Acehnese boy owes life to mother's persistence

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.