Za’Nii is only 9 years old, but she’s already been through more than most individuals would in a lifetime.
Around the time Za’Nii was 2, her mother Amber began noticing slight irregularities in the way that she walked and sat. Though Amber did bring this up on multiple occasions with Za’Nii’s primary care provider, she was told that these were minor issues that she’d outgrow in time. But still, something didn’t feel right.
“We went to multiple doctors and received a variety of diagnoses or theories about what was going on, but overall, everything kept coming back normal,” Amber says. “It’s hard as a parent to explain that you just know something is wrong, but it’s even harder when no one can tell you what to do about it.”
Eventually, Za’Nii was examined by a spine specialist in Chicago, Illinois and an MRI was performed. What was revealed was that Za’Nii had a pilocytic astrocytoma, a benign brain tumor that was applying significant pressure on her spine. Though the news was devastating it did provide some solace, as at least now there was a plan. Za’Nii began a rigorous course of chemotherapy to attempt to reduce the size of her tumor, but these treatments proved to be ineffective.
Ultimately, the only option was surgery. While the surgery to remove the majority of Za’Nii’s tumor was effective, it left her paralyzed from the waist down.
A Leap of Faith
Za’Nii's paralysis brought along with it many changes, but she handled it like she does most things: with a positive attitude.
Za'Nii transitioned to using a wheelchair and made tremendous progress in a short period of time following her surgery. Amber says that looking back on that period of time is fairly surreal, but even while things were going better, the knowledge that Za'Nii would need additional care going forward made it clear that they needed to make a change.
“I can’t lie, I don’t know how we made it through the first part of this journey. Getting past Za'Nii's surgery was step one, but the next step began when I decided to move us to Minnesota,” Amber says. “We are tremendously thankful for the care we got in Chicago that saved Za’Nii’s life, but in the years that followed we just felt like we needed more support. I had read about the outstanding medical facilities in the Twin Cities and kind of just made up my mind that Minnesota was where we needed to be. To move our family was definitely a leap of faith, but one that I’m very happy we made.”
Za’Nii Meets Gillette
While Za’Nii had put her brain tumor in the rearview mirror, she had also developed neuromuscular scoliosis and kyphosis, two spine conditions that were negatively affecting her posture and quality of life.
Upon arriving in Minnesota, Amber brought Za’Nii to Gillette Children’s to meet with spinal surgeon, Tenner Guilluame, MD, who helped Amber’s family coordinate the care Za’Nii would need going forward.
“We had tried using a brace initially, to see if it would slow the progression of the curve of Za’Nii’s spine,” Amber says. But that didn’t seem to be working well enough. Once again it seemed that surgery was the only option. We knew it wouldn’t be easy, as to prepare for the surgery, Za’Nii had to have her spine slowly straightened over the course of four weeks through Halo traction.”
Halo-Gravity Traction is a multi-stage process where surgery is performed to attach a metal ring to a child’s skull using small metal pins. Then, using a pulley system over a period of weeks, weights are applied to gradually straighten a child’s spine. This process typically lasts 1-2 months and culminates in spinal fusion surgery.
“While we were understandably nervous about the process and additional surgeries, every aspect of the care we received at Gillette up to that point made us feel confident,” Amber says. “Four weeks is a long time for your child to be largely immobilized, but the staff at Gillette and Dr. Guillaume made us feel like everything was going to be OK.”
Magec Rods and Spinal Fusion
Traditional spinal fusion surgery isn’t usually advised in children who aren’t done growing, so after Za’Nii completed Halo Traction, Guillaume performed spinal fusion surgery by attaching titanium bars known as Magec rods to Za’Nii’s spine.
The benefit of using Magec rods is that they allow the patient to continue growing while their spine is slowly straightened through incremental adjustments over time.
“I first met Za’Nii when she was about 8 years old, and right away it became clear to me that she was just this incredibly optimistic, willful kid,” Guillaume says. “One of the challenging aspects of her case was in placing the Magec rods where she would get the most benefit, but also would allow for her existing tumor to be monitored. Another aspect that is incredibly important post-surgery are the adjustment appointments that come in the months that follow. Za’Nii’s family is clearly very dedicated to her care, and it’s always a pleasure to see them in clinic.”
“After her Surgery, she was a different kid"
Following surgery, there are certain physical goals that hope to be accomplished, but some of the things that can’t always be accounted for are the other positive benefits that come along as well.
“Every bit of progress matters. It seems obvious and maybe it is, but you don’t always know how the physical health of your child can affect their mental health,” Amber says. “Za’Nii was always an outgoing kid, but I noticed a big change in her following her surgery. She could sit up straighter and communicate easier. She had a lot of friends before, but she has more now.”
Dr. Guillaume says that hearing about some of these unforeseen benefits that can result from surgery is one of the most gratifying aspects of his job.
“Obviously as a surgeon we go in with certain expectations about what we’ll be able to do and what the results will be post-surgery,” Guillaume says. “For Za’Nii, we knew that straightening her spine would improve her quality of life in a variety of ways, but to find out that it’s allowed her to be more social and engaged with those around her, it’s just fantastic to hear.”
While Za’Nii will likely continue to need care in the coming years, Amber feels as though they’ve turned a major corner after her surgery at Gillette.
“Za’Nii has had to wait for a lot of stuff to happen for her, and too long in most cases. She has had to learn how to do things in different ways than other kids, but because of that, her excitement is infectious,” Amber says. “She loves to do basically anything: Art, molding clay, going to the mall (she definitely loves shopping). I try not to treat her differently than anyone else and I encourage her two siblings to do the same. Our journey has been a long road, but it’s the one we’re on. During the pandemic, I actually wrote a book about it, and I look forward to people being able to read it soon.”
To learn more about Spine Care at Gillette Children's Specialty Healthcare, please visit our website.