Beyond Spinal Cord Injury: Ava’s Story

She had gone from a teenager on the verge of independence to immobile in a hospital bed, her parents taking turns spoon-feeding her.

“My world had been flipped on its axis overnight,” Ava says. “Everything felt like it was falling apart.”

Unfortunately, in many senses, this was true. Even a minor spinal cord injury is life-altering. Ava’s was devastating. The life she’d known had shattered into pieces.

What she came to realize, though, was that she was capable of putting those pieces back together — and in the process, make an impact Beyond Imagination.

Jonathan Martin, MD, Connecticut Children’s Division Head of Neurosurgery, looms large in Ava’s health journey. He led her emergency surgery. When she woke in the intensive care unit, he was the one who gently explained that she would never walk again.

He also happens to be Ava’s favorite source of comic relief, a distinction he owns with pride. In that first conversation, Ava replied along the lines of, “Gee, you sure know how to cheer me up.” Ever since, she has made heckling him her personal mission.

“Anyone with a brain knows Dr. Martin is an incredible surgeon. I have infinite respect for him. I wouldn’t be here without him. But I can’t let him know that!” Ava says. “Somebody has to take him down a peg!”

“Ava and I have a very special relationship,” says Dr. Martin.

The truth is, in the aftermath of Ava’s injury, humor was one of the few things that still came easily to her. So much else was a struggle. Besides adjusting to life in a wheelchair, even her hands were a major problem: Because of the nerve damage, her fingers wouldn’t move on command. She had zero grip strength. Even tiny acts of independence, like brushing her teeth or texting with friends, were suddenly impossible.

“Having those little, mundane tasks just completely torn away from me overnight, it was heart wrenching,” Ava says. “Gaining that independence back was extremely important to me.”

In the months that followed, she worked as hard at recovery as she ever had at competitive swimming. With the help of physical therapists and occupational therapists, she learned how to use a power wheelchair and tackle activities of daily living. She spent time with the spasticity services team, finding a way to manage painful muscle spasms — at first, through injections and, eventually, a medicine pump. She saw experts in urology, gastroenterology, and almost every other of Connecticut Children’s 30-plus pediatric specialists.

But her hands remained a barrier to independence. At one of their visits, Ava and Dr. Martin talked about how a nerve transfer might help. Ava thought she’d have to go outside Connecticut to get the surgery.

“He stops me mid-sentence and says, ‘We can do that here,’” Ava remembers.

A few weeks later, Ava met with pediatric orthopedic surgeon Sonia Chaudhry, MD, FAAOS, who leads Connecticut Children’s Hand & Nerve Surgery Program in partnership with Dr. Martin. They hit it off right away. “Ava is a firecracker,” Dr. Chaudhry says.

Dr. Chaudhry is internationally trained in peripheral nerve surgery for infants through young adults, a rare expertise in the field of pediatrics. To do the transfer, she took a functioning nerve from Ava’s elbow and used it to restore her fingers’ ability to bend. She then took another nerve from Ava’s forearm, originally used to twist the palm upward, and gave her fingers back the ability to straighten and release. Then she repeated it all on the other side of her body.

The surgery transformed how Ava can use her hands and, as a result, live her everyday life. Before, she needed her school-assigned paraprofessional to take notes for her and push her through the halls. After, her paraprofessional mostly just carried her backpack.

“I can push myself around. I can write again. I can feed myself,” says Ava. “If it weren’t for Connecticut Children’s, none of that would’ve been possible. I am forever indebted to them.”

“I hope that’s the takeaway for other young people and families,” says Dr. Chaudhry: “There are always additional options to explore.”

For all the medical experts who helped Ava, the biggest turning point in her recovery didn’t occur in a doctor’s office. Instead, it was the place she’d been missing and dreading most – her high school swimming pool.

Practically since age 4, swimming had been her life. When she wasn’t actually in the water, she was talking about it or thinking about it. Plus, she’d been good — really good. The season before her injury, she made states. Returning to the pool brought her face-to-face with everything she’d lost.

“Realizing I would never be able to compete in that same capacity was almost just as difficult, if not more difficult, than realizing that I would never walk again,” Ava says.

Still, she wanted her beloved swim team in her life. At first, she offered to help with scoring and timekeeping. Soon, the kids started coming to her for pointers. Within a few months, she was a full-blown honorary coach.

The younger swimmers, in particular, gravitated to her. They looked to her to celebrate their successes, and perhaps even more, to get through disappointment. She wasn’t one for moping. Instead she’d point out, bluntly, that some days are hard — that’s part of sports, and life. “But if you stay resilient and you give it time, things do improve,” she’d say.

Along the way, she started taking her own advice.

“For a long time, I’d felt like my injury was the end of the world. But coaching these kids helped me turn my point of view around. It helped me put the pieces of my heart back together,” Ava says.

Slowly, she started hanging out again with friends. At school, she was inducted in the National Honor Society. She threw herself into her senior capstone project, which focused on improving accessibility in healthcare. She and her family went on their first cruise. She put Red Sox games and concerts back on the calendar.

“Maybe I can’t go right down to the front row at Fenway Park, but I can still go to games. Maybe I can’t be on the floor at concerts, but I’m still there. I realized I don’t have to give all these parts of myself up,” Ava says. “Yes, things are different now. But sometimes different can be good. Sometimes you can find yourself in a new way.”

At Connecticut Children’s, a place where young patients overcome adversity every day, Ava’s team has marveled at her resilience.

“Trauma can visit any one of us,” says Dr. Martin. “How you deal with that physically is one component. How you deal with it mentally and emotionally is another. Ava has been an inspiration. She is beyond imagination.”

It’s been three years since the injury. Ava, now 19 years old, is preparing to study political science at college next year. During this gap year, she is back at the high school pool. A few months ago, the school officially hired her as an assistant coach.

She still has tough days, physically and emotionally. When that happens, she leans on her parents, her brother, and her friends. She remembers her support system at Connecticut Children’s, and how Dr. Martin needs her around for witty banter.

Most of all, she thinks about “her kids” on the swim team. When they have tough days, she wants to be there for them.

She thinks of one kid in particular, from last year. For the longest time, he’d been trying, and failing, to break a minute in the 100 freestyle. Through all his frustration, she’d never stopped urging him on — reminding him that setbacks were part of life, but tomorrow could be better.

Finally, he hit his goal.

“The first person he came to see was me. He was so excited — he had this huge smile on his face. He hugged me and told me that he had done it, he had finally done it,” Ava says. “And I realized: In this moment, this is exactly where I want to be.”