A Long Journey Ahead
Guada, as she’s affectionately called, and her twin sister were born early at 30 weeks in their hometown of Mexico City. It wasn’t long before her parents, Andres and Lola, noticed something was wrong. Shortly after birth, Guada was diagnosed with severe congenital scoliosis, a condition that causes the spine to curve abnormally. Her first two months of life were spent in intensive care.
“When Guada began sitting and standing, we noticed right away that her condition was getting worse,” recalls Andres. “We knew we had to find help.”
Lola and Andres faced challenges finding the right care for Guada’s complex form of scoliosis. Many experts they consulted told them that her case required specialized care that wasn’t available in Mexico—and that they had to act fast.
When it comes to scoliosis, early intervention is key, as surgery is often recommended while a child is still growing. Surgeons use special rods that can be adjusted and lengthened as the child grows, preventing the spinal curve from worsening. If left untreated, scoliosis can lead to serious health problems, including chronic pain, respiratory problems, organ and nerve damage and arthritis; it could even cut Guada’s young life short.
Lola and Andres began researching treatment options north of the border. All signs pointed them to one place: Rady Children’s. As a top-ranked children’s hospital, Rady Children’s attracts patients from around the world seeking specialized treatment.
“It felt like fate,” says Lola. “We knew Rady Children’s was where Guada needed to be.”
Their search led them to Peter Newton, MD, chief of the Division of Orthopedics and Scoliosis at Rady Children’s, the Hospital’s surgeon-in-chief and a clinical professor at UC San Diego School of Medicine. Dr. Newton is an internationally recognized leader in pediatric spinal conditions.
Rady Children’s Orthopedic Center for Spinal Disorders routinely sees patients from around the world who travel to San Diego for treatment of adolescent idiopathic scoliosis, neuromuscular scoliosis, congenital scoliosis and failed prior surgeries.
“Rady Children’s orthopedic program is truly top tier because we’re committed to pushing the boundaries of pediatric orthopedic care by taking on the most complex cases, like Guada,” says Dr. Newton. “Our team of experts is dedicated to not only treating individual patients, but also driving innovation to improve outcomes for all children.”
The Road to Rady Children’s
Guada’s journey at Rady Children’s began with her first visit to Dr. Newton.
“We were nervous, but Dr. Newton was honest about how complex her case was. He was also optimistic that with the right care, Guada could have a normal, healthy life,” Andres recalls.
Dr. Newton laid out a treatment plan that involved multiple surgeries to correct her scoliosis, including halo traction—which straightens the spine using a halo-like device—and the placement of growing rods in her spine. The process would be arduous and would take several years.
“Guadalupe has a severe form of congenital scoliosis. Her vertebra didn’t form properly in utero, and it caused her spine to be curved and not programmed to grow normally over time,” says Dr. Newton. “Her situation was particularly complex because she had multiple levels of congenital anomalies, which together created a challenging circumstance for the more than a decade of growth she had remaining.”
Guada’s first surgery involved removing some of the abnormally shaped vertebra and fusing together two segments of her spine—one in the upper chest area and one in her lower back—that would ultimately form the foundation for growing rod constructs. The hope was to remove one of the barriers to growth, knowing that she would still require many more procedures down the line.
The family had been flying to San Diego for each of Guada’s treatments, but with so many surgeries on the horizon, they had a tough decision to make: Would they travel to San Diego for each of Guada’s appointments or would they move here permanently?
“It made sense for the family to come here and to start treatment,” says Andres. “We thought of it like registering for a marathon. We had to plan for the next 15 years at least.”
Moving from Mexico City to San Diego for Guada’s treatment wasn’t easy for Lola and Andres. They had to navigate new systems, manage financial pressures and spend long periods of time away from their home and family. Yet, they never wavered in their commitment to Guada’s health.
“We were in it together, as a family,” says Andres.
The journey also forced the family to lean on each other. Guada’s twin and younger sisters have been a constant source of support, and the family has grown stronger through the experience.
“It hasn’t always been easy, but it’s brought us closer,” says Lola. “We’ve learned to be patient, to be strong and to find joy in the simple moments.”
Straightening the Curve
Guided by 3D modeling created in the Rady Children’s Helen and Will Webster Foundation 3D Innovations Lab, Dr. Newton implanted one expandable growing rod into Guada’s back to gradually reshape her spine as she grew, then added a second one when she got a little bigger.
Growing rods are an alternative to spinal fusion procedures that can stunt a child’s growth. The metal rods are attached above and below the abnormal curve of the spine and are lengthened via surgery or, more commonly, using a magnet.
“Growing rods have been around for some time. In the beginning we surgically lengthened those rods every six months,” says Dr. Newton. “But growing rod technology has become more sophisticated, and we are now able to insert rods that can be lengthened using a magnet—spinning a magnet outside the body turns the motor inside the body and causes the rod to lengthen.
“Guada has magnetic rods, so she doesn’t need surgery as frequently as a result,” he continues. “When she maximizes her growth and we’ve got all the length that her spine can give us, she’ll need a final surgery to remove those rods and do a final fusion. But she’s been tolerating these rods really well, and continues to live a happy, active life, dancing and enjoying herself and entertaining all of us.”
Recovery On Point
Guada’s surgeries were difficult and the recovery periods long, but through it all, she showed incredible resilience.
“She’s been through so much, but she never lets it define her,” says Lola. “She’s always smiling, always dancing.”
Dance has been a constant in Guada’s medical journey. Her family takes comfort in knowing that the exercises she does in her daily classes at her Rancho Santa Fe studio both strengthen and stretch her muscles and give her an outlet for self-expression and a welcome distraction from her treatments. Dance styles like ballet can help with elongation, core strength and stability, which can help maintain spinal health.
Guada also has a special bond with her ballet teacher, Robyn Shifren, a former principal ballerina who sustained a broken back and spinal cord damage in a car accident.
“Guada’s driven—I think it’s what gets her out of bed. It’s very much a dancer’s kind of mindset. But I let her take the lead and let me know where I can push her,” says Robyn.
With Robyn’s guidance, Guada and her fellow students will compete in a prestigious international dance competition later this year. Though Guada cannot arch her back or bend to the sides, the determined preteen can dance the routine with no modifications.
For Lola and Andres, seeing Guada able to enjoy herself and dance alongside her two sisters makes them appreciate their many blessings.
“Guada loves dancing. She loves ballet. She also plays piano. She plays tennis. And she has many friends. She has been through many experiences, and she’s like a bright star,” says Lola. “We have more joyful moments than painful moments, and I think that maybe after tough moments, you appreciate the good moments more.”
A Message of Hope
“It may seem overwhelming at first, but take it one step at a time. Trust your doctors, commit to the process, and remember that you’re not alone. There is hope, and there is help.”
Andres says the most challenging part of the journey has been the uncertainty about whether the treatments Guada underwent would work. But the family had faith in Dr. Newton and the care she was receiving at Rady Children’s.
“It’s a human thing to try to control everything around you, but when you have a child with this kind of condition, it really makes you trust the process, trust your doctors and let go,” he says.
For families facing similar challenges, Lola and Andres offer words of encouragement.
“It may seem overwhelming at first, but take it one step at a time,” says Andres. “Trust your doctors, commit to the process and remember that you’re not alone. There is hope, and there is help.”
Guada’s journey is a testament to the power of resilience, the strength of family and the life-changing care provided by Rady Children’s. Through every challenge, she has faced her condition with grace and courage.
For Lola and Andres, one of the biggest blessings has been the care they’ve received at Rady Children’s, from the doctors and nurses to the Healing Arts program musicians and the canine therapy dogs. Their experiences at Rady Children’s have been filled with small moments of kindness and support that have made a lasting impact.
“The doctors, nurses and staff went above and beyond to make sure we were supported, both medically and emotionally,” says Andres. “From the moment we walked through those doors, we felt at peace.”
“We spent many nights in the hospital, and it felt like time stood still,” Lola adds. “But the staff always made us feel like we weren’t alone. They became our family.”
Today, Guada continues to thrive. She’s dancing and living her life to the fullest. While her medical journey is ongoing, the progress she’s made has been extraordinary.
“We are so grateful to Dr. Newton and everyone at Rady Children’s,” says Lola. “Without them, we wouldn’t be where we are today.”
