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Carterville child needs new liver within next few months

By Blackwell Thomas, The Southern

Saturday, July 19, 2008 10:24 PM CDT

Ten-month-old Emery Patterson is like a lot of babies her age. She's got huge eyes that project her mood like spotlights. She's got round cheeks, begging to be pinched and a prominent "Buddha belly."

But, unlike most babies, Emery has a small tube that runs up into her nose and down into that tummy. It is through this tube that Emery's mom Crissy feeds her most of her meals.

A rare disease has left some of Emery's other organs swollen, which gives her stomach little room to expand as it would after a regular feeding.

And, instead of crawling around outside and visiting friends for play dates, Crissy and Emery spend nearly every moment in their Carterville home, fearful of germs that could set off a sickness that her fragile body couldn't recover from.

The disease is biliary atresia and, according to the Children's Liver Association for Support Services, it affects about one in 16,000 babies annually.

The disease hits within the first couple weeks after birth and acts by inflaming and blocking ducts needed to drain bile from the liver. This causes the bile to back up, and destroy the organ from within.

And, while the liver is resilient and capable of re-generating, one of the mysteries of the disease is that it takes away this ability.

There is no known cause to biliary atresia, it's not believed to be genetic or acquired in the womb; so far, doctors and researchers have learned only that it is likely acquired shortly after birth.

For Crissy and her husband Will, an employee at Southern Illinois University Carbondale, the outlook is as clear as it is cold - if Emery doesn't get a liver transplant in the next three months she could die.

Penny Scholl, a Liver transplant coordinator St. Louis Children's Hospital, is handling Emery's donor case. Scholl said Emery's prospects for getting a liver are as good there as anywhere in the country.

"We normally have a short wait time; our kids average is three moths," she said. "If you look at other centers it's eight, nine months or more; some kids wait more than a year. Emery needs a transplant within the next couple months."

While it is possible to take a portion of an adult liver and transplant it, Scholl said the odds of success are greater with a infant donor.

Crissy says Emery is one of five babies in a six-state region waiting for a donated liver, but she acknowledges there is no guarantee one will be found.

And while Emery is a sick baby don't bother telling her, she's too busy smiling.

On a recent Tuesday morning, as Emery sat tapping a plastic xylophone sitting at her feet, Crissy talked about her only child and the illness threatening her life.

"You never get to relax; your baby is deteriorating right before your eyes and there is nothing you can do about that," she said. "Don't get me wrong, she looks great but it's not often a baby in her condition looks this good."

With Emery, appearances can be deceiving Crissy said.

"The doctors said that she is uncomfortable all the time. But she's happy. That's also kind of unusual for a baby in her condition."

A plastic tub sits on the Patterson's counter filled with the prescriptions Emery was, or is currently taking. Crissy, who is trained as a registered nurse, says Emery is currently on six medications that have to be administered in exact combinations at precise times.

"It's like, 'this one can be taken with that, but not that one and two hours after that one," said Crissy.

So far, Emery has spent five weeks of her life in hospital, most recently she had an eight-day stay at St. Louis Children's Hospital that ended earlier this month.

Crissy said the time inside and the physical toll of the disease are slowing Emery's growth and development.

"At this stage in a child's life you celebrate milestones, first step and those kinds of things," she said. "We are getting milestones of getting sicker and sicker."

When the immediate worry of a hospital visit has subsided, the Patterson's deal with the lingering fear of finding a donor, a process the couple says is one of paradoxes.

In hoping for a transplant Crissy acknowledged that the donated organ will be the product of someone else's tragedy. And, while they want their daughter to be healthy, her chances of receiving a transplant increase as she gets sicker.

And, at the end, they hope for an invasive surgery, likely to include a painful recovery, so their daughter can finally live pain-free.

"The thing they (donor officials) have told us is that tragedies are going to happen with or without Emery being sick," Crissy said. "We just have to wait.

"The last time I looked at the list there were 9,000 people (adults included) in the U.S. waiting for a liver. But it all comes down to people being willing to donate."

The Patterson's have their suitcases packed, ready to grab Emery and bolt out the door to St. Louis when they get the call that a donor has been found.

"But until then," Crissy said, "we wait."

blackwell.thomas@thesouthern.com

351-5823