Marysville family pins wishes on new heart

Julie Muhlstein Herald Columnist

When you’re 6 years old, the time between Thanksgiving and Christmas is a season of anticipation and magic.

When can we go see Santa? When will that big night ever arrive?

Jacob Peterson is like any child waiting to rip into packages under a sparkling tree. Jacob, though, knows more than a child should about waiting.

Since summer, the Marysville boy and his family have awaited another kind of magic, another kind of gift: Jacob needs a new heart.

The 6-year-old suffers from hypertrophic cardiomyopathy, a rare disease of the heart muscle. Jacob was diagnosed at age 3 by doctors at Children’s Hospital and Regional Medical Center after a routine checkup detected a heart murmur. He was put on medication, and his condition was monitored every few months at the Seattle hospital.

Jacob’s parents, Jamie and Carrie Peterson, learned to live with the limits their son’s condition demands. He isn’t to roughhouse or play sports, tough orders for a little boy. That Jacob has a rambunctious younger brother, 5-year-old Jeremy, makes curtailing activity even tougher.

"It’s really hard. Jeremy played soccer, and Jacob had to watch," Jamie Peterson said. "We didn’t want to hold Jeremy back."

In July, the family got terrible news. A heart catheterization test showed Jacob’s situation had gone from difficult to dire. He now needs oxygen constantly, and a heart transplant is his best hope of survival.

Jacob celebrated his sixth birthday July 12, two days before the test at Children’s. A birthday snapshot shows a smiling Jacob with a new bike he now can’t ride.

"We have to limit all his activities; he can’t even run down the hall," Carrie Peterson said.

Jacob, a first-grader at Lakewood Elementary School, takes his oxygen tank with him on a portable cart. He is assisted by educational aide Adam McCurdy, who is also his uncle.

Dr. Michael Portman, a pediatric cardiologist at Children’s, explained that Jacob’s disease "makes the heart muscle stiff, causing back pressure on the arteries that supply the lungs."

"That pressure damages the lungs," the doctor said.

Aside from several medications and oxygen, there is no treatment short of a new heart.

"If there was anything else to be done, we wouldn’t be doing a transplant," Portman said.

With the boy on a regional list for a heart, the family can do little but play a waiting game.

"Sometimes a heart could pop up a couple of days after someone is listed; sometimes they have to wait a couple of years," Portman said.

The waiting is "a huge stresser," said Jamie Peterson, a director/producer for Cornerstone Communications in Seattle. His wife works at a Smokey Point dental office. He carries a cell phone that’s always on. She is never without her pager as they await the call that could mean a heart for Jacob.

The family has health insurance, "but it doesn’t cover everything, and house payments don’t make themselves," Jamie Peterson said. Medical costs in the first year of a transplant run $250,000, he said, and can average $60,000 to $80,000 per year after that to maintain a patient on anti-rejection drugs.

Financial concerns can’t compare to the gravity of what the Petersons face.

"It’s been pretty overwhelming. Philosophically, it’s a weird thing, waiting for a donor," Jamie Peterson said.

At home with their boys, the young parents keep their fears to themselves.

"I don’t even pretend to know what they could be going through," said Jacob’s grandfather, Tom McCurdy.

On this day of thanks, they know what an incomparable gift it would be to have Jacob’s life saved through someone else’s loss.

They are thankful, too, for a donation earlier this year from the Marysville Fire Department and for their supportive families and co-workers. And they pray the waiting will soon be over.

Quietly, the boy’s father said, "We haven’t talked to him about the fact that he could die. It’s all a part of the circle of life, but for a 6-year-old, it’s not fair. Every day he asks, ‘When am I going to get my new heart?’ "

A fund has been set up to help pay Jacob’s medical expenses. Donations may be made to the Jacob Peterson Heart Care Fund at any Washington Mutual Bank.