Shae has been a regular at the Spokane Shriners Hospital since she was a baby. It started with a one-week stint when she was 1 year old to address the scoliosis that was apparent in her spine.
From then on, it was check-up appointments every six to 12 months—up until this visit, which could be as long as three months and a week.
“I planned it to the day,” said Shae, now 14 years old. “It depends how fast my body stretches.”
The top and bottom of her spine are straight, but there is a significant curve in the middle. Shae started her most recent stint at Shriners in early January as a 4-foot-9 (and a half) teenager. But thanks to the halo that’s been slowly stretching her back, she is now closer to 4-foot-11.
The doctors’ goal for her is to “grow” 3 to 6 inches, the process of her spine straightening out to the point that the impending surgery will be most effective. But for now, she is waiting it out, a metal halo screwed to her head, moving around, on this snowy January day, in a wheelchair.
Yet through it all, Shae’s spirits have remained high. She, and her parents Debi and Steve, see that the end is about as near as the spring thaw.
“I feel like sometimes people let things get to them, to their head, and it doesn’t [for me],” Shae said. “My life could be so much worse.”
And her time at Shiners, she said, has been really great.
“So fun. It’s like a fancy hotel,” she said in a room off from the main recreation room, which is replete with tables for football, billiards and puzzles, among other diversions. “All the nurses are so nice, everyone’s sweet. The first week, you know everyone, and everyone knows you.
“It’s like a home and family away from your actual family.”
Shriners started in Spokane as a mobile unit in 1924 and has grown into a state-of-the-art hospital that treats thousands of children from babies to 18-year-olds each year. With the nearest site to the west in Portland, and the nearest to the east in Minnesota, Shriners Hospital for Children in Spokane has a large region of coverage, spanning four states as well as parts of Canada.
Its doctors treat conditions of various sorts, from same-day fractures and sports injuries to longer-term treatments such as Shae’s.
Shae’s stay is made easier because she completes school online—something she has done since fifth grade—and is able to complete work at her own pace from the hospital. Her parents and older siblings visit frequently and are able to stay in the same room as her if they wish to.
It’s that flexibility and personal care that Debi has enjoyed so much, and the ability to be at the hospital for such a long stay is, Debi said, in Shae’s best interest. Wearing the halo to stretch out Shae’s spine will make the surgery to insert metal rods into her back more effective, and they don’t need to rush it; they just need to wait until Shae’s spine has straightened out as much as it is going to.
“[The doctor said] it’ll take a commitment, but it really reduces a lot of risk,” Debi said. “We’ve known this was coming … this is just the best place to be.”
Shae and Debi were mostly alone on this Friday afternoon, as the hospital tries to line up most of its surgeries early in the week so that patients can recover at home, said Kristin Monasmith, director of marketing and communications for Shriners Spokane.
The hospital’s relatively smaller size allows its doctors to provide a higher level of care, Monasmith said, and that the “family centered wrap-around” is a hallmark of their system. Staff want their patients to be as independent as possible and to keep active when they can.
Shae’s condition worsened—or rather, became more painful—over the last year or two. Sitting for long periods of time became painful. Even making it through a movie was difficult, she said.
They told their doctor at Shriners, who advised them that this long-term visit would be wise. Shae, Debi and Steve live in Medical Lake, Washington, and they have grown accustomed to the drive.
“It takes 18 minutes, door-to-door,” Shae said. “I’ve timed it.”
The surgery, though, should be the final step for her. While the metal rods, once in place, will limit her some, the idea is that she won’t have to be in for a long stay at Shriners again.
Brenda and 12-year-old daughter Carsyn came to Shriners last summer under much different circumstances. Carsyn, a soccer and basketball player, suffered a foot injury a year ago, in January 2019, and it just wasn’t healing right.
Carsyn was playing basketball and, as Brenda described it, “the whole front of her foot rolled over.” Her coach told Brenda that it didn’t look good.
When they consulted various doctors, they “got all these different answers,” Brenda said. Some thought Carsyn had hurt her tendon. Maybe it was a strain, or perhaps her growth plate had been damaged. She was in a cast six days a week and would take it off to play, managing the pain, Brenda said.
“She was six days in the boot and one day out of the boot, just because [we thought] it was a strain,” Brenda said. But her foot kept swelling up, and Carsyn told her mom, “I promise, there’s something really wrong with my foot.” By that point, Brenda was feeling pretty down about the whole situation and wondered if they would ever really find an answer or if her daughter’s foot would ever fully heal.
“You feel a little bit hopeless,” said Brenda, who herself is an athlete and also suffers from multiple sclerosis. “This problem is just going to continue to happen.”
It wasn’t until that summer Carsyn’s parents took her to Shriners, largely because Brenda said they didn’t realize the hospital handled sports injuries such as Carsyn’s.
From their entrance into the lobby, though, Brenda said she and Carsyn felt comfortable. And when she met with the doctors, she felt like they were finally getting the right answers.
Shriners sees children not just as small adults, Monasmith said, but as very different people because they are still growing. They are also more than a long-term care facility, and they take care of fractures and other surprise injuries that come up, especially for young athletes.
Brenda said the way Carsyn’s doctor interacted stood out in their experiences and that the doctor was good at explaining the injury in a way her daughter could understand without scaring her.
The doctors took an X-ray and noticed that Carsyn’s foot had been broken for a while, specifically that a part of it had broken away from the rest of the bone.
“They knew right away what the problem was,” Brenda said. “They did the least invasive process to see if the bone would reattach itself.”
The tendon, Brenda said, had wrapped itself around the broken piece of bone, which is what was causing the pain and swelling. A few weeks later, after seeing how the foot reacted, the doctors ultimately suggested surgery. Carsyn came in for the surgery on October 31 dressed as a jester. The other kids there, Brenda said, were dressed up, too.
“[The doctors] came in and talked to her about what was gonna happen. They didn’t just slap something on and scare her,” Brenda said. “Because of that experience, she won’t be afraid to go into surgery. … Something cutting skin isn’t very pleasing. It doesn’t sound like a bubble bath.”
The surgery went well. So well, in fact, that Brenda remembers the doctor storming into the waiting room with a smile on his face, expressing joy as if he were operating on his own child.
The doctor told them in detail how the surgery had gone and reported that Carsyn’s recovery would be shorter than expected: just four weeks in a boot. On December 3, Brenda said, Carsyn was back on the basketball court. “They’re just so excellent. They go way over the top to make sure you’re comfortable and welcome, and that we’re part of it,” Brenda said. “They know kids, and they listen.”
That is something Shriners takes particular pride in doing, Monasmith said, and the hospital wants care to be coordinated and seamless while giving families confidence and comfort about the situation.
Shriners treats all sorts of conditions, from sports injuries like Carsyn’s to spinal deformities like Shae’s. Shriners also provides services regardless of a patient’s family’s ability to pay. If a child is covered by private insurance or a state-funded plan, the hospital will bill accordingly, but such insurance or plans are not required to receive care. Financial donors help fill that gap.
In addition to medical services and care, Shriners has a multi-million dollar research program, with specific focuses on orthopedics, burn care, cleft lip and palate, and spinal cord injuries, according to its website, investing $38 million last year. In 2018, at its 22 locations nationwide, it treated nearly 150,000 children.
Shae knew that her visit to Shriners was only a matter of time. But as the pain grew, her family and her doctors found that this timing was right.
“We’ve known this was coming,” Shae’s mom, Debi, said.
During her first weekend at Shriners, her family came and spent Sunday with her. Shae has three older siblings and they visit as often as they can, she said.
But her cat Bailey and her two guinea pigs, Archie and Elliot, couldn’t visit, so her dad is in charge of taking care of them. Debi said she made sure he knew which guinea pig was which.
The halo around her head makes sleeping difficult, but with a neck pillow she can generally find a way to get comfortable. “The halo, it feels like when you hit your head and you have a really bad headache, and it won’t go away,” Shae said, “and then you get used to it.”
On this day, Shae was able to go without taking any medicine to manage the pain of having the halo attached to her head, Debi said.
Shae said she is hoping that after surgery—and about a year of recovery—she will be able to do some swimming and diving again. Maybe too some gymnastics, the sport she loved when she was younger.
“Right now I feel ehhh,” Shae said, shaking her head, “because I don’t like being in [the halo], because I can feel it stretching my back out, but also good at the same time because it’s stretching out my back and then it relieves all the pressure.”
Pressure and pain, she is confident, will all be gone in just a little bit longer, when the halo is gone, the rods are in her back, and her body is finally recovered, with as straight a spine as she has ever had.