Betty and Michael's Story

I’d never heard of Waardenburg Syndrome until my son, Michael, was born. My parents were deaf and I grew up with facial differences and a severe hearing loss in my right ear. I never realized that I could pass deafness onto my son and I did not know that my hearing loss and facial anomalies had any sort of genetic cause. When Michael was born, we were told within two hours that he was deaf.

My husband was just happy that we had a healthy child, while I was initially devastated by the news. I think that I was so upset because I knew how difficult his life could be; I didn’t want him to suffer the way I did. Growing up, it was very difficult to become close to my parents because of their deafness, and I didn’t want that sort of relationship with my own son. I was very self-conscious throughout my childhood and adolescence because my facial differences caused me to be teased by my peers. I worried that Michael would endure this type of emotional pain. I was also afraid that his hearing loss would inhibit him from achieving academically.

When Michael was one year old, an audiologist suspected that we had WS due to our facial features and hearing loss. We underwent genetic counseling to verify that we did have WS type 3. Based on pictures of my father, it was suspected that he also had WS. Receiving this diagnosis somehow helped me to deal with our differences. Until then, I never knew what caused my facial anomalies and hearing loss. Knowing the cause of our differences has helped me to accept them.

When Michael was three years old, we were at the grocery store together. At the time, he had hearing aids, which provided little amplification. A woman approached me at the store and asked about Michael’s hearing loss. She proceeded to tell me about the cochlear implant, which I knew nothing about. At first, I was against the idea of the implant; I thought that Michael was put on the earth to be deaf. However, we began calling and meeting with other families with children who had cochlear implants. My husband and I were astounded when we witnessed how these children were actually able to hear and speak, and we knew that the implant would give Michael an opportunity to succeed in life. Although the surgery was risky and frightening, we decided that it was the best option.

Until the time Michael received the implant, we had been using the total communication method with him. However, Michael did not pick up on signing, and we had become frustrated in his lack of progress. Someone then recommended that we attempt the auditory-verbal (AV) method, and we began meeting with an AV specialist. The AV specialist believed in trying whatever communication methods worked for the individual child, and she believed that Michael was capable of communicating effectively. She had faith in him, while the school system told us that he would not succeed. When he was five years old, we were told that he was apraxic and that the school system could do nothing for him. I continued to file complaints with the county, but to no avail.

We were finally given hope when we contacted St. Joseph Institute for the Deaf in St. Louis and they tested Michael. They determined that his cognitive functioning was normal and they believed they could help him to communicate successfully. We chose to move to St. Louis so that Michael could enroll in the auditory-oral school. We quickly determined that Michael did not have apraxia when he was speaking within the first few months of attending the new school. In the past few years that Michael has been at SJI, he has made substantial progress. Michael is now a happy, active nine year old boy, who loves school, has many friends and speaks in a way that I never imagined he would.

I still have my concerns about Michael’s future. I worry about the struggles that he will endure throughout adolescence and adulthood. I worry about the difficulties that his deafness and facial differences may cause him when he is mainstreamed. I worry that he won’t meet someone who will accept him for the caring, sensitive person he is and look beyond his WS.

Despite my apprehensions, I am extremely proud of the individual that Michael has become. He has made accomplishments that I never thought were possible. He is talking in complete sentences and speaks up for himself when he wants something. He used to allow his father and me to speak for him, but now he lets his wants and needs be heard. He is thriving in school and enjoys learning. His has had tremendous success with his cochlear implant and wants to be implanted in his other ear, as well. He loves playing with his friends at our house, summer camp and after-school activities.

Although Michael and I will continue to endure some hardships due to WS, I am actually grateful to have the Syndrome. Living with WS has made me an extremely strong person. I have learned how to be an advocate for my son and ensure that his rights are being upheld. Michael and I both have very warm, caring hearts, which is a characteristic that I think is probably true of most individuals with WS. Having WS has made me look at life differently: with optimism, without judgment and with compassion.

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