Thursday, September 28, 2017

Batten's disease finale

Years of suffering — and months of struggling with the decision to end it — had brought them here: To a bright white living room where three of their children lay side by side by side, waiting to die.

Les and Celeste Chappell loved the children, of course, and the thought of letting them go was excruciating, but holding on was just as painful.

The children — Christopher, 20; Elizabeth, 19; and James, 15 — had been ravaged by a ruthless neurological disorder that, over the years, had stolen their ability to see and to swallow, to move and to remember. Life support was only prolonging the inevitable.

So one Thursday in July, at their home in Springville, Utah, the parents braced themselves for what would become a long weekend of death.

Three hospital beds were set up in the living room with the cathedral ceilings and high-reaching windows that let in the streaming sun.

The three children were made comfortable with morphine and lorazepam, a sedative used to control seizures, and their parents started to pray.

Then they stopped the tube-feedings and watched their children, one by one, silently slip away.

The obituary was a single notice, cataloguing all three deaths.

“Surrounded by family, Christopher Lamont Chappell, age 20, passed away Sunday July 16, 2017,” it read. “He was born December 13, 1996.”


“Elizabeth Anne Chappell, age 19, passed away Friday July 14, 2017. She was born June 21, 1998.”


“James William Chappell, age 15, passed away Saturday July 15, 2017. He was born October 20, 2001.

“Christopher, Elizabeth, and James were born to Lester and Celeste Chappell of Springville,” it read. “Each had for many years courageously fought a degenerative neurological condition, juvenile Batten disease.”

It was an unusual obituary — three siblings, three deaths, three days — that raised questions among those who knew nothing of the family’s circumstances.

But the local authorities had no reason to look into it; they knew it to be an incomprehensible tragedy for a family with a genetic curse — but nothing more.

Death had come quicker than Les and Celeste expected, they would later recall in a series of interviews.

The hospice team had told them that the three children might hold on for days or even weeks — which the parents were not sure they could endure.

But not long after noon that Friday — only hours after the tube-feedings stopped — Celeste watched Elizabeth take her last breath.

Afterward, Elizabeth’s parents and sentient siblings sat around her body for hours, sharing favorite memories about a girl who once played with princesses, but also loved to be outdoors.

Her father pulled out the Book of Mormon and read about the paradise where they believed she had gone.

When the mortuary eventually came to take her body away, Les and Celeste followed the gurney outside.

Then they went back in, to wait once again.

There had been 10 Chappell children in all, but Elizabeth was now gone, and two of her brothers were dying. Surrounded by family, the parents prayed quietly and constantly — pleading for strength, comfort and peace, and holding tightly to their belief that they would all be reunited one day in heaven.

By Saturday morning, James, who had struggled the most with juvenile Batten disease, had also died.

His mother sat with him as he took his last breath, then the family remembered a baseball-lover so devout that even after he had gone blind, he begged his father to toss the ball and tell him when to swing.

Again, the mortuary came to retrieve the body.

Again, Les and Celeste followed the gurney out to watch their son being taken away.

Again, they returned to their living room, where Christopher was diminishing rapidly.

The couple stayed up late that night, clinging to their son’s bedside, desperately trying to stay awake. They were physically and emotionally exhausted. “But how can I sleep when my babies are dying?” Celeste thought.

As the parents woke up early Sunday morning, Christopher, too, was fading.

“He’s gone!” his mother said, watching intently as the color drained from his face.

Family members shared stories about a boy who had loved toy cars and trains.

Again, the mortuary came — and again, Les and Celeste watched as another one of their children was carried away.

It had been unbelievably difficult, but it was done...

The devastating diagnoses robbed the Chappells of the dreams they held for their terminally ill children. Christopher — smart and curious, always asking questions — should have grown up to be a doctor, his mother always believed. Elizabeth was perhaps destined to be a gymnast, and James a ballplayer.

Instead, Les and Celeste watched them decline, grieving each loss as it came — seeing, walking, talking, eating, and then living.

But they tried not to let it overshadow life — finding moments of happiness and humor, even lovingly referring to the trio as “our three blind mice.”

Les, a software engineer for Sears Holdings Corp., and Celeste, a registered nurse and stay-at-home mom, had moved in recent years to Springville, about 50 miles from Salt Lake City, to be closer to family.

There, the parents had been tube-feeding Elizabeth and James, and had seen what it had done to them — helping to keep their ailing bodies alive, even though they had nearly shut down.

So when they had to determine how to care for Christopher, they decided not to intervene.

And it only made sense, they said, to stop the same treatment for Elizabeth and James.

The unfathomable decision had been made.

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