Before and After Zachariah

Joe: For today’s Fern and Joe column I step aside and let Fern speak on her own.  This photo was taken years before we were married.  Fern wrote and spoke often about families who had special needs children. What she says here can only be authentically addressed by someone who, like a veteran of war, has “been there.”                                   

Fern: That’s me.  And my son Zachariah. I was in my early thirties when this photo was taken and Zachy was about three. Redbook magazine sent a photographer from New York to Iowa to take our pictures to accompany an article I had written.   

Zachariah was born with Canavan Disease, a rare leukodystrophy syndrome that causes brain deterioration. Both his father and I carry the gene for this deadly disease, but so many years ago who knew? The lack of this one enzyme resulted in a beautiful blue-eyed boy who never walked or talked and was in diapers all of his days.

He lived in a children’s center (now called ChildServe) in Johnston, Iowa— a wonderful, caring place. I visited him often, getting next to him in bed, when he got too big to hold in my arms.

It was a beautiful day at the end of May when Zachy died right after his sixteenth birthday. A memorial was held in the sunny courtyard of the facility; we played the folk song “I’ll Fly Away” and then a dove was let loose. Staff at the center spoke about the joy they found in caring for him. I prepared a eulogy about the pain that parents experience when they have a child like Zachariah and expressed my profound gratitude to everyone who touched our lives.

Before I spoke, I took a deep breath and steeled myself, knowing that if I began to cry, I might not be able to stop. When I shakily returned to my seat, my college-age daughter hugged me and whispered in my ear: “You did great, Mom. But you sure sounded fierce.”

I’m seventy-six years old now and I still am.

During Zachariah’s young life, his father and I had to make awful decisions. Should Zach be put on a feeding tube when he could no longer swallow? Should he have an operation for the scoliosis that was curving his body? Should we give permission to place a “Do Not Resuscitate” sign above his bed?

Choices. None of them “right.”  Choices.  And none of which should be made by politicians!

Early on in Zachariah’s diagnosis, our family had consented to participate in medical research to help find the missing enzyme which causes Canavan Disease.  We collected urine and blood samples and skin grafts from all of us and sent them to labs around the country. The day Zachariah died, his body was shipped to New York so the researchers could perform a brain biopsy. The plans for all of this were made in advance. I wonder what someone might think overhearing the many phone calls I made back then, arranging for an autopsy on my still-living child?

Years later, doctors and scientists finally isolated the gene. Canavan Disease is similar to Tay-Sachs – an equally horrific syndrome that ends in childhood death.  These diseases cannot be cured, but there are genetic tests for parents who carry lethal genes. Today there is an amniocentesis for a fetus that might be affected. It has also been legal in this country for the choice to terminate the pregnancy.

 After Zach died, I was at a conference for genetic diseases, sitting on the dais with three doctors. I was proud of our family’s part in medical research. At that conference, the presenters all had nametags stating our professional status. The doctors and scientists were affiliated with medical schools and hospitals. My name-tag said simply: Zachariah’s Mother.

Fifty years later I can hardly believe that Roe Vs, Wade was over-turned in this country. And I am furious that our government is involved in private, personal decisions between a woman and her doctor, whatever stage of pregnancy a woman is in.

Choosing a late-term abortion must be unimaginably painful. But can there be any woman who wakes up one day in the seventh month of a pregnancy and says, "Oh, I forgot to get an abortion?” A woman who terminates late in pregnancy most certainly wanted her child. She probably has a crib picked out. Most likely she already has a name for her baby. And then she found out there was something truly, horribly wrong. Perhaps her own life was in danger. Or her baby was missing a brain.  Or perhaps that baby was slowly dying inside her. Why should anyone beyond the woman and the medical community be involved in the decision to end a pregnancy?

Abortion is still legal in Iowa. For now. But Governor Kim Reynolds, is trying to revive the “Fetal Heartbeat Law” which bans abortion where a heartbeat is detected in any fetus – often earlier than many women know they are pregnant.

Attorney General Brenna Bird is backing a lawsuit that would remove Mifepristone, the “abortion pill” (also used for early miscarriages), from access throughout the country – also in states where abortion is legal. Bird signed an amicus brief seeking to cut off access nationwide. The lawsuit argues, on behalf of anti-abortion organizations, that the U.S. Food and Drug Administration exceeded its authority when it approved Mifepristone to end pregnancies in 2000. 

And, not to be outdone to push Iowa back to the 1950’s, Luana Stoltenberg (R-Davenport) said she hopes Iowa will pass a “life at conception” bill.

What has this state become?

I am pro-science and pro-choice and pro-family and pro-ethical decisions made by grown-ups. Life is complicated. Choices women have to make are often painful and personal. And abortion is one of them.

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Iowa Writers’ Collaborative Columnists 

Laura Belin: Iowa Politics with Laura Belin, Windsor Heights

Doug Burns: The Iowa Mercury, Carroll

Dave Busiek: Dave Busiek on Media, Des Moines

Art Cullen: Art Cullen’s Notebook, Storm Lake

Suzanna de Baca Dispatches from the Heartland, Huxley

Debra Engle: A Whole New World, Madison County

Julie Gammack: Julie Gammack’s Iowa Potluck, Des Moines and Okoboji

Joe Geha: Fern and Joe, Ames

Jody Gifford: Benign Inspiration, West Des Moines

Nik Heftman, The Seven Times, Los Angeles and Iowa

Beth Hoffman: In the Dirt, Lovilla

Dana James: New Black Iowa, Des Moines

Pat Kinney: View from Cedar Valley, Waterloo

Fern Kupfer: Fern and Joe, Ames

Robert Leonard: Deep Midwest: Politics and Culture, Bussey

Tar Macias: Hola Iowa, Iowa

Kurt Meyer, Showing Up, St. Ansgar

Kyle Munson, Kyle Munson’s Main Street, Des Moines

Jane Nguyen, The Asian Iowan, West Des Moines

John Naughton: My Life, in Color, Des Moines

Chuck Offenburger: Iowa Boy Chuck Offenburger, Jefferson and Des Moines

Barry Piatt: Piatt on Politics: Behind the Curtains, Washington, D.C.

Macey Spensley, The Midwest Creative, Davenport and Des Moines

Mary Swander: Mary Swander’s Buggy Land, Kalona

Mary Swander: Mary Swander’s Emerging Voices, Kalona

Cheryl Tevis: Unfinished Business, Boone County

Ed Tibbetts: Along the Mississippi, Davenport

Teresa Zilk: Talking Good, Des Moines