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Rare TP Offers Hope
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Rare TP Offers Hope

Kimberly Lindsey marvels that her 3-year-old son Merrick doesn't need to take 10 different medicines anymore. He can safely frolic on the playground among the germs that lurk there.

Two years ago, Merrick's liver suddenly shut down. Standard treatment would have meant a full liver transplant and a lifetime on drugs to keep his body from rejecting the new organ. The medication suppressing his immune system would have raised his risk for infection and possibly damaged his kidneys.

Instead, Merrick underwent a rare and once virtually abandoned operation in which a partial donor liver was attached temporarily to his failing liver.

His own liver regenerated, and the transplanted liver is shrinking and may eventually waste away. He has been taken off the anti-rejection medication.

Seven children have had the operation at the University of Miami/Jackson Memorial Hospital — the only U.S. facility believed to be regularly performing the surgery. Four of them are now off anti-rejection drugs and a fifth is close.

The procedure was first tried in the mid-1990s, but U.S. doctors thought the chance of death or complications was too high. One patient who had the surgery at the Miami hospital in 1998 remained hospitalized for three months because of complications. Ultimately, his liver recovered and he too was taken off the anti-rejection drugs.

Surgeons in England, France and Japan continued to do the procedure, and in several cases had favorable results. Jackson's Dr. Tomoaki Kato was encouraged by reports out of Europe. Since 2005, he has performed six partial transplants; all have survived.

It's "time to revisit the procedure," said Kato, the hospital's director of pediatric liver and gastrointestinal transplant program. "There's a great benefit for the children and the technology has developed so much."

Still, some surgeons say they will stick with the traditional transplant until they see more proof that the partial transplant is safe. The operation can take more than 10 hours, twice as long as the standard transplant surgery, and is more complicated, increasing risks to the patient. After surgery, a patient must have multiple biopsies to see if his own liver is regenerating.

Dr. Charles Miller, director of liver transplantation at the Cleveland Clinic, said that what concerns surgeons "is that you're taking a very sick patient and, in most cases, you would rather do the simplest operation."

The liver, which cleans toxins from the blood, is unique among the body's organs in its ability to regenerate, making the procedure possible. In some cases, the liver can recover from acute, or sudden, failure on its own. But if the organ doesn't recover fast enough, patients can suffer brain damage from the toxins if they don't get a transplant.

For Lindsey, choosing the potentially riskier partial transplant for Merrick was easy. Either road was going to be difficult, she said, and at least with the partial transplant, the little boy had a chance to regain the use of his own liver.

Little more than a year after the operation, Merrick's liver had regenerated enough that Kato took him off his anti-rejection drugs. His transplanted liver is shrinking and may eventually disappear. (In some patients, it is surgically removed.)

"I can sit here and say my son is off. He's off everything," Lindsey said. "What they did was a true miracle."

Because the operation is so rare, organizations like the United Network for Organ Sharing and the American Liver Foundation do not track the number of partial transplants performed or have specific guidelines for it.

Kato has created his own rough guidelines. He says children fare better with the operation because their livers have better rejuvenating abilities than adults, and he's only used it for cases of acute liver failure. Chronic liver problems, like hepatitis or cancer, would not be cured with this procedure.

Using this criteria, the number of people who could benefit from this procedure is limited. Fewer than 400 people got transplants for acute liver failure in 2006, about a fifth of them children, according to data from the Organ Procurement and Transplantation Network.

The procedure is covered by insurance companies. Kato said the cost is roughly the same as traditional transplants. He also noted the long-term health care savings: After patients get off anti-rejection drugs, they save thousands of dollars a year.

And while the Miami patients received livers from deceased donors, the surgery could be performed using a live donor, such as a parent if tests showed compatibility.

The University of Chicago's Dr. Donald Jensen said that although the procedure is promising, if his own child were involved, he would still choose a standard liver transplant.

Jensen, director of the university's Center for Liver Disease, said some of the partial transplant's safety and other issues, still need to be worked out.

Some of Kato's patients have needed a second surgery to remove the transplanted partial liver because it became inflamed after anti-rejection drugs were halted. And a few have yet to get off those drugs.

Yailin Nunez's 2-year-old son Jonathan was the sixth patient to have the partial liver transplant at Miami. Of all the patients, his liver has shown the least recovery more than 20 months later, even compared to a boy who had the operation this summer.

"I still have faith my son's liver's going to regenerate.... It's just taking a little longer," Nunez said through tears. "And if it doesn't, it's OK.... We're given the chance and I've met other moms who weren't given the chance."

Brenner Logan's parents are praying the toss-up goes in their favor. In August, the 2-year-old became the most recent to have the surgery.

His liver is already showing signs of recovery.

Brenner's mother, Kristen Logan, is cautiously optimistic. After her son's surgery, she met one of the patients whose transplant was a success.

"You think, 'Wow. This could be my son,'" Logan said. "You begin to have so much more hope for the future."
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5 Comments Post a Comment
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Avatar_m_tn
I love reading that kind of story helping children! Thanks, makes me happy! Whenever I've gone to see people in the hospital I really feel bad when I see kids in there! The only money I donate is to St Judes Childrens Research!
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Avatar_f_tn
That's great. Its really amazing. I'm glad you posted this.
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315996_tn?1321809719


Ditto

(for a second I thought the post was about rare toilet paper (TP). The illogical jumper that I am I immediatly started thinking: "yeah, softer, bigger rolls, no cardboard center that you have to try and throw away)

Anyway, anything good for kids is good for the world,
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325425_tn?1197683999
Thank you for sharing.  What an awesome story.
In Jesus, the Reason for the Season
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338734_tn?1377163768
That's great to hear. I know that this has been done successfully for children in the past. It is great to hear a success story firsthand.

Best wishes
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