Preschooler beats the odds of fatal liver disease

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Jack with his new Flynn Ryder plastic sword

Updated: March 24, 2012 8:33AM

To the outside eye, Jack Benjamin is a typical 3½-year-old towhead.

His pants display traces of preschool paint and a peanut-butter-and-jelly sandwich.

A display of knights and a dragon at Evanston Public Library fascinates him.

Although Jack now enjoys a normal childhood, when he was a baby he and his family experienced the unthinkable.

In 2008, before reaching 6 months of age, Jack was diagnosed with a fatal liver condition and underwent a partial organ transplant at Children’s Memorial Hospital in Chicago.

This year the young boy is one of the hospital’s ambassadors for IHOP restaurants, which celebrates National Pancake Day Feb. 28 in an effort to raise awareness of and funds for hospitals that serve children who face serious medical issues.

“I owe Children’s Memorial everything,” said Jack’s mother, Noelle Krimm. Without Children’s care, she added, “He would’ve died before he was 6 months old.”

Jack is the second child of Krimm and husband Sean Benjamin, of Evanston. Their daughter, Lily, was 3 years old when Jack was born June 26, 2008.

As an infant, Krimm said, Jack appeared healthy and strong despite newborn jaundice. He gained weight quickly. Then, at the conclusion of Jack’s routine 2-month, a nurse asked Krimm if there was anything else she wanted to discuss.

“It was almost obligatory,” Krimm recalled. “I thought if I don’t have questions or concerns I’m not paying attention enough.”

Krimm told the nurse that Jack’s skin still appeared yellow. Just to be safe, the nurse took a skin test and sent Jack to Children’s Memorial for blood work.

Four days later the family of four visited a zoo on “one of those perfect days,” Krimm said.

Lily, in her fairy costume, went on a swan boat ride with Benjamin while Jack quietly snoozed in his stroller.

Krimm became alarmed when she saw four missed calls on her phone. A doctor she had not yet met left a message stating Jack’s blood test results weren’t good.

When Krimm and Jack returned to hospital they faced a new reality.

“His disease is so rare that a pediatrician said, at best, he had a neonatal hepatitis,” Krimm said. “The worst-case scenario was biliary atresia.”

According to the U.S. Department of Health and Human Services, biliary atresia occurs in about one in 10,000 babies. Its cause is unknown and treatments are typically only partially successful.

To buy Jack more time, doctors performed a routine surgery to attach a part of his small intestine to the liver to allow for bile drainage, as bile had been pushed up into his bloodstream and was destroying his liver cells.

The surgery typically has only a 33 percent success rate, Krimm said, and most children end up getting transplants. Jack was one of those babies.

In November the family put Jack on the transplant list. His health had steadily deteriorated. His skin had turned more yellow and his stomach swelled, a sign that his blood cells had separated and his body was filling with liquid.

“Transplant surgery was the only option he had,” Krimm said. “The alternative [was] certain death, so we had to give it a shot.”

Benjamin was screened as an organ donor and tests determined he was a match.

Jack was admitted to Children’s Thanksgiving week of 2008 to prepare for the surgery just as he hit a downward spiral. His kidneys stopped functioning and his lungs started to fill with fluid.

“It was terrifying,” Krimm said. “He was really close” to death.

Staff at Children’s Memorial provided around-the-clock treatment and care to get Jack stabilized for surgery.

On Dec. 4, 2008, Benjamin underwent surgery at Northwestern Memorial Hospital to have a fifth of his liver removed. The organ was transported to Children’s Memorial, where Jack received the partial liver during a 10-hour-long surgery.

Later the family learned that the life-saving transplant nearly didn’t happen. Benjamin’s veins were connected to his liver in an abnormal way. While Benjamin lay on the operating table, surgeons at Northwestern and Children’s Memorial had a discussion about how to proceed.

“I’m pretty sure the decision came down to, if we don’t try this, this kid doesn’t have a chance,” Krimm said. “There was no time to go back and test another donor.”

So the doctors went for it.

Children’s Memorial Hospital’s cutting-edge pediatric liver transplant program has one of the largest and most experienced surgical teams in the world.

Jack’s surgeon, Dr. Riccardo Superina, is “some sort of miracle man,” Krimm said.

Now, three years after the transplant, Jack has all the energy a preschooler could possibly possess, and he’s rather empathetic and observant for a child. He often points at sunsets and comments on “how pretty” they are, she said.

The Benjamin-Krimm family has partnered with the Children’s Organ Transplant Association to raise funds to help pay for Jack’s transplant-related medical expenses, which are still ongoing. Tax-deductible donations can be made on the family’s page at cota.org.

Participate in National Pancake Day by visiting one these nearby IHOP restaurants:

100 Asbury Ave., Evanston, 847-328-1450; 9500 Skokie Blvd., Skokie, 847-675-5100

or 2131 Willow Road,
Glenview, 847-657-9570