An Excerpt from A Mother's Heart: Waardenburg Syndrome

I was pregnant with my son, Theodore, (who we call Teddy) during my fourth year of optometry school, and he was born a week after my California State Board of Examination for optometry. I had to travel 400 miles to the University of California in Berkeley for two days of Board examinations. My obstetrician prescribed a medication to prevent me from having contractions and giving birth during the stress of traveling and examinations. 

When it was time for me to bring my child into the world, my labor lasted 24 hours, and Teddy was finally born by C-section. He was over eight pounds, and had ten fingers and ten toes. He was perfect in my eyes... our first born. The euphoric and miraculous feelings overflowed. I held him in my arms, nursed him, barely comprehending that the living life I held in my tummy for nine months was here... sucking, kicking and making noises. Life was perfect. 

His sky-blue eyes were his most noticeable feature at birth. Some people asked us, “So, you put blue opaque contact lenses on your baby?” or “Can an Asian couple, both with dark brown eyes, have a blue-eyed baby?” Others whispered quietly behind our backs... “Who was the mailman?” 
Once I brought Teddy home from the hospital, I noticed that he could sleep through the noise of the vacuum cleaner, and loud laughter during family gatherings. 

“What a great baby with a nice temperament!” friends and relatives commented with envy. 

But to me, every expression of envy from others became a disturbing voice deep inside me. First, so soft that I could barely hear; then louder, then shouting inside my head. It manifested itself. These voices were the first indications that my Teddy was "not quite right.” 

I expressed my concerns to his pediatrician during his sixth month well-baby check-up. The pediatrician performed the necessary tests on his hearing, and dismissed my concerns. I obsessively repeated the tests at home, but the results were inconsistent. At Teddy's ninth month well-baby check-up, I raised my concerns again. I begged and pleaded with his pediatrician, to be more precise. He gave in and referred me to a pediatric neurologist for Brainstem Auditory Evoked Response (BAER). The test was done in a university hospital lab on a sunny Spring afternoon. 

How could anything go wrong on such a beautiful day? The self-pep talk did not ease my killing heartburn. 

I was in the fourth month of my second pregnancy, exhausted and cranky. Fortunately, my husband volunteered to be the driver that day. At the end of the test, the neurologist told us, “If he were my child, I would not worry about it.” My husband turned and winked at me with a look that said, “See? I told you. You are being neurotic. You always worry too much!”

Being right was not my goal. All I wanted was to know the truth. In fact, I didn't want to be right. 

I constantly checked my textbooks - yes, call me obsessive, if you like. I understood that there were various milestones a baby needs to go through. At six months, Theodore made babbling noises, but, by nine months, the noises stopped, and he had become completely silent. Wanting so badly to believe he was OK, I talked to him, played music to him, sang to him, and taught him to say, “Mommy, Daddy” whenever I was with him. Teddy blinked his brilliant blue eyes, smiled at me and imitated my mouth movements... but no sound came out. 

My heart sank deeper and deeper, until it immersed into a black hole. I wanted to believe that the doctors were right.

They've had decades of schooling and training, passed numerous testing and board exams. They’ve had years of experience practicing medicine. 

They must know what they are doing, right? They're professionals.

However, Teddy did not demonstrate any sign of hearing. He continued to be silent. 

I pushed the stroller and walked like a penguin into the pediatrician’s office for his one-year-old well-baby checkup. Because I hadn’t given my uterus a break between pregnancies, I looked like I was having twins. I didn’t care. 

I bugged the pediatrician again. He glanced at my well-expanded tummy and nodded like a bobble-head. This time, he referred Teddy to an audiologist. 

It was a month before my second baby was due, a hot and dry September day in Southern California. Teddy could not walk yet. I did not have room for him to sit on, so my husband had to hold him on his lap while they did the sound test. The BAER test was performed at the audiologist's office, in a well-controlled sound booth. After the test, the audiologist had us sit in his office while he studied the result. His diploma and credentials were displayed on the wall: impressive and intimidating. We waited for his pronouncement, and the time seemed to stretch into eternity. The air conditioning was in full blast, but I felt the cold sweat on my body. I hugged my arms tight.

Finally, the audiologist came in and sat down in front of us. With a confident and calm demeanor, he delivered the verdict in a straightforward manner. 

“Your son is profoundly deaf.” He rephrased, “Teddy has the so-called Corner Audiogram. He could possibly feel vibrations, rather than hear actual sounds.” Then, to drive his point, he added, “With the degree of his hearing loss, do not expect him to call you Mommy or Daddy in words.” He handed us some pamphlets and copies of resource information. He shook my husband’s hand, and we walked out. 

The hot air hit us. The sunshine was blinding. Inside, I felt like I was in the north pole. 

I was sad and angry, even though the result was not shocking or unexpected. I was angry that the whole universe did not show a shred of remorse for my son’s deafness. My husband seemed so calm and in control. My fears were validated, but that was not what I wanted.

I blamed myself for my son’s deafness. I should not have studied so thoroughly for my board exam. Maybe I had stressed the fetus, and that’s why Teddy is now deaf. 

“God, please give my hearing to my son if you would,” I hugged Teddy tight and prayed. I cried. 

The thought of suing the doctors for malpractice ran through my system several times. However, how time and energy consuming would that be? I had neither. (Also, from a culture standpoint, filing lawsuits was not the norm, which deterred me from that thought altogether.) 

It was a month of chaos between the diagnosis of Teddy’s deafness and my second child’s birth. Teddy was referred to a children’s hospital for a complete check-up, to rule out other diseases associated with his deafness. The visits to different specialists seemed endless. Carrying Teddy in and out of the car seat became strenuous as my due day approached. 

Finally, we had a name for the mystery surrounding Teddy's eye color. He had a genetic condition called Waardenburg Syndrome, which was why he couldn't hear, and his eyes were a gorgeous blue.

It can be lonely raising a special needs child, 
but you are not alone.