Tag: Rubella

Life and Deaf – A Deaf Son

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Scooter

Today my husband and I sit with the audiologist and otologist at the Shands Speech and Hearing Clinic in Gainesville. Our 1 ½ year old baby boy, Scooter is on my lap, happy to be out of the sound and stimulation proof cell; happy to have the headset off. The doctor tries to exchange pleasantries but we’re not concentrating, sad little smiles plastered on our faces. He clears his throat and tells us, “ your son is profoundly deaf.” The nagging suspicion we’ve had is confirmed. The shock of the present blocks the past and the future. First there’s a feeling of relief – of knowing something definite. Next we get commiserations – “I’m so sorry. With Rubella it could have been much worse; blindness, brain damage.” We try to listen to results – “90dB loss, both ears, a little residual hearing that can be amplified.” Advice – “Get a hearing aid on him right away. Learn all you can about deafness. There are many options. I’ll give you the address and phone number of the St. Augustine School for the Deaf and Blind.” Oh my God, not an institution! “And last but not least think about having another baby. Another child in the house will probably be the best teacher your son could have.”

Any questions? “Yes. No. Lots. None.” We can’t assess any of this yet. We ride home in outward stillness, our minds running crazy inside, with our bouncing beautiful, unbothered baby boy. He hasn’t changed. Only we have. We bring him home to our new house in Ormond Beach. I feed him, play with him, tuck him into bed and burst into tears.

I go through all the emotions of the stages of grief:

  • Denial. He’s fine.
  • Pity. It’s not fair. Why me? It’s too hard. Where do I start? This creeping dreadful possibility of the last two years has finally manifested itself upon us, no matter how intensely I denied it and shoved it away.
  • Guilt. I needed to wallow. If I hadn’t been teaching with a bunch of sick kids.
  • Anger. The kid I got rubella from – why did his incompetent doctor-grandfather allow him to go to school during a rubella epidemic?
  • Bargaining. Please God I’ll do anything.  Don’t let this be true.
  • Depression. Why me? nothing’s going to be okay. What have I done to my child?
  • Acceptance, “I can’t fight it, I’d better prepare.”

Then comes a raging drive to fix him, to help him make it in a world he can’t hear. How can he learn to talk if he can’t hear? Infants learn by imitation. A picture forms in my mind – a little boy holding a tin cup with a sign around his neck “deaf and dumb”. A horrible stereotype. Never! Not my son!

Now I have a mission. First the audiologist fits him for a single hearing aid in the ear with a little residual hearing. He’s a baby. He’s irritated with all the fussing and poking. When the aid, about the size of a playing card only thicker and heavier, is finally “attached” with a harness that looks like a bra except there’s only one “cup” for the aid, all he wants to do is rip the whole contraption off. He’s young enough not to be embarrassed, but too young to understand the importance of this uncomfortable gadget. While he’s getting used to the aid and the new sounds he’s hearing I start researching and studying.

Next time: Choices.

 

 

Rubella Jill

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Ft Bliss Texas – Part Two

From Wikipedia, “There was a pandemic of rubella between 1962 and 1965, starting in Europe and spreading to the United States. In the years 1964-65, the United States had an estimated 12.5 million rubella cases. This led to 11,000 miscarriages or therapeutic abortions and 20,000 cases of congenital rubella syndrome. Of these, 2,100 died as neonates, 12,000 were deaf, 3,580 were blind and 1,800 were mentally retarded. In New York alone, CRS affected 1% of all births. In 1969 a live attenuated virus vaccine was licensed. In the early 1970s, a triple vaccine containing attenuated measles, mumps and rubella (MMR) viruses was introduced.”

Staring at myself in the mirror, tears running down my spotty face, getting rashier by the second. I call Ray.  “It’s German Measles”.

“Don’t get upset. It could be something else. Let’s get you to the doctor. Then check at school and see if any kids have it.”

I scream, “It’s fucking German Measles!” My mind empties. I can’t focus. My heart slams against the mesh of my lungs, vibrating the rash all over me, burning my skin, my eyes. Sucking my tears dry. I wade through the weekend making calls for help. Nobody can. The principal says “your student Bobby’s sick. His grandfather, who’s a doctor, said he’s come down with Rubella.” I moan. Why did he have to be in my class, the only pregnant teacher in the school?

”The base clinic says, “Come in Monday for a Gamma Globulin shot. It’s all we’ve got.”

I reply trembling, “Let’s do it.”

I sit in the waiting room. Looking up, away from myself, I see several obviously pregnant women surrounding me. A scene from a recent “Monkey Virus Infects the World” movie flashes before my eyes. I jump up to the desk. “I can’t stay here.” I whisper. The whole place ‘ll panic. I’ll get stoned. I mouth “German Measles.” They grab and isolate me in an examining room. Typhoid Mary! Another blow. They jam in the needle of gamma globulin. I cry, “What good will it do?” They don’t know. Maybe stop the rampage? Maybe nothing?

I  falter, check into abortions; only legal in two states, New York and Arizona. I can’t do it. I’m too late, too far along, too far away. The doctors try to be reassuring, “all the big stuff is developed by three months, except hearing.”

Living on base, finishing out the school year, preparing to leave Ft. Bliss, all is a blur, a void. My first child, that happy experience we haven’t really planned for, has taken a turn of foreboding.

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Ray studying the stock market at Ft. Bliss

It’s 1967. In the next few months our lives change drastically.  The first decision is Ray’s. Taking the lead from my father, a very successful investor, he’s been studying the stock market, during his years of armed service preparing for a short internship on Wall Street and the ensuing SEC exam. A family friend has offered him a job in Daytona Beach, Florida with the prestigious firm, Merrill Lynch, pending his successful completion.

A bout of morning sickness makes me fully aware of my pregnancy in all its glory and distress. Being of strong body and positive nature I keep my apprehensions at bay and concentrate on a healthy beautiful baby. After a short visit home with our families on the Gulf Coast we cross the state to begin our new life and find a sweet house in a family neighborhood half a block from the beach. I find an OB/GYN who tells me not to worry my pretty little head about the German Measles epidemic. Everything will be fine. I want to remain in the sheep-following stage of the 50’s, wanting to believe the “Doctor knows best”, and ask no more questions.

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Cars on Daytona Beach

Although student protests are beginning, first over segregation, then over the war in Viet Nam, Texas and Florida lag behind. The schools in Florida are just beginning to integrate. The medical community lags too. At Halifax Hospital where my son is born on Oct. 21, fathers aren’t even allowed on the Obstetrics floor. They have to wait in the lobby downstairs. I’m given a shot of painkiller as soon as the labor is strong and regular. No one asks me if I want it. Natural childbirth is out of fashion with the advent of strong painkillers. My one question about the possible damage to the fetus is answered with, “We’ll do a hearing test along with the other birth assessments.”

Next Time – Child Birth