Four new organs, one birthday
Dr. Heung Bae Kim took the call early on Aug. 30 -- a baby, somewhere, had died, and its organs were available. Kim wasted no time. His patient, a Kuwaiti infant named Abdullah Alazemi, was at death's door as, one after another, his internal organs had deteriorated and begun to fail. At that rate, he might not live to see his first birthday.
This week, Abdullah is scheduled to leave Children's Hospital, the recipient of New England's first-ever abdominal quadruple organ transplant surgery, in which doctors gave him a new liver, a new small intestine, a new pancreas, and a new stomach. He turns 1 next week.
The procedure was a surgical milestone, four complex transplants performed simultaneously. The costly surgery was paid for by the Kuwaiti government, which has an arrangement to send some of that nation's sickest children to Children's.
Abdullah's story embodies the serendipity, both tragic and happy, of organ donation: one infant nears death; another happens to die, and in the nick of time the two are brought together.
''I feel like they are part of my family," said Reem Alazemi, Abdullah's mother, of the parents of the deceased boy whose organs keep her son alive. ''I cannot find words enough to thank them."
Alazemi's first son died in 1997, before his first birthday, of severe Hirschsprung's Disease, an extremely rare condition that disables the intestines, making it impossible for the patient to eat. Reem Alazemi had no clue the disease was inherited, but saw it immediately in Abdullah as well, who could not eat from the day he was born. He was nourished through an intravenous line, but the arrangement damaged his stomach, pancreas, and, most dangerously, his liver.
His overwhelmed Kuwaiti doctors contacted that nation's Ministry of Health. Abdullah's father, Ahmed Alazemi, had connections: He is an interior ministry official who has helped police Kuwait's perilous border with Iraq. The Kuwaiti government, rich with oil profits, has long sent young patients to Children's, which a hospital spokeswoman said has a ''working relationship" with the Persian Gulf country.
Abdullah arrived in Boston in February weighing 8.8 pounds, and was jaundiced, malnourished, and near death.
''He looked horrendous," said Kim, who realized even then that Abdullah's case would be unique.
Kim had just helped get Children's intestinal transplant program off the ground. In New England, only UMass Memorial Medical Center in Worcester has done a successful documented intestine transplant -- last spring in an adult woman. In April, Abdullah was placed high on a national waiting list for infant abdominal organs because of his dire condition. But the organs had to be from an infant of nearly the same size. The odds were slim that they would become available, and Kim thought his new patient might die.
Abdullah's parents moved into a local Best Western. They all waited.
Then, in August, the call came. A donor infant was brain dead, meaning a ventilator was keeping the child's heart beating and the organs nourished with blood. The infant's name and background have been kept anonymous, as is the case with all donors. Kim rushed to the child's hospital bed and began flushing the organs with a preservation solution that would keep them fresh for about 12 hours. He wrapped them in plastic, placed them in an Igloo cooler, and was driven by ambulance to Children's.
A surgical team there had already opened Abdullah's abdomen and begun removing his diseased organs. The operation was simple in one sense: Surgeons only had to connect the new organs to a single major artery and a vein, which supply most of the organs in the abdominal region with blood. But Abdullah's abdominal cavity was a bloody mess as Kim started placing the new organs in, one by one: the long, snakelike intestines, the liver, the delicate stomach pouch, and, wedged within, the tiny J-shaped pancreas. All this in Adbullah's tiny abdominal cavity, about the size of a softball.
Reem Alazemi waited outside the operating room, and said she felt one thing: ''Houff," Arabic for absolute fear.
Kim, too, was worried: ''He was high risk, no matter how you looked at it."
A four-organ transplant involving the intestines is among the rarest medical procedures, achievable only because of advances in antirejection drugs. To prepare for this moment, Kim had flown to Miami to watch surgeons do a similar procedure, and had been reading articles by the few other surgeons who had attempted it. It has been done successfully in the United States only about 90 times, mostly in adults. In a tiny infant like Abdullah, the risks and unknowns were even more acute.
In the operating room, six hours passed. And then Kim and the two other surgeons, Roger Jenkins and Tom Jaksic, emerged smiling. The operation had gone well. But now they all waited to see if Abdullah's body would reject the organs, or if the antirejection drugs he had been given would work. An intestine rejection was particularly worrisome: Filled with bacteria, intestines can spread deadly infections during rejection.
But Abdullah progressed well, leaving the intensive care unit after eight days. It was half as long as his doctors expected. However, weeks later, an infection, likely from the intestine, sent Abdullah back into the ICU, near death. But a different drug therapy helped him bounce back.
In recovery, there was much work to do. Abdullah had never eaten. He instinctively shut his mouth when food was placed near. Slowly, nurses coaxed him to swallow a little baby formula, though most of his nutrition is still pumped directly into his stomach. He also remains too weak to stand.
''I think those things will come along in time," said nurse practitioner Julie Iglesias, who ran the nursing team during the operation.
Last Friday, Abdullah, in knit light blue pajamas, rolled happily in bed, still tethered to a food tube. Red Sox catcher Doug Mirabelli visited, though Reem Alazemi had little idea who he was. She had recently taken her son, who has never lived outside a hospital ward, down to the Children's lobby to see the aquarium there. He was mesmerized by the fish and a bit perplexed by all the people walking about, she said.
There is not much data on patients like Abdullah. About three in five intestinal transplant patients have survived five years or more.
''He looks pretty good, all things considered," said Kim, who believes Abdullah's prospects to live into adulthood are good, though he will have to take transplant drugs for life and will face high risks of cancer and infection.
Abdullah is scheduled to be discharged sometime this week, said doctors, but will remain in Boston for monitoring. His parents have left their large extended family in Kuwait, including two daughters, to be at his side. They hope to return to their homeland within months, though they are prepared to stay for years, if necessary.
''The most important thing now is Abdullah and his health. But I believe he will have a good life," said Reem Alazemi, adding, ''Inshallah," Arabic for ''God willing."
Meanwhile, today Abdullah will celebrate, slightly early, his first birthday. His mother plans to serve cake.
Raja Mishra can be reached at firstname.lastname@example.org.