Grabbing the reins her own way

Chloe, a roder rider with brachial plexus, rides a horse during a barrel race.
Chloe Neff, a rodeo rider with brachial plexus birth palsy, will compete in barrel racing world championships. 

Barrel racing isn’t for the faint-hearted, that’s for sure.

In this rodeo event, horses and riders whip around barrels at lightning speeds. Tails flourish in the air and muscles ripple. Powerful horses are coaxed by their riders to spin around each barrel as quickly as possible.

One such duo, 16-year-old Chloe Neff and her horse, Raise a Glass Dancer, will soon be on their way to barrel racing’s world championships.

“If you keep trying and working at it, you can do anything you want to,” says Chloe. Her record for completing a barrel course is 16.6 seconds. “Right now, Glass and I are working toward a 15.”

In the Perry, Georgia, stadium where barrel racing world championships will be held later this year, Chloe’s parents may be the only people to notice anything seemingly different about Chloe, as she and Glass flash past the stands. That’s because Chloe, who has received care from the Brachial Plexus Program at Boston Children’s Hospital since she was 5 months old, sustained damage to her left brachial plexus nerve when she was born. The injury jeopardized Chloe’s use of her left shoulder, elbow, wrist and hand.

A shocking start

“It really touched us coming here the first time,” says Judy Neff, of Wallkill, New York, reflecting on her walk into the lobby of Boston Children’s 16 years ago with her husband, Bill, and their baby daughter in tow. “Seeing so many faces here for so many different reasons really helped us see how blessed our family was.”

From the start of her life, Chloe was a miracle baby. “I was told I could never have children,” Judy says.

So, when Judy suddenly discovered she was pregnant near the age of 40, she and Bill were simply overjoyed to be having a child. But things would not go smoothly for the new parents.

When she arrived on a hot, mid-August day in New York, Chloe’s umbilical cord was coiled tightly around her neck. Born ashen grey, she was immediately rushed by helicopter to a NICU in a Westchester medical center.

“She was flown away before I even had a chance to hold her,” says Judy.

Learning about brachial plexus

At the NICU, doctors discovered that one of Chloe’s hips did not have its ball correctly in its socket. Although concerning to the Neffs, it is a common condition that can be corrected with a special body brace. Even more worrisome, Chloe’s left arm was completely limp.

Brachial plexus birth palsy caused Chloe's left arm to be limp when she was born
When she was a baby, Chloe’s left arm was completely limp.

Judy’s labor had been difficult. Doctors explained to the Neffs that, during delivery, Chloe had suffered an injury to her left brachial plexus.

The brachial plexus nerves are located in the right and left sides of the neck. They each control feeling and movement in the left or right shoulder, arm, and hand. Stretches or injuries to the left or right brachial plexus sometimes occur when a baby’s shoulder gets stuck during birth. The condition is known as brachial plexus birth palsy.

The Neffs quickly found a physical therapist to begin working with Chloe. Soon, encouraging signs of movement appeared as Chloe began wiggling the fingers on her left hand.

With the help of Chloe’s primary pediatrician in New York, they searched nationally to find an expert. As Chloe neared six months old, they headed to Boston to see Dr. Peter Waters, MD, who directs the Brachial Plexus Program at Boston Children’s.

Keep moving

“Somewhere between one and four out of every 1000 babies born will have some degree of injury to their brachial plexus,” says Waters. “Some recover fully on their own by 6 to 12 months of age, while other kids have injuries that fail to gain complete recovery.” The most severe cases need microsurgery in the first 3 to 9 months of life to reconstruct the injured nerves.

“There’s also an in-between group of infants who do not need microsurgery,” says Waters. “Many infants and young toddlers initially benefit from physical therapy to improve use of their affected arm — Chloe was in that situation.”

Waters prescribed lots of activity in addition to formal therapy to keep Chloe’s left arm moving and gaining strength. The Neffs bought a swing set with a jungle gym, which they encouraged Chloe to play on using both of her hands. And then at the age of 5, Chloe began showing a marked interest in horseback riding. The Neffs consulted Waters about whether riding would be a safe activity.

Brachial plexus didn't stop Chloe from giving this horse a big hug
At the age of 5, Chloe began riding horses. The activity helped strengthen her left arm.

“I encouraged Chloe to do everything that other kids do,” says Waters. “Brachial plexus patients don’t seem to have higher injury rates than other kids.” That’s because, according to Waters, the brain is smart enough to compensate for the affected arm.

“We have lots of kids treated here who have performed at very high levels,” Waters continues. “And that’s what we want: for them to accomplish anything that they want to.”

A doctor in the family

Coached by Waters, who teasingly says using both arms “a million times a day” may be enough activity for rehabilitating brachial plexus injuries, the Neffs taught Chloe the importance of constantly using her “Lazy Lefty.” Along the way, they took home movies of Chloe’s rigorous activities and sent them to Waters.

“Home videos are a great way for me to keep tabs on Chloe and my other patients,” says Waters. “Not only do I enjoy seeing my patients thrive, but seeing them move around in their daily routines gives me a clearer idea of how well they are using their affected arm. It’s a much better ‘read’ than I can get by seeing them with limited activity in my office area for a checkup.”

For the Neffs, too, sending the videos became a special way to stay in touch with Waters. “We felt like he became part of our family,” says Judy.

Now, Chloe has a message for younger kids growing up with a brachial plexus injury.

“Keep working on what you want to do.”

Chloe, a rodeo rider with brachial plexus birth palsy, spins around a barrel on her horse, Glass
Chloe, 16, says she has come this far in the sport of barrel racing with the help of her two favorite horses, Glass (pictured here) and Neech (pictured in first photo), as well as the support of her trainers, Doreen and Christine Higham, and her parents. Now, Chloe and Glass are training hard for world championships.

Learn about the different types of brachial plexus birth palsy.