Thomas’ Pendred Syndrome

My son, Thomas, is hearing impaired. He was diagnosed with permanent bilateral hearing loss in early infancy. As one can imagine, as a first time mom, this news was both devastating and overwhelming. It was a very unsettling time as thoughts, questions and concerns of the unknown swirled in my mind constantly. As time passed, I learned to empower myself, my family, but most importantly, my son with the gift of knowledge and acceptance. We became members of an extraordinary family at the Montreal Oral School for the Deaf (MOSD), where we could share our experiences and concerns, our challenges and our successes; all while being guided by a team of caring and devoted professionals. I will forever be grateful to have these outstanding people and this fantastic Montreal institution in our lives. To have this support system so close to home is priceless.

Genetic testing identified that my son’s hearing loss was caused by a genetic disorder called Pendred Syndrome, and that in all likelihood, my beautiful baby boy, would loss all ability to hear in early childhood. The worry of this possibility consumed me at first, until I recognized I was powerless to the “if and when”, but I could choose to live in the “here and now”, day by day, and not fear what the future may bring.

It would be a lie to say, however, that I never stopped to consider the impact this would have on our lives. In the event my son lost his hearing, he would become a candidate for a Cochlear implant. This would not come without its own set of challenges. In the short time after losing his hearing and dealing with those complexities, my son and I would have the added emotional stress of leaving the comfort and security of our home, the proximity of friends and family, in order to travel for consultations, appointments and surgeries, not to mention follow-up visits. As a working mother of three in today’s society, the balance between work life, home life and extra-curricular activities is already laborious, not including the much needed weekly interventions with speech therapists, audiologists and occupational therapist my hearing impaired son already partakes in. My children have already come to understand that fairness and equality are not synonymous. The addition of any further stressor to our lives seems unfathomable. That being said, as a mother, I will always choose make the sacrifices necessary for the greater good of my household. For now, as I continue to live in the here and now, I can only dream that if and when this day comes, I will be able to have a family of doctors and specialists in the heart of this beautiful city I am proud to call home.