Students Rally Round Classmate

School Encourages Medical Professionals To Discuss Girl's Liver Transplant With Kids

By Katherine Lowrie

News Staff Reporter

Saturday, January 31, 2004

A large pump jar of Purell hand cleaner is placed near the door of a second-grade classroom at St. Francis of Assisi elementary school. Students use the hand cleaner before they enter. After they leave each day, every desk in the room is disinfected.

The germ-fighting efforts were put in place to help classmate Abby Uranga who returned to school this month after receiving a new liver in August.

Abby had been away from her friends and classmates since June. The school and community rallied around her during that time, and her family said the support eased the stress of the days leading to and after the transplant.

The school found tutors for Abby and encouraged health professionals to meet with students and staff to discuss Abby's disease, her transplant and her post-operation needs. Friends brought meals to Abby and her family and helped with their shopping. Classmates learned that Abby really is, mostly, like other kids. The whole school offered prayers and well wishes.

"Abby's road was a lot easier because everyone was educated along the way," said Abby's father, John Uranga. "We wanted the school to be involved."

St. Francis school staff said they too benefited from the experience.

"Abby has been an inspiration to me from the moment I met her," said Carlyn Boivin, Abby's first-grade teacher. "She is a very determined little girl with a wonderful spirit."

Abby was born with the liver disease Alpha-1 antitrypsin deficiency, an inherited disorder that causes low levels or no protein to be made in the liver. Abby was not expected to survive her first year.

Her energy level was not always what a normal child would have, and in first grade she became weaker. It became difficult for her to concentrate or to play with classmates. Doctors determined she had an enlarged spleen and her liver was losing its ability to properly cleanse her blood.

Believing that children tend to fear what they don't understand, the Urangas chose from the beginning to be straightforward with their daughter, as well as her peers, their parents and school staff.

The Urangas also decided that if one good thing could come of Abby's plight, it would be to demystify and spread awareness about organ donation.

In October of Abby's first-grade year, she and her mother Lorie Uranga provided a show-and-tell presentation for Abby's classmates to erase their fears and let them know more about Abby's malfunctioning liver. Upon learning of Abby's condition, some students feared their livers would "fall out" or "get dirty," said Lorie Uranga. Mother and daughter showed children a sketch of a healthy liver - the kind they had, and that Abby has now.

Principal Linda Miller said school staff exchanged communication frequently.

"If someone was sick in the classroom, we called to alert Abby's parents," Miller said.

In December, the school sent a letter to parents informing them of Abby's liver condition and what the year might hold.

In January 2003, Abby was placed on a waiting list for a new liver. She waited eight months.

Abby worked with University of Michigan clinical care coordinator Vicki Shieck and child psychiatrist Lisa Opipari to help her prepare for the emotional aspects of the transplant.

The night before the operation, Abby's mother took her to an Aaron Carter concert.

"That says something about Abby's parents," said Kristen Dolsen, one of Abby's home tutors. "They want to protect her but also allow her to have joy in her life."

When Abby returned to school, she told her classmates that news of the available organ and pending transplant was "exciting and scary." She also assured them that the surgery didn't hurt.

"They put me to sleep before they did anything," she said.

To ease Abby's return, the school invited Amy Olszewski, the youth coordinator for Gift of Life, a Michigan Organ and Tissue Donation Program, to talk with students and their parents about Abby's transplant and how they could help Abby stay healthy.

"Doctors don't like patients going 'ouch' during surgery," Olszewski joked with the children. "You guysare freaked out by (the surgery) but I bet Abby was 10 times more freaked out because it happened to her."

Olszewski also told the second-graders why they needed to understand Abby's condition.

"Abby takes medicine that tells her body not to fight that new liver so it's very important that if you are not feeling well, you tell your mom and dad," Olszewski said. "It's not good for Abby or anyone in your class if you come to school really sick. And remember to cover your mouth when you sneeze, wash your hands after going to the bathroom."

To help students understand the transplant, Olszewski likened Abby's liver trouble to a car in need of a new engine.

"Does your car look different when it comes back from the shop? No, not really. The car comes back with a new part and works just fine. Abby needed a new part. Her blood was a little dirty like the filter of a car and it was making her really sick."

Olszewski also drew a distinction between communicable diseases such as the flu and conditions children are born with so that Abby's classmates, and their parents, would be assured that playing with Abby is safe.

Lorie Uranga said the efforts made a difference.

"I can't tell you how many times I've walked away from her school thankful for the teachers," she said. "The kids accept Abby for who she is."

When Abby's energy began to slip, it was school officials who encouraged a half-day program and tutoring. They brought in retired St. Francis teacher Mary Jean Steeby, who donated her tutoring time to the family. Assistant kindergarten teacher Sandy Stefl used her lunch break to tutor Abby five days a week and some Saturday mornings. Other teachers also helped.

"I bridged the gap," said Dolsen, a retired Ann Arbor teacher. "She'd missed a lot of school and we wanted her to be at grade level. I met her teacher and studied the classroom, then went home and tried to make my kitchen look like it so that Abby was a part of it."

If Abby's first day back was any indication, the effort worked.

"She came home after the first day back and was grinning from ear to ear," Lorie Uranga said of her daughter.

Lorie Uranga said she and her family are grateful for the work of the U-M Pediatric Transplant Team and to the donor family for the ultimate gift they gave their daughter when their own child died.

"We knew it was a 6- or 7-year-old child. It was their gift," Lorie Uranga said. "Here we are all celebrating and there was another family in such pain.

"Hopefully, some day we will meet them to thank them," she said.

Now, the Urangas want to give, by helping other families who are dealing with organ transplants. Last year, Lorie Uranga joined U-M nurses, other transplant families, pharmaceutical companies and the University of Michigan Transplant Center to create Camp Michitanki, a summer camp in Oscoda. The goal is to provide a camping experience for children ages 8 to 16 who have had an organ transplant. Abby will attend the camp this August, joining other transplant recipients who are learning to adapt to their medication schedules and care needs.

"This camp was the peace that came out of Abby's ordeal," Lorie Uranga said.

According to Gift of Life, 2,546 Michigan patients were awaiting a transplant as of Jan. 1. The United Network for Organ Sharing reports that nationwide more than 2,200 children under the age of 18 are waiting for an organ transplant.

Olszewski said that's why organ donation education is necessary. Although it is an emotional decision, she said, donation is a way for life to come from death.

"We would not have an organ-transplant waiting list if all families we approached said yes (to organ donation)," she said.

While Abby waited, she spent a lot of time battling fatigue. Now, her mother said, Abby wants to make up for lost time.

"She was tired for a couple days after the surgery but then we got a whole new Abby," Lorie Uranga said. "She was energized. She gets to do everything she couldn't do before. She wants to play baseball. It's a whole new beginning."

Abby wants to take gymnastics because she had to give it up before, and like many girls her age, she wants to meet actress and recording artist Hilary Duff, sing on American Idol and go to Hollywood.

The Urangas said having a child go through such a serious health challenge changes one's perspective and brings about growth.

John Uranga admitted he had difficulty accepting help from others in the beginning because he wanted privacy and normalcy for his family.

"It was hard for me at first, but then I saw the other side of it," he said. "They needed to give."

Katherine Lowrie can be reached at (734) 482-2263.

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Copyright © 2004 Ann Arbor News.

This article posted February 18, 2004.