A 7:30 a.m. gentle nudge lets Connor Swetof know it's time to wake and prepare for school. Like any second-grader responding to morning as an unpleasant time, he flings the covers back over his head.
After about five minutes and with much reluctance, he drags his still-tired little body out of bed and flops down on the couch in time to tune in to “Jimmy Neutron” on TV. Connor gobbles a few pieces of cinnamon-sugar toast, dresses and jumps into the car with his mother and sister to begin a day of learning at Adlai Stevenson Elementary School in Plum.
Looking at Connor, no one would know the past eight years have been an uphill battle to adapt to a debilitating injury at birth that destroyed his left arm.
Today, Connor has feeling from his shoulder to his elbow, but none from his forearm to his hand. He also has no use of the thumb on his left hand but is able to squeeze an object. For now, he wears a brace that helps to protect his arm from injury.
“I don't feel different. My left arm is like my buddy,” Connor says. “I feel OK with my arm being different.”
At birth, Connor received an injury to the brachial plexus that severed three of his nerves and tore others. (The brachial plexus is a network of nerves that conducts signals from the spine to the shoulder, arm and hand.) The three severed nerves control the lower arm from the elbow to the hand.
“It is estimated that one to four per 1,000 children are born with this injury,” says Richard Looby, vice president of the United Brachial Plexus Network. “That would equate to 4,000 injuries in the United States alone. This injury occurs more often than Down syndrome or muscular dystrophy.”
A brachial plexus injury occurs when the person who delivers the baby pulls excessively in an effort to reduce a complication known as shoulder dystocia — the baby's shoulders get stuck in the mother's pelvic area — Looby says. The extreme force can tear the nerves partially or completely, leaving the infant with a paralyzed arm. That's what happened to Connor.
The first few hours of Connor's life were trying for his parents, Dave and Linda Swetof of Plum. When Connor was delivered, he was not breathing and was swept away to the neonatal intensive-care unit.
“I just knew something was wrong,” Linda says, speaking in a voice that brought back the memory of July 18, 1996. “I didn't know if my baby was dead.”
Three hours after giving birth, the Swetofs learned of their son's injury. “Connor was born in North Carolina, because my husband was in the Marines and stationed at Camp Lejeune,” Linda says. “The pediatrician came in and let me know that he had a brachial plexus injury. I had no clue what he was talking about, and our family seemed so far away.”
The Swetof family endured three months of worry while they waited for the MRI that would determine the extent of Connor's injury. Until then, Connor underwent occupational and physical therapy from the time he was 7 days old. With the MRI performed, the couple learned that three of the nerves that control Connor's lower left arm from the elbow to the hand — C7, C8 and T1 — were severed. The T1 nerve also affects Connor's breathing — he exhibits symptoms of asthma during winter months.
After the extent of Connor's injury was determined, the Swetofs filed a lawsuit against the doctor who delivered Connor. The Swetof family moved back to Pennsylvania and had to return to North Carolina just once because of the lawsuit: when Connor's arm was to be examined.
“The hardest part of the suit was when we had to take Connor to be examined,” Linda Swetof mutters. “He had to take off his shirt and show what his arm looked like at the time. I could see that he was uncomfortable, and that made me uncomfortable.” After a seven-year battle, the Swetofs settled out of court. A trust fund was established for Connor, and when he reaches his 19th birthday, he will be eligible for an annual payout.
During a seven-year period, five surgeries were performed to give Connor better use of his arm. Two nerve-graft surgeries were performed when he was 7 months and 18 months old at Children's Hospital of Pittsburgh. A nerve graft is the process of taking nerves from the backs of Connor's legs and rerouting them in the arm, Swetof says. In addition to a nerve graft at 18 months, Connor also had a tendon transfer that tightened and repositioned the muscle in his upper arm. A year later, Connor found himself back in the hospital preparing for his third surgery, a tendon transfer.
“Before each surgery, there were butterflies in my stomach,” Connor says. “The butterflies were because I knew my arm would be different each time I would wake up, and I didn't know what to expect.”
The Swetof family traveled to Houston's Children's Hospital for a bicep-lengthening surgery. The surgery was to relax Connor's bicep, Swetof says. The most recent surgery was performed at the Shriner's Hospital in Philadelphia. Connor underwent an osteotomy to change the position of his arm so that his palm would face down, Swetof says.
“He has been so brave, strong and displayed a lot of courage through all of his surgeries,” she says, choking back tears. “I don't know what else to say but that he is a very brave boy.”
Despite the lengthy surgeries and sleepless nights, Connor assumed the role of a typical toddler, and now a young boy. “It took him a bit longer to develop than other kids his age, but he did the things typical kids do,” Swetof says.
“It is just amazing to see how he has adapted over the past eight years,” she says. “At times, I just want to cry, but then I realize that he is learning and adapting more and more every day.”
A year ago, in October, Connor was helping his mother rake leaves in the yard. When his mother asked what he would like for Christmas, Connor replied, “A new arm so that I can be normal.” For Swetof, the only thing she could say, holding back tears of hurt, was “That's what makes you special.”
Connor has learned to do many things with one hand when most folks would use two. “It seems like there is nothing he can't do,” Swetof says. “He has accomplished riding a bike, tying his shoes, playing Nintendo, and he plays baseball and soccer, all with one hand.”
Although he has come a long way, there are things that he still cannot do but will be able to do as he gets older. “He has trouble buttoning his pants and cutting his food, simple things we take for granted,” Swetof says.
Connor has received inspiration from his parents and older sister, Ciera, 11. His parents are advocates to make sure he receives the proper care, and his sister helps to defend him when he faces a complicated situation. “If anyone picks on him, she is the first to defend him,” Swetof adds.
Seeing her son grow into a typical young boy has brought much joy to her life. “I watch Connor through my eyes some days, and he just amazes me with the things he has accomplished,” she says, “and other days, I am sad and cry because of things he wants to do or things people say to him.”
Knowing her son will grow to be a normal teenager, Swetof still thinks of the those hard days of the past. “Seeing the hurt in his eyes is the hardest thing for me.”
For Linda and Dave Swetof, there is a motto that hangs over their heads. No one can see it or read it but Connor: “Never say you can't. If you don't try, then what's the point.” Additional Information:
Awareness Week
The fifth annual Brachial Plexus Injury Awareness Week will be observed Oct. 17 through 23. The week is dedicated to bringing brachial plexus injuries to light.The United Brachial Plexus Network tries to reach new families, individuals affected and families with newborns, so that they become aware of support and information that can be provided.
