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Physical therapist Robin Irwin, left, stretches out Harleigh Belletete, 2, after a therapy session in Decatur. Because of a birth injury, doctors told Harleigh’s family she would suffer permanently from paralysis. She had only 5 percent use of her arm at 2 months old. After her first surgery in Houston in 2005, it jumped to about 50 percent. Her Texas doctor says she should have 80 percent to 90 percent use of her arm when it heals completely.
Daily photo by Jonathan Palmer
Physical therapist Robin Irwin, left, stretches out Harleigh Belletete, 2, after a therapy session in Decatur. Because of a birth injury, doctors told Harleigh's family she would suffer permanently from paralysis. She had only 5 percent use of her arm at 2 months old. After her first surgery in Houston in 2005, it jumped to about 50 percent. Her Texas doctor says she should have 80 percent to 90 percent use of her arm when it heals completely.

PREVAILING AGAINST PARALYSIS
Harleigh’s hope
Cutting-edge surgery in Texas healing Trinity 2-year-old’s birth injury

By Chris Paschenko
chris@decaturdaily.com · 340-2442

With an ear-to-ear smile, 2-year-old Harleigh Belletete of Trinity raised her right arm and pointed to her nose, performing a basic movement most people take for granted.

Doug Belletete and his daughter Harleigh at Station House 2 on Alabama 20 in Decatur.
Daily photo by Jonathan Palmer
Doug Belletete and his daughter Harleigh at Station House 2 on Alabama 20 in Decatur.
Harleigh's dad, Doug Belletete, a Decatur firefighter, said the youngest of his three children suffered a brachial plexus injury during birth. Doctors in Decatur and Birmingham diagnosed the condition as Erb's palsy, but the family refused to accept a doctor's opinion that she would suffer permanently from paralysis.

Belletete's wife, Dena, said insulin treatments for her gestational diabetes could have contributed to the difficult birth procedure by increasing the growth rate of the baby in her womb.

"With Erb's palsy, 99 percent of the time it is due to excessive traction used to get the baby out from being stuck in the birth canal," said Belletete, who is also a paramedic. "Dr. Jeffrey Hull discovered what it was and knew nothing could be done at Decatur General and referred us to Children's Hospital in Birmingham."

Belletete said Dr. Paul Grabb, a pediatric neurosurgeon, formerly at Children's Hospital, concurred with Hull's diagnosis and recommended surgery.

"They took a nerve out of my leg," Harleigh said, pointing and peering at the scar from the surgery she doesn't remember when she was 4 months old.

"They took a long section of nerve from her right calf and grafted it into her spinal column and ran it down to her shoulder to try to reverse some of the damage that had been done," Belletete said. "They told us it would take from six months to a year for the graft to grow and take effect. It only grows a millimeter per day, so it takes a long time to grow and do what it needs to do."

When Harleigh was between 18 and 20 months old, Belletete said, the nerve graft showed no signs of success.

"In layman terms, they said this is how it's going to be, it's not going to get better and basically learn to deal with it," he said, "But at this point we weren't taking no for an answer."

Hope in Houston

Robin Irwin, Harleigh's physical therapist in Decatur, told the Belletetes about Dr. Rahul Nath, director of the Texas Nerve & Paralysis Institute and Nath Brachial Plexus Institute at Texas Medical Center in Houston.

"We did research on the Internet," Belletete said. "And everything about Erb's palsy had Dr. Nath's name attached to it in some form or fashion. We contacted him and sent him all the medical files as well as a videotape of her daily activities."

Nath agreed with the diagnosis and encouraged the Belletetes to take Harleigh to Houston.

"When she was 19 months old, she had her first surgery," Belletete said.

Harleigh pulled her shirt over her shoulder, revealing the tiniest of incision scars.

"At Children's Hospital, they told us the nerve graft didn't work, but when we got to Texas, Dr. Nath sent us to another physician, Dr. Rajeev Kumar," Belletete said. "One of the first things the neurologist did was a nerve conduction study. He told us that not only had the graft been successful and was working, but he discovered Harleigh's biceps muscle had not been working since she was born."

Harleigh's triceps muscle was so strong that it overpowered her biceps, Belletete said, keeping her from curling her arm upward.

"They used a relatively new procedure and injected her triceps muscle with Botox," Belletete said. "It temporarily paralyzed her triceps muscle, giving the biceps time to strengthen and catch up. The cool thing was that Dr. Nath stimulated her nerve internally and her arm curled up."

Belletete said when she saw the movement, his wife cried.

"It was the first time we'd seen her curl her arm up," Belletete said.

Harleigh returned to Houston in September for a triangle tilt surgery, Belletete said.

Unusual healing

"When she was 2 months old she only had 5 percent use of her arm," he said. "After the first surgery in Houston in November 2005, it jumped up to about 50 percent use with a greater range of motion than she previously had. She's still in the healing process, but Dr. Nath said she should have 80 to 90 percent use of her arm when it heals completely."

Dr. Nath said about 90 percent of his patients come from outside Texas.

"The issue is that this is an unusual injury, only one in 1,000 births," he said. "Half get better and recover in a few days, but half don't."

Nath, who sees about 250 children per year, said the new treatment technique is relatively unknown.

"There's not a lot of writing about it in the scientific community," he said. "The textbooks are from the 1930s, which say leave it alone and it'll get better ... The parents who refuse to take no for an answer are the only difference."

He estimates 40,000 to 50,000 children suffer from similar birth injuries per year, but only 20,000 need surgery.

"To see her arm look like a normal child's is the big thing," Dena Belletete said. "Even though kids don't mean it, they can be cruel when they see someone who looks different."

Harleigh wears an arm brace at night to help train her shoulder to move properly.

"She's been such a trooper," Doug Belletete said. "It has never fazed her, never slowed her down. She has always managed to compensate for her disability. I guess one of the things that's odd is my uncle is 55 years old. He has the same condition, but back when he was born there was no technology for this. He has about 10 percent use of his arm."

Belletete said he didn't know if Children's Hospital was aware of Dr. Nath's achievements.

Adam Kelley, a Children's Health System spokesman, researched the matter and issued a statement on behalf of the hospital.

"Federal privacy laws restrict us from commenting on a patient's care," he said. "However, we encourage families treated here to be well informed on their care and are pleased to hear reports that this patient is improving."

Doug Belletete said Harleigh will return to Houston in March for a checkup.

"The surgery in September should be the last one," he said. "When she gets to be 7 or 8 years old, she may have to go in for a tendon lengthening."

Belletete said doctors told them Harleigh had a severe case.

"But there was a family in Texas that was going on their eighth surgery," he said. "I'd classify that as severe. Dr. Nath told me that by the time she gets in school that her immediate family will probably be the only ones who'll notice she has a problem."

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