The Gift of Life 3

Local boy thrives after life-saving liver transplant

Six-year-old Tyler Bonelli-Schultz knows how to make his parents laugh. And go in for a layup. And tattle on his big brother.

He arrived as many children do—born into a loving family who looked forward to his birth with joyful anticipation. But looking into his icy-blue newborn eyes, no one could have guessed how hard he would have to fight for a shot at life.

A touch of jaundice kept baby Tyler in the hospital for a couple of extra days, but he was an otherwise healthy newborn. He was sent home to Hawthorn Woods, joining his brother Zachary, who was two, under the loving care of his parents, Jennifer Schultz & Erika Bonelli.

Because of his jaundice at birth, baby Tyler was monitored with a blood draw a few days after his birth. Just hours after the test, a dreadful call came from the doctor. Tyler’s liver was not working right.

“They told us to pack a bag and head directly to the ER” at Children’s Memorial Hospital (now known as Ann and Robert H. Lurie Children’s Hospital), Erika said. “And that’s where we spent the next 8 or 9 straight hours.” Newborn Tyler had more blood work, ultrasounds, and other scans to eliminate cancer, tumors, and other possible diseases. Days later, the worried parents consulted a specialist in pediatric liver disorders. “He kissed our baby, handed him back to us, and said ‘Don’t worry. We think he’s going to grow out of this,'” Jennifer said. Tyler’s parents celebrated. Even though there was more monitoring ahead, they believed he was on the upswing.

Their confidence quickly waned over the next few weeks at home. Tyler constantly ate yet was fussy all the time. He cried for hours and would scream whenever they strapped him into his car seat. His liver function tests were not getting better, and they started to feel a firm spot in his belly. Multiple biopsies and tests later, the doctors had ruled out many liver diseases yet could not find solid answers about Tyler’s condition.

“We felt confident in the care Tyler was receiving—we knew we had the best doctors, and that they were sharing Tyler’s case with other colleagues,” Jennifer said. Yet no one had the answers they so desperately sought.

“Every week that passed, things seemed bleaker and bleaker. He was more distended, more miserable,” said Erika. Eventually, the doctors made it clear that Tyler’s liver was not “kicking in” as they hoped it might. On August 17, 2010,  the almost-six-month-old was evaluated for a transplant.

“I’ll never forget that day,” Jennifer said. “I could see he wasn’t ‘there with us’ as they were drawing his blood,” she said. “He passed out; they called a Code Blue, and about 15 doctors appeared. Sirens were going off, and they loaded the two of us onto a gurney, and we were flying through the halls of the hospital,” she said. “It was crazy.”

At that point, Tyler’s iron levels were deadly low. His liver was not processing anything, nor was it draining toxins from his blood. Because of his worsening condition, Tyler shot up to #2 on the Midwest region’s transplant waiting list.

“Many people don’t know that the liver regenerates and that a living donor can give part of their liver for a patient who needs one. It’s called a split liver donation,” Jennifer said. “I was a match for his blood type, and I was ready to go,” she said. In the meantime, less than two weeks after he was evaluated, a donor liver that was a match for Tyler became available.

Tyler received a part of that adult donor’s liver in a ten-hour transplant surgery on August 30, 2010, and made a remarkable recovery. “Within days his color completely changed and we watched him get better day by day,” Jennifer said. A complication arose a week after his transplant surgery in the form of a clogged bile duct, which the surgeons were able to repair. Tyler recovered steadily after that and was able to come home in October.

In the coming weeks and months, the Bonelli-Schultz family started to think more about the amazing gift Tyler’s organ donor had given them. Privacy laws protect families in organ donation situations, so they began working with the transplant coordinator to reach out to the donor’s bereaved family.

“We wanted to respect their grieving process, and perhaps help a little by sharing our gratitude and the joy that Tyler has brought to our family,” Jennifer said. Two months later, they received an envelope in their mailbox—a letter from the donor’s family, acknowledging their letter. “We cried a lot that day,” she said. “That donor is our hero.”

These days Tyler is living life like any six-year-old—playing sports, learning to read, jumping in mud puddles. His doctor’s keep a close watch on his health, and he will always take anti-rejection drugs. But he is thriving, learning and growing.

Tyler is free to live, thanks to the generous gift of a stranger.

For more information about organ donation, visit GiftOfHope.org.