Doctors Help Boy With Giant Hand

N.Y. doctors donate fees to treat a boy with a rare disorder.

Nov. 20, 2008 — -- Rohit Bachani was born with a small lump on his left hand that, by the time he was 10, was so large he had to hold his arm high above his head at all times to avoid excruciating pain.

But today, in New York City, the boy will have the last of five surgeries that will reduce his larger-than-grapefruit-size hand to near normal and allow him to return to his native Pakistan.

Rohit was born with a congenital condition called arteriovenous malformation, or AVM, which had caused the tissue in his hand to swell to gigantic proportions, nearly swallowing up his little fingers. Doctors had told the family they had no recourse but to amputate the hand.

Dr. Robert Rosen, an interventional radiologist at Lenox Hill Hospital and one of only a handful of doctors in the field capable of this surgery, agreed to perform the multiple embolization procedures to save the boy's hand.

And it wasn't only Rosen who donated his fees. So did all the other specialists -- including vascular surgeons, anesthesiologists and the hospital itself.

One Lenox Hill administrator estimated the total treatments would have likely exceeded $300,000.

Parents Call Doctor 'Angel'

The boy's parents, who do not speak English, called Rosen an "angel," according to family translators.

The family is from a small village in Pakistan and had been living with relatives in Texas for the last year while their hometown raised money for the boy's operations. The half-price charity rate for each treatment would have amounted to their entire life savings -- $15,000.

"He's the smartest kid in his class and the most popular," Rosen told "That's amazing for a kid with such a striking malformation. The other kids love him."

Rohit has "Uncle Nawund" Kumar of Beaumont, Texas, to thank for finding Rosen. Kumar scoured the Internet for the best doctors in the field and organized the fundraising that would pay for the boy's air fare to New York City, according to a doctor's assistant, Mela Daniel.

The family also found support from the Vascular Birthmarks Foundation.

The boy and various members of his family have been shuttling back and forth to the East Coast since the first procedure last January.

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On Tuesday, Rosen injected Rohit with polyvinyl foam to break apart the tumolike growth, and today, Dr. Milton Waner of the Vascular and Birthmarks Institute of New York will remove the embolized tissue that remains.

Boy with Enlarged Hand

Congenital vascular malformations, like Rohit's, stimulate the growth of blood vessels -- as in varicose veins -- that enlarge the limb. Because the growths "steal" blood from the circulatory system and restrict flow in the tissue and the nerves that surround them, they can cause excruciating pain.

In the past, the only remedy for these conditions was surgical removal, which could cause the risk of blood loss and even death. But now, catheters have been developed and the growth is injected with substances like biological glues and absolute alcohol to break down the lesions.

The condition, which develops in vitro when the vein-artery system becomes intertwined, is not genetic. It should also not be confused with external hemangiomas, which are commonly known as "strawberries" and often disappear without treatment.

Rare and 'Complicated' Condition

"No one knows why the vascular system organizes like this," said Rosen. "It's a complicated affair, and unlike birthmarks, these malformations are part of the body tissues."

As is typical in these cases, the lump on Rohit's hand was small at birth but eventually grew at the same rate the child grew, according to Rosen. By the time he was 4, the mass involved his forearm and was so large none of his fingers were visible.

"His hand was filled with blood, and ... he literally had to live with his hand above his head," said Rosen.

The doctor described the boy as "charming" and was surprised at his adjustment, despite the pain and disability. Local doctors had told the family, "There was nothing to be done."

Since arriving in New York, the boy, who speaks "superb English," has acted as translator for his family, none of whom, except the uncle, speaks English.

For the last year, Rohit's mother was unable to come to the United States because she had no visa. But hospital officials said Rosen, whom they described as a "modest" man who didn't like fanfare, successfully pleaded with the U.S. embassy to secure her visa so she could be with her son for the final round of surgeries.

Rohit was understandably nervous before this week's surgery, they said.

Surgery for a Functional Hand

"He's already gone through several of these, but like with all little kids with the anesthesia mask, he's smiling for a few moments, then he freaks out and cries and then settles down," said Rosen. "He's a really sweet kid."

Rohit's prognosis is "excellent," according to Rosen, and the boy is already beginning to be free from pain and has a functional hand. "You can see his hand and fingers."

Sadly, Uncle Kumar, one of the heroes in Rohit's story, was unable to come to New York City for the final treatment because of family issues in Pakistan, but in his stead was his son, Pawan Kumar, 22, who also speaks English and works as a hotel manager in Texas.

With the mother's visa now secured, both of Rohit's parents also were there.

"It was very emotional for them," Pawan Kumar said. "He said he was really missing his mom.

"Dr. Rosen in an angel for us," Kumar said. "He is the best guy, and this is like a dream come true.

"If God gives us this problem, God gives us a solution," Kumar said. "He gave these doctors to us."