July 15, 2019 10:53 PM
(ABC 6 News) - Patients with osteogenesis imperfecta (OI) have a higher risk of breaking and fracturing bones, and two and a half-year-old Ellie Butts is no stranger to that.
ABC 6 News has followed Ellie from her infancy, as she’s learned to adapt to living life with her diagnosis of OI, commonly known as “Brittle Bone” disease. However, Ellie recently received a surgery that could change the rest of her life.
About 3 months ago, Ellie was sitting in the pediatric surgery ward at Mayo Clinic Hospital-Saint Marys campus. She’d been there many times prior, but never for a surgery as major as this one.
"She was to the point where the bone in her right leg just wasn't healing,” Ellie’s mom, Terrye Butts said. “It had broken so many times that it created a weak spot. I want to say that she may have been splinted with her leg for maybe 10-12 weeks while we were waiting for it to heal and it just did not."
Surgeons at Mayo Clinic placed four rods into Ellie’s legs near the end of April. Ellie’s parents said she would often try and sit up and play, resulting in a broken femur.
“We knew that we needed to do something,” Ellie’s dad Brian Butts said. “But we also knew it was a pretty invasive surgery as well."
On average, the surgery is expected to take a minimum of eight hours.
"My thoughts were, ‘what's going to happen to her; is that the last day that I was ever going to see her again, or should I end up saying my goodbyes?’” Ellie’s big sister Caylee Butts said. “Because I didn't know what was going to happen."
The surgery took a few hours longer due to the condition of Ellie's left femur, but ultimately ended successfully.
"I just burst out into tears of joy and it was probably the happiest moment of my life to find out that she had made it through this invasive surgery," Caylee said.
After three days of rough and at times painful days of recovery in the pediatric intensive care unit (PICU), Ellie went home to continue her healing process.
"We had to make two cuts and it's like trying to juggle three balls, instead of two,” Ellie’s surgeon Dr. Anthony Stans said.
Stans has performed many surgeries on Ellie, including the placement of her recent rods.
"A rod is a load-sharing device, so much of the work is done by her own bone, so it makes her own bone stronger, but some of the work is also done by the rod," Stans said.
The goal is to strengthen the insides of Ellie's bones, which Stans said is a similar concept to constructing a building.
"There's metal rebar inside the concrete, having a metal bar inside the bone is a simple way of thinking about it," Stans said.
He said that reduces the patient's risk of fracturing bones for a number of years.
"It's a telescoping rod, so it grows with the patient,” Stans said, “and then as Ellie grows from her growth centers, ideally this rod will move distally in the telescope in the bigger rod."
Now Ellie faces the challenge of learning to do something she's never done before.
"The goal is to get her standing, at least standing, and that's going to take a couple of extra months,” Stans said.
To do that, Ellie's caretakers will start her in a flat position on a "tilt table" while she's wearing leg braces, and gradually increase the incline over time, to strengthen her legs and muscles. And little by little she'll make her way all the way to standing straight.
It's been difficult finding someone to work with Ellie on her physical therapy portion of recovery, but the Butts family can still perform some at-home physical therapy techniques.
"The standard practices for therapy and physical therapy and rehabilitation, they’re too invasive for her,” Brian Butts said. “She's too at risk for fractures and breaks, for sure. Any program will have to be modified for her."
All of this surgery, therapy and hard work could possibly lead to an even bigger achievement for little Ellie.
“I think it's highly likely that she'll be able to walk someday,” Stans said. “It may be a while, but I think that there's a very good chance that that'll happen."
"I've kind of just put in my mind that Ellie is never going to walk, so that when she does or if she does some day, it'll be pure joy," her mother said.
It’s those tiny rods that will give Ellie endless opportunities of playtime in the future.
"It's just not the end of Ellie's journey. This is just the beginning," Terrye Butts said.
Ellie is still recovering and strengthening her legs, and has a long way to go, but her family and doctors have already started talking about placing rods in her arms as well, but Stans said that likely won't happen for a couple more years.
Created: July 15, 2019 10:53 PM
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