expect the unexpected We feel fortunate to live in Ottawa and to have access to the care and services provided by OCTC.”