On the phone with Michelle Craver, I hear baby Stella in the background. “Mommy,” she says. “Mommy?”
She’d been quiet nearly an hour, with her mother at her side at Children’s Hospital and Regional Medical Center in Seattle. It had taken that long for Craver to explain what was wrong with Stella.
The Everett mother couldn’t really explain. No one has been able to explain.
Doctors in Everett and Seattle haven’t discovered why the little girl’s stomach is the size of a walnut, why she can’t keep food down, or why there are ulcers in her small intestine.
With other options exhausted, the Cravers are pinning hopes on a trip to Children’s Hospital of Philadelphia, where more expertise is available.
At 21 months, Stella is the size of a normal 9- or 10-month-old. She weighs 20 pounds, is 28 inches tall and has the bone growth of a child of 15 months. Her mother said she’s so weak she spends most of her time in a crib.
Michelle and Brent Craver, both 28, and their three children live near Frontier Village. For two weeks, the family has been scattered as Michelle stays in Seattle with Stella, an aunt watches Colton, 10, and Scout, 3, at home, and Brent goes to his job as a sheet-metal worker.
“It’s really tough on the other kids,” Craver said.
Toughest of all is the mystery, first noted after Stella’s birth at Providence Everett Pavilion for Women and Children. She was full-term, but weighed just 3 pounds 13 ounces. “It was unexplained why she was so small,” Craver said. Stella spent three weeks in the Everett hospital’s neonatal intensive care unit.
“She never really ate well,” said Craver, recalling how Stella would lose more than half of every feeding. “It wasn’t like a regular baby spitting up.” Her stomach hasn’t grown since her first few months of life. Now, she can’t keep down any solid food.
Dr. Celia Dastvan, an Everett pediatrician, sent Stella to Children’s in Seattle, where she has been treated by Dr. Karen Murray, a pediatric gastroenterologist, and has undergone many tests.
In May, a feeding tube was inserted through Stella’s nose. She is fed every two hours and has gained several pounds, yet the weakness and ulcers have worsened.
At Immaculate Conception Church in Everett, friends aren’t standing by helpless. Mothers with tots in a weekly play group at the church came up with an old-fashioned way to help.
They’ll hold an ice cream social after services this weekend at Immaculate Conception and at Our Lady of Perpetual Help churches in Everett. Donations will help pay travel and medical expenses.
The family has insurance with First Choice Health Network. Craver said a case manager is working with the Philadelphia hospital to clear the way for coverage there.
Laura Strzelec, one of the organizers of the ice cream socials, has an inkling of what the Cravers are going through.
“I have a son born four months ago, and he went through a scary time his first two weeks. I have vivid memories of those feelings,” Strzelec said. “They never asked for help, but we had to do something. Hopefully, this will make the weight of it a little lighter.”
From Stella’s hospital room in Seattle, Craver said Wednesday it’s not easy taking help from others. “It’s kind of losing control, feeling you can’t handle it on your own.”
But whatever the cost, wherever they need to go, Craver said they’ll keep seeking an answer to how to make Stella well. They’ve been told some children go undiagnosed, and that the best that can be done is to make them comfortable.
“That’s like telling me I have to watch her fade away,” she said. “It’s unacceptable. If it took going to every single hospital, somebody might know.”
Columnist Julie Muhlstein: 425-339-3460 or muhlsteinjulie@heraldnet.com.
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