As parents of children with hearing loss, we have many things in common - and one important one is our stories about first learning that our children are deaf or hard of hearing. The following is the story of Lyn Bopp's family upon learning about their firstborn son, Cameron, and his hearing loss. Lyn is the Unilateral Hearing Loss Parent Representative on the state Board for Hands and Voices.
Cameron was planned! We did everything right. I took the vitamins, ate all the right foods, drank purified water, exercised appropriately, and enjoyed every day of my pregnancy. I considered morning sickness a privilege! (Really!) All those tedious tests revealed only a healthy growing baby. Nothing indicated any kind of syndrome or birth defect, so my OB advised against an ultrasound (which may not have necessarily revealed the deformed right ear anyway).
On April 17th, my baby was overdue and I was induced. When Cameron emerged into the world, all I wanted to know was "girl or boy?" Instead of making the traditional announcement, my OB held him up and showed me the skin flaps where his right ear should have been. I had to ASK whether I had a pink one or a blue one. At first glance, it appeared that his ear was just folded over and would uncurl on its own, or at worst, would just need to be clipped. A few minutes later, my husband was out of the room showing our new baby to his proud grandparents while I lay on the delivery table. It had been a long, difficult day and I was alone in the room with the nurse. I was still shaking from pain and hunger and I couldn't wait to dig into the plate of chicken and potatoes on the bedtable next to me. That's when the nurse dropped the first bomb on me. She said, "It's normal and okay to grieve and to blame yourself when something like this happens." Those words sent me into a tailspin that didn't end for over a year. I was so happy to have a baby boy and it hadn't even occurred to me yet to blame myself for anything. I began asking questions, but she had no answers. So when my OB came back in, I bombarded her with questions in desperation. She offered her sympathy and referred me to my pediatrician.
Later, in the recovery room, the three of us were sleeping. The pediatrician on-call entered the room, flipped on the lights, introduced himself, and took Cameron from my arms. He laid him flat on his back and stripped him naked to evaluate his condition. He handled my baby like a dead animal, flipping him around and making presumptions without first conducting any tests. He said, " Kids born deaf in one ear are usually deaf in the other. The ears develop at the same time as the kidneys. We'll check to be sure he has kidneys and hope that he soon urinates. With this type of birth defect, children usually have syndromes. He may have something that can be diagnosed soon or it may show up years later." And with that, he left us with a screaming, naked baby with probable multitudes of unknown problems. Eric and I were devastated. Our lives would never be the same and our questions and feelings of responsibility for this child grew exponentially with every passing moment. There was not much sleep to be had for some time.
The next day the newborn hearing screening was conducted and his left ear passed! Much relief! He had urinated overnight and a sonogram revealed two normal kidneys. At least we finally had some GOOD news about the birth of our first child. Our chosen pediatrician visited us that day and was kind, understanding and interested in helping us on our journey with Cameron. But still reeling from the nurse's words and the news given us the night before, not to mention hormonal overload, I was the most depressed I'd ever been in my life. While Cameron was in the nursery and my husband was out getting lunch, I reached out for help to the nurse on duty. She came in to check my vitals while I was crying uncontrollably. I said, "I don't understand how this could have happened! I did everything right! I didn't drink soda or even take Tums or Tylenol while I was pregnant! What did I do?" She had an opportunity to comfort me or at least refer me to someone who could help me, but she took another road. She replied, "Whoa, look, I can't relate to any of this. I had three perfectly normal children." And she left the room. It's a good thing I'm not the suicidal type!
The next year was filled with anxiety, pressure, and the desire to protect my baby from the rest of the cruel world. When would this mystery syndrome show up? Will he be retarded? Will he have a normal life span? Will he lose the hearing in his other ear? Will his kidneys eventually fail? What else could be wrong and what did I do to cause it?
With the help of my lactation consultant, Boulder County Mental Health, my pediatrician, and the internet, we survived the first year.
Our otologist informed us that Cameron had microtia; a random birth defect occurring in one of every 10,000 births. Microtia affects the middle and outer ear where the skull grows through what should be the ear canal and the middle ear is deformed. Cameron's inner ear is intact and there is promise for improved hearing in that ear following reconstructive surgery after age 6. Cameron reached all his developmental milestones on time or early and self-education - thanks to the internet - gave us some peace of mind.
Cameron is now a vibrant six-year-old with a sidesplitting sense of humor and a voracious appetite for reading and math! He is very excited to be embarking, this July, upon the first of five reconstructive surgeries to reconstruct and repair his ear and hopefully restore some of his hearing. He knows nothing of the trauma and negativity we experienced on what should have been the happiest day of our lives. Fortunately, mine is the worst story I've heard and hopefully the education of hospital staff has improved to prevent this kind of ignorance and inappropriate treatment of people who just need help and support in a time of grief and confusion. If you have encountered unethical and ignorant behavior in the professional community, I urge you to offer constructive feedback to the misguided caregiver in person, on the phone, or by letter (even if it's anonymous) so that we can help to end the ignorance and promote compassion.
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