Tyler’s story: 20 surgeries with a smile

20150624_Tyler20thSurgery-1Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”

For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.

Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude. Before his last operation Tyler wowed Boston Children’s Hospital staff with an impromptu dance from his hospital bed.

His first surgery, which closed the lesion on his back, took place at Children’s Hospital of Orange County (Calif.) when he was just one day old. “His surgeons there performed his first six surgeries and saved his life,” says Tyler’s mother Amy.

But Amy and her husband Steve wanted to relocate home to the east coast to be close to family, so they moved to Vermont when Tyler was 1 and transferred his care to Boston Children’s Spina Bifida Center. “Before we moved here, Dr. Scott and Tyler’s new team at Boston Children’s consulted his doctors in California. We felt like they knew him before they even met,” recalls Steve.

Dr. Michael Scott, neurosurgeon in chief, emeritus, was one of the family’s first contacts at Boston Children’s. Dr. Ben Warf, neurosurgery director of the spina bifida clinic, has provided follow-up care in the hospital’s Spina Bifida Center.

Tyler’s tracheostomy

One of Tyler’s early surgeries was a tracheostomy, or trach, at six months old. The trach, a tube placed into a surgical opening in Tyler’s windpipe, helped Tyler breathe and reduced pressure on his vocal cords.

Tyler and Steve after his trach was removed.
Tyler and Steve after his trach was removed.

“People don’t often say it, but the trach was a blessing,” says Amy. Unlike many toddlers with tracheostomies, Tyler could eat by mouth. And Amy and Steve normalized the trach, even taking Tyler, who was a toddler at the time, swimming with his trach. Still they sensed their son could manage without it.

That’s when they met Dr. Roger Nuss, in otolaryngology. Nuss proposed a complex airway reconstruction, a three-surgery procedure that had been performed a handful of times.

When Tyler was 3, Nuss completed the series of surgeries, transferring cartilage from Tyler’s rib cage to enlarge his airway from about 1 mm to 4 mm. The goals? Help Tyler breathe independently, provide more room for his vocal cords and remove the trach.

It worked. Before removing the breathing tube, Tyler passed a swallowing study to make sure food wouldn’t pass into his airway and a sleep study to make sure he could breathe through the night.

“The day Tyler’s trach was removed was the best day,” says Amy.

Tyler finds his voice 

Tyler after a bilateral club foot repair.
Tyler after a bilateral club foot repair.

And Tyler, who hadn’t spoken a word before having the trach removed, started speaking and has been talking nonstop ever since. “Tyler’s thriving. Every time I see him he’s breathing well without ventilation or oxygen, and his voice and speech have improved,” says Nuss.

One thing Tyler expressed to Steve and Amy was his desire for independence. “I want to walk more and do things with my friends,” says Tyler. So Steve and Amy have forged ahead with elective procedures to help their son realize his goal: to walk with forearm crutches and low-level braces. Tyler skiing

Enter Dr. Lawrence Karlin, orthopedic surgeon. Karlin has completed a series of orthopedic surgeries from club foot repairs to hip realignment and tendon releases (osteotomy) to straighten his femur.

Though it can be difficult to put their son through the elective procedures, Amy and Steve are committed to helping their son realize his goals, simultaneously cautioning and encouraging him by telling him, “We’re going to help you get there. It might not be easy, but we’re in it together. There are no limits to what our family can do.”

Some days are tough, says Amy, recalling a day with Tyler when her son didn’t want to be at the hospital. “Dr. Karlin told me about a patient with spina bifida who walked down the aisle at her wedding. He said, ‘She made it that far because her mother pushed her when she needed it. You’re doing the same for Tyler. It will pay off in the end.’ That really made my day.”

What’s next for Tyler? This summer will bring YMCA camp and possibly training camp with his football hero Tony Romo. “Tyler has surprised a lot of people. At 3, no one would have predicted he’d do so well. His family is so upbeat—he’s in the perfect environment to be successful,” says Nuss.

Learn more about Boston Children’s Spina Bifida Center.