Acehnese boy owes life to mother's persistence

Maggie Tiojakin, Contributor/Boston. U.S.

"Alhamdullilah (Praise be to God)!" shouted Miswar, 22, as she sat with both hands covering her face, tears brimming in her eyes.

Her husband, Mahfud, 28, rested his elbows on his knees, his head was bent toward his chest. A deep, quiet smile sprung from his face. "Alhamdullilah," he said, following his wife, acknowledging an unexpected miracle.

Just a few minutes beforehand, Dr. Daniel Ryan, a top surgeon at Massachusetts General Hospital (MGH) in Boston, had come to deliver the news: Your son's surgery went well, and we successfully removed the entire tumor from his liver. Congratulations."

Fadhil Muammar is a 17-month-old boy who was flown all the way from Banda Aceh to Boston, U.S. to receive treatment a few months after the tsunami struck his hometown in December. They arrived in Boston on March 19.

Natives of Aceh, both Miswar and Mahfud had gone the last mile in an effort to cure Fadhil's disease -- if only they could find out what it was. From the age of seven months, Fadhil's abdomen had begun to show signs of unnatural swelling.

Eventually, his stomach looked more and more distended. At night, he often suffered from seizures and high fevers that sent his parents into a panic.

The couple then attempted to see a number of doctors in Jakarta, hoping they would obtain more information, but each doctor gave them a different diagnosis.

"Some said it was cancer, others said it was body waste," reflected Mahfud. "And then there were those who simply shrugged and had no idea what it was. So we weren't convinced," he said, wistfully.

Although Fadhil remained an active child, his parents remained concerned. "The seizures and fevers scared us," said Miswar, remembering nights when she would stay awake for fear of her child's condition. "The muscles in his abdomen would get so tight he could not breathe," she said.

For some time, the couple traveled back and forth between Aceh and Jakarta in their mission to cure Fadhil -- all of which proved to be fruitless. Then, disaster struck.

They lost their home and everything they had built together. It was an exceptionally devastating event, followed by highly disruptive living arrangements.

Both Mahfud and Miswar, like hundreds of thousands of other Acehnese, believed that all hope was lost. Their home was ruined, jobs were impossible to find and food was scarce. Their basic daily needs were barely met, and the only comfort they had was the outpouring of assistance that had arrived in Banda Aceh in the wake of the disaster.

One such arrival was a relief mission launched by Project HOPE, a joint effort between a non-governmental organization and the U.S. Navy, in which hundreds of foreign medical personnel had volunteered to help tsunami survivors on the hospital ship USNS Mercy.

Fadhil had injured his head while trying to escape the rush of water, which, later on, led to an infection. With her husband living in Jakarta (after the tsunami) Miswar was accompanied by her younger sibling to seek help at the Zainal Abidin Hospital, one of the few still running in Banda Aceh.

"After they gave Fadhil antibiotics for his head wound, the German doctors asked me what was wrong with his stomach," said Miswar. "I told them, through an interpreter, that I didn't know."

It took a mere few hours for the doctors to figure out what she had been trying to understand for almost a year. There was a tumor attached to Fadhil's liver. It was benign. However, given enough time, it would become a threat to his life.

Miswar and Fadhil were immediately flown to the USNS Mercy, which had dropped anchor off the Aceh coast, for more tests. The ship was so huge Miswar had a hard time adjusting to it.

On the ship, Miswar met medical volunteers from MGH, to whom she ended up owing her son's life. And one, in particular, to whom she feels indebted for making her dreams come true. "What he has is a mesenchymal hamartoma -- a liver mass," said Vicki Noble, M.D., an emergency medical doctor at MGH, who had been on the rescue ship earlier in March. "Lucky for Fadhil, it's in an area of the liver that is dissectable."

Because the surgeons on board felt that the ship was ill- equipped for the type of surgery he needed, the medical staff unanimously decided that it would be best for Fadhil to undergo the surgery elsewhere.

Miswar, who has the reputation of being a resilient mother, tirelessly pleaded for doctors to save her son's life. She refused when they tried to refer Fadhil to Jakarta for medical care, reasoning that she had already gone to most of the hospitals there. So the doctors told her that they would try and find another way to help her son.

When Miswar was discharged from the ship with a promise she wasn't sure they could keep, she felt as though she had come back empty-handed from a life-long battle. She was going to accept her son's fate as it was handed to her.

Two days later, fate came knocking on Miswar's door. Noble, who was primarily in charge of patients on the ship, disembarked with Roger Aruan, the interpreter, to inform her that a hospital in Boston would take on her son's case if she was willing to take him all the way to the U.S.

Funding would be borne entirely by Ray Tye Medical Foundation, which was unavailable for contact at the time this article was written.

"I would have gone anywhere [the doctors] wanted me to go, if it meant my son was going to be healthy," said Miswar, during an interview at the family's temporary housing in the Beacon Hill area of Boston. "I had nothing else to lose."

Yet, one problem still loomed large: they had three days to process the requisite paperwork before the ship was scheduled to return to the U.S.

"We got the passports done within a day, and we obtained visas for all three family members within the next two days," said Roger, during an online interview.

"There was a lot of running around," said Mahfud, chuckling at the experience. "At one point, we were physically chasing after the helicopter that was going to bring us back to the ship."

Miswar, who feels overwhelmed at the kindness of strangers, often refers to Noble as the "angel" who saved her son -- a title that Noble repeatedly denied in a humble manner. Mahfud, a more reserved man, happily agrees with his wife.

"I cannot even begin to thank [the doctors and volunteers]," said Miswar, standing by her son's bed, her fingers reaching out to his face. Then, she glanced at Noble, who stood in the corner of the room.

Noble approached Miswar and gave her a warm hug. "It wouldn't have happened without Miswar's persistence," said Noble.

Perhaps it was chance, perhaps fate: Some might even say it was meant to be. For Fadhil's immediate family and relatives back home, it was simply a miracle.