By Maureen Gilmer, Riley Children’s Health senior writer, firstname.lastname@example.org
Selena VillaGomez-Diaz is nonverbal, but that doesn’t mean she can’t communicate.
The 5-year-old, born with a chromosomal abnormality and severe scoliosis (abnormal curvature of the spine), smiles, laughs, cries and points to get her message across. And her parents, Angel and Jessica, read her well.
“She’s a little diva,” her dad said with a laugh.
In fact, she appears to have them wrapped around her little finger as they check out a glowing lamp, a puzzle and an aquarium in the radiology department at the Riley Outpatient Center.
The family (big brother Alexander is in school) is back at Riley for a follow-up appointment with Selena’s spine surgeon, Dr. Tyler Christman.
They want to know how her spine is healing and straightening and what to expect next in her treatment.
In July, Dr. Christman implanted growing rods in Selena’s spine to address her worsening kyphoscoliosis, an aggressive form of the disorder that can compromise organ function if not addressed.
While recovering at home, she was required to wear a supportive brace to prevent her from bending or twisting to a degree that would interfere with healing.
The good news, Dr. Christman said as he reviewed her new X-rays last week, is that she can stop wearing the brace, now that she is more than 10 weeks out of surgery.
Even better, her X-rays show much improvement, he told the family after he examined Selena’s back. Prior to the growing rod surgery, the kyphosis curve was 95 degrees, and now it is 44 degrees.
“She is sitting up a lot straighter. That’s going to let her be a lot more interactive and alert, and also help with standing because she’s not leaning forward anymore,” Dr. Christman said.
A normal spine curvature is 20 to 50 degrees. A curve greater than 50 degrees indicates kyphosis and causes individuals to appear hunched over.
That hunch is what Angel Diaz first noticed when his daughter was about 2 months old, he said.
“She was leaning to one side all the time, even when she lay down or when we picked her up,” he said. “She was always slouched over to one side.”
As a result of that and developmental delays, the kindergartner is not walking yet, but her parents have high hopes for her.
“She is really energetic since the surgery,” her mom said.
“At first, she didn’t want to move too much, but she is getting used to the rod in her back,” her dad agreed. “Hopefully, she’ll be more confident in walking and standing by herself. Before, she felt off-balance,” he said. “Now, she stands up for a bit and tries to walk from one end of the couch to the other.”
While casting can be a particularly effective treatment for infantile scoliosis, eventually patients age out of that option, Dr. Christman explained. The spine becomes more rigid and less amenable to casting as children get older. Those children graduate to a brace, and some, like Selena, need to have growing rods.
Next up in her treatment in about a month is the first attempt to lengthen the MAGEC (Magnetic Expansion Control) rod in her spine, which will take place in the ortho clinic at Riley. It’s an outpatient procedure, where a magnetic device will be placed on her back to slowly expand the rod – in this case by a fraction of an inch.
“We will start very small – 3 millimeters, getting X-rays before and after,” Dr. Christman said. “The rod itself will only lengthen to the point it’s safe to do so. We will attempt 3 millimeters, but we may get 2.”
The growing rod expansion is a bridging technique to allow the spine to be controlled and supported while the patient continues to grow, he explained. Eventually, a more permanent fusion surgery is done.
Selena, who weighed just under 28 pounds when she had the rod implanted, is up to 32 pounds now. She relies on a feeding tube to get more calories, but she is able to take some food by mouth.
“She’s a tough little cookie,” Angel Diaz said, as he got down on the floor with her to play. “She scoots around and annoys her brother and plays with the dog. She bounced back pretty quickly.”
And as long as she is happy, he is happy.
“I just want to know she is doing well and that this is working.”
As they got up to leave the clinic last week, Dr. Christman had one last thing to say: “Thanks for trusting me to be her doctor.”
“Growing rods” can help straighten tiny patient’s spine - Five-year-old Selena has severe scoliosis, but the Riley ortho team is working to correct the “extreme curve” that threatens her health.