Afghan baby with rare disorder seeks care at Riley

Like many others in Afghanistan, Zarif Ahmad Akbarian followed closely the story of young Qudrat Wardak, the infant boy who 10 years ago traveled from an Afghan refugee camp to Indianapolis for life-saving heart surgery.

But Akbarian never imagined a child of his would find himself in a similar situation.

Thursday, after two straight days of travel from their home in the northwestern corner of Afghanistan, Akbarian and his wife arrived in Indianapolis with their seven-month-old son Nima, who since birth has suffered from a condition that makes it difficult for him to breathe or eat.

The Rotary Club of Brownsburg, the same group that brought Qudrat here, helped pave the way for Nima's evaluation and treatment at Riley Hospital for Children at Indiana University Health.

For now, doctors are still deciding how best to proceed with Nima's care.

On the most immediate level, Nima's weight — a mere 10.5 pounds — is the greatest concern, said Dr. Abigail Klemsz, a Riley neurodevelopmental pediatrician involved with Nima's care. Nima, whose name means "great man" or "hero" in his native language, would be considered underweight for a child half his age.

"I know that (Nima's) condition is not good, but I'm sure that the people here are doing their best to save him," said his father, a physician and epidemiologist from Herat, Afghanistan's third-largest city.

After sailing through surgery here and recovery, Qudrat died two days after returning to Afghanistan, devastating his doctors and supporters in the United States.

The Qudrat tale may have ended sadly. But Akbarian said he believes there was nothing else that could have been done for Qudrat.

"Death is not in our hands," he said. "When it comes, it means that God has decided to take that over."

Akbarian said he knew his son's only chance was to be treated here.

Akbarian and his wife Zohrah Rajabi knew Nima needed treatment from the moment he was born on Nov. 18. He could not swallow food and had difficulty breathing.

Doctors saw that Nima had a condition known as a congenital tracheoesophageal fistula, in which the two pipes — one for breathing and one for eating — are connected.

All of the family's savings went to pay for two surgeries and subsequent hospitalizations for Nima back home. After each procedure, doctors assured his parents that soon he would start to grow.

But still Nima failed to thrive.

In February, Akbarian traveled to the United States to speak at a conference in Washington, D.C. While changing planes in the Atlanta airport, he happened to bump into a colleague he knew from back home, Dr. Suzette Kakar, an American-born physician who was married to one of the top health officials in Kabul.

The two had not seen one another for a while and they chatted briefly, catching up on each other's lives. Akbarian mentioned his new son and his concerns over his health.

Email me, Kakar said. Then the encounter ended.

"We were at the airport for just a few minutes," Akbarian said. "She had a flight and I went to D.C."

Kakar and her husband had studied at Indiana University. So when she received Akbarian's email, she forwarded it to Jim Graham, who had helped orchestrate Qudrat's treatment in the United States years ago.

Graham reached out to his friends at Riley Hospital and presented Nima's case. Might doctors here be able to help, he asked. When they answered in the affirmative, Nima became the fifth Afghan child brought here for treatment by the Gift of Life program.

Graham's wife, Roberta Graham, said her husband grew so worried that Nima might not survive that he could not sleep for several nights before the child arrived. The Brownsburg couple was beaming on Friday, though, as they peered in on a sleeping Nima, with his parents nearby.

Although Nima does not require oxygen, he has trouble clearing secretions, his father said.

Nor has he met developmental milestones, Klemsz said, which may be due to his poor nutritional status. Because of his esophageal problems, Nima is fed through a tube in his stomach and it's possible receiving more calories will boost his condition, Klemsz said.

In the coming days, the Riley doctors will plot a treatment plan. Akbarian said he and his wife plan to stay for about six weeks and if more time is required, he will likely go home to the couple's three other children, a 12-year-old boy and twin six-year-old girls.

While the family's stay here coincides with the Muslim holiday of Ramadan, Akbarian said he would not find it difficult to follow the tradition of fasting during daylight hours.

During each of his son's previous hospitalizations, he refused to eat during the day, praying to God to save his son.

Call Star reporter Shari Rudavsky at (317) 444-6354. Follow her on Twitter: @srudavsky.