Fernando “Nandito” Gallego: Spina Bifida Doesn’t Slow Down Five-Year-Old
March 2014 Issue
Fernando "Nandito" Gallego was born five years ago in San Diego,
California, with myelomening-
ocele level L4-S1-the most severe form of spina bifida, where the spinal cord and the tissues covering it protrude from an opening in the back. He was also born with hydrocephalus, a condition that often occurs with myelomeningocele. According to physicians, the prognosis for him learning to walk on his own was poor. "They said he would never walk independently," his mother, Marcia Gallego, remembers, "and not before he got stronger, maybe between ages six and eight, and at that with the assistance of a walker or crutches."
According to the Centers for Disease Control and Prevention (CDC) National Vital Statistics System, spina bifida occurs in seven out of every 10,000 births in the United States. Hispanic women have the highest incidence of giving birth to a child with spina bifida according to CDC statistics, and it is suspected that it is because they lack folic acid (folate)-a vitamin that is important for the fetus' brain and spinal cord development. That was not the case, however, for Marcia. It was a carefully planned pregnancy because she already had one miscarriage, and Marcia says she took care of herself before and during her pregnancy with Nandito and made sure that she was getting enough of all the right vitamins.
Marcia and Fernando Gallego knew their son would be born with spina bifida. They thought they were prepared. "To be honest," she says, "I was hoping that when Nandito was born that it would be less traumatic. But it was more than we expected."
Fernando uses a famous quote by boxer Mike Tyson to put things into perspective: "'Everyone has a plan until they get punched in the mouth.' That's how we felt," he says.
Nandito was born on February 12, 2009, and by the time he was discharged from Rady Children's Hospital-San Diego on April 14, he had already endured six surgeries-the first five to place a shunt in his skull had failed.
Nandito, however, knows nothing about living with many of the spina bifida-related, lifelong debilitating limitations, which can include loss of bladder and bowel control, lack of sensation, and partial or complete paralysis of his legs. His disabilities have never stopped him from doing virtually anything and everything, his mother says. Nandito plays on a t-ball team from his preschool and attends regular physical education classes during the school days, says Marcia, who adds that the exercises are harder for her son because of his disabilities. Nandito can't do everything independently, such as walking or tumbling on foam surfaces. "He tries his best in each session," Marcia says. It helps that Nandito's preschool is just a few blocks from the family's home, she says. "We started taking him in a stroller in order to save his energy for the rest of the day, but now we walk to school like our neighbors. On the way back home after school, he likes to take a break at a bus stop to drink water.
"His disposition has always allowed for us to challenge him," Marcia says, which comes in the form of Nandito's health, wellbeing, and self-esteem. "We worry about that for him just like any other parent would," she says. "The biggest difference for us is the extra care he needs every day like "cathing" [catheterization] and making sure his AFOs are on correctly before he leaves the house as well as during the day."
Fernando, who works in sales and marketing, agrees. "He likes pushing himself," he says. "He gets exhausted, but he keeps on pushing."
A Similar Path
Marcia says meeting Gregorio Paz Moreno, who is licensed in physical and rehabilitation medicine with a specialty in neurodevelopment and neonatal rehabilitation, was the best thing to happen to them in terms of her son's treatment. She first learned of Moreno through a spina bifida support group she attends in San Diego; he operates a clinic in Mexico City, Mexico, for patients with spina bifida. His past studies also include three years of chiropractic care, and he has a diploma in early stimulation; a master's degree in psychology, craniosacral formation, humanism, and Gestalt; his doctoral studies are in progress. Marcia says that she and Fernando are open to alternative therapies when it comes to getting help for their son.
Nandito's parents have been traveling to Mexico City for their son's care for more than two years now. "We are Mexicans, so it is easy for us to travel to Mexico," Marcia says. Going to Mexico for care is also easier, she says because the doctors there have more freedom than those in the United States. "In the U.S. it takes years to approve new treatments."
What attracted Nandito's parents to Moreno was his willingness to try different things as they relate to rehabilitative therapies for spina bifida. "I have met many doctors," explains Marcia, "but it has been Dr. Moreno who has made the biggest difference in our lives. He has made me realize that my son will have a normal life." Like Nandito, Moreno was born with myelomeningocele, level L4-L5. He is also a husband and father of three.
Moreno was confident he could make a difference in Nandito's life. "The first braces we observed on Fernando were forward-entry Turbo AFOs, which caused him instability and clumsy movement," Moreno wrote in an e-mail. "After analyzing his tone, movement, and posture, we changed these to rearentry AFOs." Moreno says he prescribed the change in AFOs to improve Nandito's center of gravity and to enhance load bearing muscle function, muscle contraction, and relaxation.
Moreno says the change worked. "We noticed that his rhythm and cadence while walking greatly improved...." Though Nandito still wears AFOs on both feet, he has reached a point where he can take several steps without them, according to his mother. However, his feet turn upward forcing him to put all of his weight on his ankles, and eventually he has to start crawling.
The next step was to improve Nandito's verticality, which Moreno says he did by designing the rear-entry AFOs at the mid-tibia level with a trigger point at the midfoot in order to activate the anterior tibial muscle and obtain an appropriate alternation pattern while walking. In addition to walking more upright, Nandito's feet now maintain a straighter position rather than turning inward, and there is reduced swing in his gait. His left foot used to turn in 90 degrees, often causing Nandito to trip himself, Marcia says.
Marcia also says that his legs are getting stronger through therapy, which currently includes weekly physical therapy (PT) sessions, an occupational therapy evaluation every six months and an intensive PT session in Mexico City every three months. She says this is an improvement from his earlier treatment that included regular OT sessions as well as PT. His quad strength has greatly improved and he has more balance.
Together with a noted neurosurgeon in Mexico, Moreno has been studying myelomeningocele for 13 years and has treated more than 110 patients with nearly a 90 percent success rate in biomechanical development. "We have developed a procedure that is the only one of its kind in the Americas for treating myelomeningocele," Moreno says.
In some cases, Moreno says this protocol has helped patients achieve "sufficient strength gains" to allow independent march in previously wheelchair-bound patients and better sphincter control. Improvements in their conditions such as these allow Moreno's patients to become not only more independent, but improve their self-esteem and social acceptance as well.
Nandito's parents are pleased with the rehabilitative work the physicians in Mexico have done for their son. "He has been walking independently for over a year now," Marcia says.
During the Rady Children's Hospital Shamu Walk at Sea World, San Diego, in October 2012, the family marked a milestone. "We celebrated Nandito's first complete mile without having to stop and rest," Marcia says. "He walked about half a mile by himself and then grabbed our hands for the rest of the walk when he got a little tired. The only aids he had were his AFOs."
Marcia and Fernando freely admit that having a child with spina bifida has it challenges. "You fix one thing and then he starts growing and something else appears," says Marcia, who operates her own home-based medical and dental billing business, with two full-time employees. Working is the best therapy to ease the stress that having a son with special needs can cause, she says. "I tried yoga, but it didn't work. My business gets me out and talking to people."
Being born with a medical condition or a physical limitation is not a tragedy, Marcia points out. Rather, the tragedy comes from not accepting and not adapting to get the best possible chance at life. "Living with his condition has made us stronger and better people," she says. "This has taught us to enjoy life more and not take anything for granted."
Fernando agrees. "It has been a blessing in disguise," he says. "I wish I had a tenth of [my son's] charisma."
Betta Ferrendelli is a freelance writer based in Denver, Colorado.