The Boy Who Was Born Again


Here in the land of palm trees and sage brush, it’s time to celebrate spring, when dazzling brush strokes of wild flowers blanket our hillsides in the most brilliant display of color that nature has to offer in these parts.  The wild flowers are not only symbolic of spring, they are, for me, a joyous reminder of the birth and rebirths of my oldest child.

Stuart was born April 17 1992, a Good Friday-Passover,  with VACTERL Syndrome, the most significant symptom of which is a tracheal-esophageal fistula. Translated: his trachea was attached to his esophagus rather than his stomach. Doctors operated for 10 hours on April 18th to disconnect his trachea from his esophagus, stretch it out and connect it to his stomach. He was then transferred to the ICU where he spent three weeks in recovery.

I, on the other hand, was sent home exhausted from 36 hours of labor and delivery, followed by a sleepless night and waiting through Stuart’s surgery.  So perhaps I was hallucinating, but I would swear that as Stuart’s dad and I drove home from the hospital, leaving our newborn behind, the wildflowers that grew along the side of the freeway were three dimensional. I remember staring at them out the car window as if seeing flowers for the first time. I actually raised my hand and reached out to touch one, just as you might do in a 3-D movie. I had a baby boy. He was alive (if not well), and the world had never appeared more beautiful.

Fast forward 10 years. It’s April 2002. Stuart’s plumbing is in need of new fittings so we take him to UCLA Medical Center for a fundoplication.  This involves pulling the stomach up and around the esophagus to tighten the sphincter and prevent the aspiration pneumonias that hospitalized Stuart every time he contracted a common cold.

Another five years go by. Stuart goes to Knott’s Berry Farm with friends and rides roller coasters all day. He comes home complaining of a headache. The next morning, and every morning thereafter for five months, he retches and vomits  into the toilet. He’s diagnosed with Chiari Malformation. Basically his skull is too small for his brain and his cerrebellum is spilling out the back side of his skull and wrapping itself around his spinal column.

We return to UCLA, this time for brain surgery. It’s April–again. Seven days before his 16th birthday. Again, another 10-hour surgery.  Again, Stuart is given a new lease on life. Or so we think.

Six months pass, and his headaches and vomiting return. We see more neurosurgeons, seek increasingly specialized advice, and learn more than we ever wanted to know about human anatomy. Stuart, who is studying biology in high school, creates a genetic matrix explaining why his problems must have come from my side of the family. This does not improve my depressed state, but I appreciate his trying to make sense of this hellish nightmare.

We find out Stuart has a new problem with his noggin. The second vertebra which usually serves as a keystone for the skull, has popped through the base of his skull and the bone is now pressing against his brain stem. The slightest head trauma could kill him instantly.

The head of neurosurgery at UCLA, who performed Stuart’s first surgery, tells us he wouldn’t touch this delicate surgery with a ten-foot pole. If you know anything about neurosurgeons, this is not reassuring. Stuart and I travel to Long Island, New York for a consultation, and then with other neurosurgeons in Chicago and Denver. None of them is willing to perform the life-saving surgery Stuart needs.

We discover that there are only two surgeons in the world who have performed the surgery more than a handful of times. One is in London undergoing chemotherapy for cancer. The other is in Iowa City, Iowa. We go to Iowa.  This time there are two surgeries; one through the soft palette of the mouth to remove the second vertebra from Stuart’s brain cavity. The second to fuse Stuart’s skull to his spine now that the keystone is gone. It takes the 68-year old surgeon 12 hours to perform the two surgeries. I’m so thrilled that Stuart makes it through that I unthinkingly send photos to all our friends and relatives of him in recovery intubated, and covered in diodes, blood, and iodine. Though many were upset seeing him this way, it was the most beautiful sight I’d seen since the wildflowers along the freeway some 17 years earlier.

Stuart’s stays in the hospital a month this go round. As if mother nature was playing tricks during our time in Iowa, there are three tornado touchdowns in our vicinity and an earthquake–in Iowa. But what I remember the most were tree buds, tulips and daffodils unfolding little by little each and every day–as if in a time lapse video. Just as each and every day, little by little, Stuart got better–as if in a time lapse video.

Once again it was April. The world was reborn. And so was my son.

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Amy Roost

Amy Roost’s passion is public health and policy. She earned a BA in political science from George Washington University and an MA in International Affairs from Columbia University in New York. Amy has worked as a press aide for Charles Percy, chairman of the U.S. Senate Foreign Relations Committee, and many non-profit organizations. She served as the Executive Director of the Chaparral Educational Foundation, the Del Mar Schools Foundation and The Thriver’s Network. In 2006, she founded Co-optimize, a business assisting independent bookstores across the country with various business services. She has spent the past several years developing and marketing the company’s proprietary software. Presently, Amy is moving in the direction of social entrepreneurship. As a blogger and marketing strategist, she hopes to speak for others whose voices are not yet being heard in the policy and research arenas.

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