Column: Organ donors needed for Ellie and for others

Published June 28 2009
Column: Organ donors needed for Ellie and for others
I last wrote about Ellie Olson in December 2007, her Christmas wish and her family’s improbable story both striking me that dreams can come true, that God is watching out for us. Ellie’s latest medical bout offers a different sort of reminder.

By: Chuck Frederick, Duluth News Tribune

The call came while she was at work. Her daughter, Ellie, 11, had a stomachache and a fever of 100.5. Nothing too serious — for the “normal child,” Toni Snickers said last week.

But Ellie was born with kidney disease. Doctors had to remove one kidney when she was little and then half of her other one when fevers and other problems didn’t abate. Ellie is on a waiting list for a kidney transplant. For 12 hours every night — every single night, from

6 p.m. to 6 a.m., even as her friends play outside her Duluth Heights home during the never-ending evenings of summer — Ellie endures dialysis, stuck in her room.

“I rushed home to find her in her bed with fever, tears rolling down her eyes from the pain,” said Snickers, a surgical technologist at Miller-Dwan Medical Center. “My worst fear of her current situation was staring me in the face. I took a sample bag of fluid from her belly [via a catheter used for the dialysis]. It was not clear, as it should be. Cloudy fluid, fever, belly pain all [were] signs of infection. Crap.

“It came on so fast. In the morning, her fluids were clear. No temp. No pain.”

On Thursday, Ellie was admitted to St. Mary’s Medical Center. She’s on antibiotics administered through her dialysis bags. She’s expected to remain in the hospital for two weeks. That meant no bake sale, raffle or silent auction Friday at Miller-Dwan, an event held to raise money for her medical expenses. And Ellie missed a rigatoni benefit dinner Saturday night at Mr. D’s.

“She is stuck in her hospital bed,” Snickers said.

I last wrote about Ellie in December 2007, her Christmas wish and her family’s improbable story both striking me that dreams can come true, that God is watching out for us. Ellie’s latest medical bout offers a different sort of reminder.

Ellie’s kidney problems were partly hereditary, but it didn’t help that her biological mother took drugs during pregnancy. At age 3, her mother died of uterine cancer. A month after that, Ellie was placed into a scalding bath without the water first being checked. Her third-degree burns required skin grafts to repair.

Three years later, Ellie’s father, Lowell Olson, who works for a Duluth bearing manufacturer, reconnected with a woman he hadn’t seen for 20 years, not since they were classmates at AlBrook High School. On their first date, they realized they shared a bond beyond the classroom: Ellie. Snickers had helped care for her in the burn unit at Miller-Dwan. Ellie was one of those patients you never forget: her little, elflike face and her eyes filled with fear and uncertainty, as Snickers once described her first meeting.

After marrying Ellie’s father, Snickers noticed the girl listed to one side when she walked. A body scan and MRI revealed her hips weren’t developing normally. Also, her bladder was enlarged and her urethra was dilated. Surgeons at St. Mary’s realigned Ellie’s hip socket by removing a piece of her femur and installing three screws and a plate.

On one of the more painful days of her childhood, Ellie, then 8, visited with her family the massive holiday lighting display at the home of Marcia Hales on Park Point. Limping with every step, Ellie made her way through a tunnel of lights. She had spotted a little plastic penguin there earlier and noticed a sign leaning against him. “Legend of the penguin,” it read. “If you make a wish while you pat my head, your wish will come true.” Ellie extended her hand. She whispered quietly: “I wish to not have pain anymore.” That night, a headache disappeared and her hips stopped throbbing, she reported to her mother.

Ellie is among an estimated 70,000 people in the U.S. awaiting a life-saving kidney. That means her story is one of tens of thousands of reminders of the critical need to register as an organ donor — and then to inform loved ones of the decision so there are no doubts and no second-

guessing.

Ellie’s story also makes clear that the more than 4,000 living donor transplants performed by University of Minnesota physicians — as triumphant as every one of them has been — haven’t been enough.

“Our donors have a lot of reasons for giving, all amazing,” Cathy Garvey, clinical coordinator for the transplant center at the University of Minnesota Amplatz Children’s Hospital in Minneapolis, where Ellie is one of about six children registered for a kidney transplant, said in a statement for the News Tribune. “Sometimes they have a personal relationship with the recipient, but we also have donors who have never met their recipient and just want to do something to help another person.”

Every time someone decides to become an organ donor, as many as eight lives can be saved, according to LifeCenter, an organ donor network based in Cincinnati.

Ellie and her family can be comforted to know that since 1963, more than

1,000 children have received a kidney transplant at the University of Minnesota Amplatz Children’s Hospital. That’s the single-largest number of pediatric kidney transplants in the world. In addition, the hospital has the largest living donor kidney program in the country. And its pediatric kidney transplant program has the highest reported infant kidney transplant success rate in the world.

But an infection has to be dealt with first. That means more dialysis, more long nights and more anxious moments.

“I really don’t like dialysis,” Ellie confided last week before she became ill. “When it’s done, I won’t have to go to bed at six o’clock and I won’t have to get up at six-thirty anymore.”

Ellie doesn’t complain much. Abba’s “Super Trouper” isn’t only her favorite song, it’s who she is, her mother says.

“And with the fundraisers and everything, it’s not just about Ellie,” Snickers said. “It’s about how important organs are and how important it is to check that box on your driver’s license to become a donor. There are so many kids and adults who die every year waiting for an organ. And then there are those who throw their lives away. They really make me mad.”

Fighting mad for just one more kidney, one more successful transplant, and one more person to make that decision to become an organ donor.

Chuck Frederick is the News Tribune’s editorial page editor. He can be reached at (218) 723-5316 or cfrederick@ duluthnews.com.

http://www.duluthnewstribune.com/event/article/id/124000/