When Six Months Is a Lifetime

By Linda A. Prussen-Razzano

Featured Rightgrrl April 1999
April 14, 1999

In March of 1993, my brother, Richard, and his wife, Linda, eagerly awaited the birth of their second child, Eric. They already had a precocious, intelligent, and lovely two-year old daughter, Heather. We expected Linda to deliver Eric with her usual savior faire; as a top level gymnast and gymnastic coach, she was in prime condition. I remember her jokingly advising that her knee surgery "was more painful" than Heather's delivery; moreover, her pre-natal check-ups and pregnancy were seamless.

Sadly, we were wrong.

I can still remember my mother calling me at work. Her greeting, while affectionate, was tinged with somberness. "Linda had the baby."

The anticipated level of joy was noticeably missing from her voice. "Mom, what's wrong?" I gulped, swallowing the lump of anxiety rising in my throat.

"It's not good, honey," she murmured, choked. As she proceeded to tell me the details, my boss, Anthony, looked on in growing concern. By the time I hung up, I could no longer contain the tears. Little explanation was required. My effusive face said it all.

Linda had been well past her due date, so the doctors induced labor. The delivery was traumatic. Eric was 9 lb. 10 ounces at birth; because of his large size and Linda's forced dilation, the doctors broke his shoulder bone pulling him out. For some 45 minutes, Linda received stitches to stop the hemorrhaging. My usually unflappable brother was externally composed, but I could smell the coppery tinge of confusion and anxiety when I stood close to him.

Almost immediately after being born, Eric began to seizure. The doctors rushed him from the room, several staff members fighting to keep him alive. By the time I got to the hospital, he was in the Neo-Natal ICU, tubes and needles sticking out of his pump baby limbs. They originally thought he had a brain tumor; however, the doctors later confirmed that the lump was not a tumor.

Eric had an underdeveloped cerebellum. Because of this condition, all his little body's involuntary functions were not regulated. He suffered from apnea, both awake and asleep; he needed a respirator; he was unable to coordinate his suck, swallow, and breathe reflex. He had seizures, reflux, and diabetes insipidus. He was fed through a tube in his stomach. All totaled, he spent three months of his life in the hospital.

Linda, Rich, my mother, and Linda's mother all learned baby CPR. Linda registered her house with the local fire department for emergency power in the event of an outage and fought with insurance companies to cover the thousands of dollars in bills. Linda and Rich submerged themselves in literature on technologically dependent children. Heather named her new baby brother "Baldhead," and patiently tried to understand the difference between "sick" and "very ill."

My father had been away on business for several weeks while Eric was in the hospital. I can still remember sitting on the couch in the livingroom, talking with him about Eric's condition. My mother, who spent countless hours at the hospital, came in, sat down, and wept openly, fearful that he would spend the rest of his life in some sort of medical facility.

"Oh, Gail, it's not that bad," Dad insisted dismissively. As a staunch, often indomitable authoritarian, very little could unbalance my father. He undoubtedly presumed my sensitive mother was exaggerating.

"You come with me, John. You come with me to the hospital and see for yourself!" Mom insisted. She needed his strength, his reassurance; she needed his understanding…she was battling for her grandson's life.

When they returned a short time later, my father sat down on the couch, his face pale, shaken, and defeated. I could hear the tears in his voice long before they rolled down his cheeks. His words were chillingly solemn and full of despair. "If that little boy comes home, he will come home in a box."

Happily, we were wrong.

Linda and Rich didn't just want their son to live, they wanted to give him a life. Away from the hospital, he began to blossom. They took him everywhere…to the beaches at Fire Island, to an Indian Pow-Wow, to the dinosaur museum at Sands Point, to my bridal shower. They let him feel the grass under his belly, smell the flowers of the summer, taste the salt in the ocean air. We got to hold him, to kiss him, to have him rest his head against our chests and instinctively settled against our hearts. I saw, with my own eyes, how courageously he fought for every minute of life and how eagerly he returned our love.

I was at work when the call came that evening of September 13, 1993. Sitting amongst my bosses, married just over a month, I didn't think it odd that my husband would call. "That newlywed hubby of yours wants you home," my other boss, John, teased as he handed me the telephone.

"Honey, are you sitting down?" my husband asked.

"Yes," I assured him.

"I have some bad news."

Since we had been having trouble with the bank and merging our two accounts, this was the first thought that popped into my head. "Okay…."

Ironically, I didn't expect it. It took me totally, completely by awful surprise. The thought was always there, somewhere in the shadows of my mind, that Eric might not be with us for very long; I vainly believed that I had armored my heart against loving him too much.

Every year, I think to myself, he would be "this many" years old now if he had lived. He would be "this big" if he had lived. He would be so many things if he had lived. To this day, I still cry when I talk about him.

I used to be pro-choice. I used to think that an unborn baby was a fetus. I used to think that a severely deformed child would be better off not being born. I used to think I knew what life was all about; that I had experienced enough "living" to take these kinds of moral stances. Eric proved me wrong.

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This article copyright © 1999 by Linda A. Prussen-Razzano and may not be reproduced in any form without the express written consent of its author. All rights reserved.