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Always in Their Heart

How they soared during the pregnancy--and came crashing down when they lost their newborn son. Now they hope to help other children with disabilities.


In all ways, a child was expected--awaited. The roots of their lives had grown to a place deep and firm, where the importance of creating new life lies. Catherine Curry-Williams was wed in antique-white satin, and Scott Williams wore a Scottish kilt. Their honeymoon in Italy was timed to facilitate conception.

Catherine, 39, had been married before but during that 10-year relationship never considered having children. It didn't become important to her until she was divorced, and her friendship with Scott grew into something more, into what seems now like everything more.

She is an actor, but acting has never been enough. She is an artisan / entrepreneur, but that, too, was not enough. She helped found and develop a recording company, Higher Octave Music, from her garage. In time, none of it was enough.

For Scott, 37, writer and story editor for the television series "Brooklyn South," family has always been important, but, still, he approached parenthood with the uncertainty that comes from realizing how much of his life had been spent parenting himself, wandering in search of his own path.

"I've always been a seeker," he says, "searching for a higher meaning of what I might be capable of and what my place in the world is. Never, before I met Catherine, did I have such a full vision or a better idea of what my place in the world is. Before I met Catherine, I had no idea."

They found a place in the world and in their hearts to start a family. Everything went as expected, almost as if they were in control of such things. By the time they returned from Italy to their home in the L.A. community of Valley Village, Catherine was pregnant.

What was not expected was a son. Branching off from their family trees, from Scott's sister and Catherine's three sisters were only girls--six in all. So word of a boy traveled quickly, and Shane Alexander Williams became, says Scott, "the prince among a string of princesses."

Also unexpected was Shane's stillness and the new focus their lives would soon take.

Throughout pregnancy, Catherine's and Scott's spirits soared each time they heard their son's heartbeat at the doctor's office. They were enthralled, peering at his movements on the ultrasound screen. His first kick was an unmistakable sharp jolt as Catherine stood in the kitchen on Thanksgiving Day, 1996.

Spirits soared ever higher on March 28 of last year, Good Friday, when Shane was born at Cedars-Sinai Medical Center. But there, then, was his stillness. Scott was told to cut the umbilical cord quickly. They had planned for Catherine to hold the baby first, and the hurried pace was unsettling. The doctor placed the baby on a table and gently shook him. "Come on Shane. Come on Shane. You can do it. Breathe."

Suddenly a neonatal intensive care team rushed in, and time seemed frozen in a flurry of movement and urgency. Tears of joy had not yet dried before the bottom fell out, and from the heights Catherine and Scott had soared, there was great distance to fall.

Shane was rigid and bruised, as he lay on a gurney, hooked up to a respirator. Doctors could only say that his condition was serious. There were more questions than answers: What was happening? How could this happen? Catherine had felt less movement during her last month of pregnancy, but the ultrasound hadn't revealed any problems.

Doctors suspect now that that is when the spinal muscular atrophy (SMA) set in.

It seemed like a cruel, terrible dream, but then Catherine and Scott saw the sadness on the faces of relatives and their embracing circle of friends.

"We were so in shock," Scott says, "but when we saw their expressions, we knew we weren't dreaming."

That night, the two of them curled up together in a hospital bed, afraid to think or speak, silently holding on.

During Catherine's pregnancy, Scott would sometimes sing to his unborn son, and one of the images he held of fatherhood was the day he would dance with Shane. When they were told Shane was paralyzed, unable to breathe on his own, Scott felt a familiar dark fear, which he has never understood. To see a child in a wheelchair is a stab to his heart. As hard as he tried to push it away, the thought entered his mind: "Maybe, he should go rather than live that way."

But then came reason.

"If he could begin to breathe on his own, if he could digest and swallow and do things on his own but was paralyzed, we'd bring him home. We'd build [wheelchair] ramps. We'd do whatever we needed to do for Shane," Scott says. "As long as there was hope, we would keep him on the respirator; and if he couldn't walk, I would adjust my beliefs around that. We would work it out."

The doctors' hope lasted a week. Catherine's and Scott's lasted all 14 days of Shane's life.

They had never heard of SMA. And they didn't know how to answer when asked how much time they would need before taking Shane off the respirator. It was one of many questions with no right answers.

"A week?" they asked.

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