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Intestinal transplants no longer as risky, rare

SHARE Intestinal transplants no longer as risky, rare

When your child is dying, no distance is too far, no sacrifice too great.

So it was that the Canal clan — father, mother, son, daughter — moved from one coast to the other in 1994 to save the life of Daniel, 13, whose intestines had been destroyed by disease that imperiled three other organs as well.

"There was no place here on the West Coast doing anything in intestinal transplants," said Daniel's mother, Lori Canal. "We had no choice. We had to move or Danny would die."

Back then, intestinal transplants were rare, risky, and performed by just a few surgeons. More often than not, doctors treating patients with failing bowels opted to keep them alive on a muddy mix of nutrients that eventually destroyed their liver. That, doctors figured, was better than surgery that ended life more often than it prolonged it.

Now, although intestinal transplants are still among the most difficult and daring surgeries known to any operating room, the equation is shifting profoundly.

UMass Memorial Medical Center, among a handful of other hospitals across the country, has quietly made plans to begin performing intestinal transplants, which often require the simultaneous replacement of a liver and other organs.

The operation — considered experimental only two years ago — is so intricate and the needs of patients so demanding that just three hospitals across the nation performed the vast majority of last year's 170 transplants during marathon procedures that can stretch 20 hours.

But with advances in drugs and a better understanding of the inner workings of the intestines, surgeons now have a hope of saving children and adults who, because of congenital defects or surgery, are left with no bowel or a faulty one.

At UMass Memorial, surgeons expect to complete several dozen transplants a year like Daniel's. And a top surgeon at Massachusetts General Hospital said doctors there are actively weighing resuming intestinal transplants, which they had done on three patients in the early 1990s before concluding then that the operation offered too little prospect for success.

"As more and more of the bugs are worked out of how things should be done, more and more people are willing to take it on," said Dr. Alan Langnas, chief of transplant medicine at Nebraska Medical Center in Omaha, which dominates the field along with the University of Pittsburgh Medical Center and the University of Miami-Jackson Memorial Hospital. "For many surgeons, intestinal transplants represent the new mountain to climb so that organ replacement therapy can help more people."

Intestinal transplants are especially complex both because patients are so sick and because of the nature of the bowel itself. Unlike organs such as the liver, which arrive in relatively pristine condition from the donor, the intestines can be a factory of potential disease.

"The intestine is not a sterile environment," said Dr. Luca Cicalese, director of liver and intestine transplantation at UMass Memorial. "It is loaded with bacteria, and some of these bacteria can leak out."

Plus, for reasons not well understood, the recipient's immune system is particularly primed to recognize the cells of a donated intestine as foreign, exacerbating chances the organ will be rejected. That, in turn, compels surgeons to increase the flow of medication designed to prevent rejection — medicine that suppresses the patient's ability to fend off infection.

Those would be substantial hurdles for any patient to overcome, let alone for patients who arrive profoundly ill, having endured months or even years tethered to intravenous lines that feed them a food substitute.

"The patients are the most challenging patients with chronic disease," said Dr. Kareem Abu-Elmagd, director of the transplant center at the University of Pittsburgh.

After an initial burst of interest in intestinal transplants in the early 1990s, many hospitals shuttered their programs, discouraged as barely one-third of patients survived a year.

"It became clear it wasn't ready for widespread application," said Dr. A. Benedict Cosimi, chief of Mass. General's transplant unit. "Sort of a self-imposed moratorium went into effect."

Increasingly, though, patients are being referred for transplants earlier, before other organs have failed as well. That, along with advances in anti-rejection medications, has dramatically improved patients' prospects for survival, with 77 percent now living at least a year after transplantation, according to data from the United Network for Organ Sharing.

"The patient's likelihood of surviving a prolonged period of time is better with transplantation than it is with indefinite intravenous nutrition," said Dr. Dana K. Andersen, chairman of surgery at UMass Memorial. "That's the line we've crossed."

Improved survival rates, in turn, have stoked both demand for the surgery as well as interest by medical centers in performing it. But specialists cautioned against too many hospitals embarking on intestinal transplant programs, concerned that surgeons would never acquire the expertise needed to do it right.

At UMass Memorial, because operating rooms had already been designed for other transplants, the costs of beginning an intestinal transplant program are nominal, administrators said. UMass does not expect intestinal transplants, which typically cost $100,000 to $150,000, to be a drain, especially with insurers increasingly willing to pay.

The state Department of Public Health appears likely to approve the UMass Memorial program soon, having already convened a panel of experts to review the medical safety of the procedure.

Daniel Canal, now 18, is proof that the surgery can work.

His intestinal, liver, pancreatic and stomach transplants were performed at the University of Miami. Twice, within a few weeks in 1998, he got all four organs. Twice, they failed. On the third attempt, they began working. Today, Daniel is a college freshman.