Wyatt Arnold swept into this world with a sweet smile and a disease that gave him precious little time.

His parents vowed to make his short life as happy as possible. Wyatt sat on Santa's lap, viewed the world on horseback and rode on a four-wheel all-terrain vehicle. He gazed at Christmas tree lights, stared a giraffe in the face and petted a penguin.

Wyatt died last Sunday at 5 months of age of spinal muscular atrophy, also known as SMA. Although it's rare, the disorder typically is described as the leading genetic, or inherited, killer of children younger than 2.

Parent screening for the gene mutation is available through a blood draw. But the lab work costs several hundred dollars, and the American medical community is divided on whether doctors should offer the test to all couples planning to start a family.

Wyatt's parents said that if doctors had suffered the way they had, loving a baby whose death was imminent, there would be little doubt the blood screen would be offered to parents routinely.

“You can't put a price on our agony,” said Wyatt's mom, Paula Lavigne.

Lavigne (pronounced Luh-VEEN) married Wyatt's dad, Chris Arnold, in 2008. They had met four years earlier on RAGBRAI, the annual bicycle ride across Iowa. Both in their 30s, she is an Omaha-based ESPN reporter, he is a grain merchandiser.

Before they decided to have a baby, Lavigne underwent exams and tests, including screening for cystic fibrosis. The couple wanted to be prepared.

Lavigne became pregnant in October 2009, and things seemed normal. In retrospect, she said, Wyatt didn't move or kick much, an observation that mothers of SMA children sometimes make.

The couple did what expectant parents do: put together a nursery, bought a car seat, took a child-birthing class.

Lavigne gave birth to Wyatt on July 9. The delivery went well. His color was fine, his reactions normal. He screamed and behaved like a newborn.

The first few weeks went smoothly, too. Lavigne enjoyed the special bond when nursing her blue-eyed, blond baby.

Although Wyatt seemed slow to eat and fell asleep when nursing, that problem corrected itself. He didn't move much, but this was the couple's first baby, so it didn't strike them as odd.

On Aug. 10, the 1-month-old began breathing rapidly, with a rattling sound accompanying his breaths. He was admitted to Children's Hospital & Medical Center, where doctors believed Wyatt had a viral infection.

Soon after that scare, his parents couldn't ignore that his left hand hung limply at the wrist. A pediatrician, Dr. Pat Specht, wondered if Wyatt had suffered a prenatal stroke. Tests came back negative.

But when lying on his stomach, Wyatt couldn't seem to lift his head. Still, their baby was so alert that his parents hoped he was just a bit behind physically.

Wyatt disarmed people with his smile. He liked it when his parents played patty-cake with his feet and pinched his toes, and when his mother played “Itsy Bitsy Spider” with his fingers.

He batted at book pages and loved to lie on his wooden changing table. Black-and-white drawings — a girl, a dandelion and geometric shapes — decorating the space made Wyatt smile.

In early October, Specht suggested genetic testing because of Wyatt's lack of muscle tone. The doctor described him as a “floppy baby” whose limbs and head drooped as though they couldn't resist gravity's pull.

That frightened Lavigne. But her husband reasoned that everything else had turned out OK and this would, too.

Specht tested Wyatt's blood for Prader-Willi Syndrome and SMA, among other things.

It took several days for the test results to come back. Meanwhile, Lavigne began reading about SMA.

A person with SMA doesn't produce enough protein essential for the survival of certain nerve cells in the spinal cord that send fibers to muscles throughout the body. SMA can cause weakness in the shoulders, hip, back and other areas, and can inhibit breathing, swallowing and other functions.

The symptoms — the breathing problem, the wobbly head, the limp hand — seemed to fit Wyatt.

Lavigne knew SMA was as horrible a diagnosis as her baby could get.

Her husband tried to stay upbeat. Neither he nor Lavigne knew of any family history that foreshadowed a problem.

They met with Specht on Oct. 21. The report had come back.

I'm sorry, Specht said, but it looks like Wyatt has spinal muscular atrophy.

The boy would most likely die of respiratory failure within a year.

Specht had never before diagnosed or treated an SMA child. He later said that he hoped he never had to again.

Lavigne turned to her husband and cried.

“We're gonna lose our baby,” she said.

She thought about all the memories they had planned to make. There would be no trick-or-treating, no Easter egg decorating. They would never see Wyatt walk. He wouldn't go to school or learn how to ride a bicycle.

Instead, they had to figure out how to accept that he would die in the near future.

The parents met with a team of Children's Hospital & Medical Center professionals to consider treatment and care options.

Wyatt's parents knew he wouldn't be with them long. They resolved that they wouldn't let him spend enormous amounts of time in a hospital, surrounded by strangers, medical devices and bright lights. He wouldn't die in a hospital. He would die in the place that made him smile: home.

A friend who works at the Henry Doorly Zoo gave Wyatt a special tour. They visited the ranch Arnold grew up on near Kilgore, Neb., and Wyatt looked out at the vast space of northern Nebraska and southern South Dakota.

Arnold had longed to pass on the core values of the ranch to his son. He had hoped his son would one day understand the joy of neighbors helping each other and the satisfaction of a hard day's work.

Now they just wanted Wyatt to have fun and be comfortable.

“It would be nice if Wyatt never knew that there's anything wrong with him,” Lavigne said one evening in mid-November.

That evening they took turns holding Wyatt on the living room couch. Arnold bounced him on his lap. Lavigne held him on her shoulder. She pulled out a plastic device to drum on Wyatt's back and chest to loosen fluid in his lungs.

Arnold took Wyatt upstairs and placed him on the changing table.

“Yeah, is this where you like to be?” Arnold said with delight. “This is where you like to hang out, isn't it?”

Wyatt smiled at him.

The couple marveled at Wyatt's focus on lights, people, books, images.

Arnold reasoned that because Wyatt couldn't move around, it sharpened his senses. Seeing and listening was what he could do.

Lavigne said it was impossible not to feel jealous of acquaintances raising healthy babies. But the couple also relished the support from family and others: frozen pizzas, gift certificates to restaurants and grocery stores, memory cards for cameras and video recordings, photo software for scrapbooking.

An acquaintance at Arnold's fitness club learned about Wyatt's disorder and gave the father a teddy bear.

Lavigne's ESPN colleagues visited Omaha to create a video titled “Wyatt's Top 10 Plays,” including a visit to Santa Claus at the Durham Museum.

By mid-fall, Wyatt no longer had the strength to nurse adequately, so he drank breast milk from a bottle. In mid-November, he began struggling to do that. Physicians placed a feeding tube into Wyatt's stomach on Dec. 2.

Wyatt's condition worsened. He stopped breathing the morning of Dec. 7. His cough-assist machine, which blew air into his lungs and drew air out, helped bring him back.

Two nights later, the same thing happened while relatives watched him. His parents rushed home from a Christmas gathering and found Wyatt in an ambulance outside their house. He bounced back and slept that night between them, receiving oxygen as they watched him.

The next day, Specht made a house call. He gave the boy medicine, but the situation appeared dire.

Lavigne wrote on CaringBridge, a website for people facing medical challenges: “We want to do the right thing, if only we knew what that was.”

They got a machine that measured his oxygen rate through a clip on his foot or fingers.

Last weekend, family members began to gather at the couple's midtown home.

Wyatt's breathing slowed and stopped Saturday morning. His parents called their priest, who performed the anointing of the sick, administered to those in danger of death.

Wyatt would stop breathing, then bounce back.

His parents bathed him Saturday afternoon. He splashed a bit and smiled. They put him on his beloved changing table, and he appeared happy.

But he kept crashing through the weekend, and the emotional roller coaster kept rumbling. His grandmothers took turns holding him.

His parents didn't want a ventilator placed in their boy. They wanted no invasive measures that might prolong his life a bit but make him miserable.

This wasn't the flu. There was no cure, no treatment that would make him healthy. He was born with a death sentence. There was no way around it.

His oxygen level plummeted again Sunday morning, and his parents called family members upstairs. Lavigne and Arnold hugged each other with Wyatt between them. They told him how much they loved him. It was so confusing, almost impossible to bear.

He rebounded but was lethargic, his eyes half open, exhausted. A home health nurse and one of Specht's colleagues came to the house.

Wyatt received a bit of morphine to diminish pain. The home health agency ordered another device to get more air into his lungs. The doctor thought some medicine to dry his secretions might help.

Lavigne and Arnold placed Wyatt between them in their bed Sunday evening. They propped him up on some pillows and read “The Story of Ferdinand,” about a sweet bull; “Guess How Much I Love You,” about two loving bunnies; and “Goodnight Moon,” about a rabbit's bedtime ritual.

They saw Wyatt stop breathing. The time had come. They continued reading to the end: “Goodnight stars. Goodnight air. Goodnight noises everywhere.”

They sat with Wyatt awhile, then went downstairs and told their families that Wyatt had died.

The next morning, the couple cleared out all the medical devices and all the things that reminded them of spinal muscular atrophy.

They stopped sleeping in their bed for a few days because it was too painful to go upstairs. They prepared for his funeral, which took place Friday.

One night last week, they sat at a large table covered with pictures of their baby. They talked about what he endured, what they endured.

“We don't want to forget Wyatt,” Arnold said. “We just want to forget the SMA.”

Contact the writer: 402-444-1123, rick.ruggles@owh.com

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