A child born with severe spina bifida has new mobility and new possibilities
In home videos, Brody Moreland is a blur of motion as he chases toys around his family’s Missouri living room. Yes, he’s aboard a brightly colored scooter contraption and can’t walk, but he’s nevertheless fully mobile, and constantly underfoot. For the first six months of his life, however, Brody barely moved. He was born with a severe case of spina bifida (SB), a congenital malformation of the neural tube that affects 1,500 infants a year in the U.S.
Brody’s amazing transformation is due to the dogged determination and skill of a physical therapist, Gerti Motavalli; to the parents’ intense commitment to helping their son; and to the application of a spinal electrical stimulation technique not previously used on SB patients. Although Brody still has a long way to go, it worked, and that success holds out hope for other children born with SB who can get early intervention.
Gerti is my sister-in-law, married to my brother, Peter, a professor at the University of Missouri in Columbia. She’s German, and was trained there, which meant getting retrained in the U.S. Since their move to Missouri — from Guam! — I’ve watched her growing dedication to her patients, most of whom were born with major challenges. Brody’s is one story among many.
Brody’s birth story
Could Brody ever walk? Gerti says it’s possible, especially with likely advances in medicine during his lifetime. Brody was born in Centralia, Missouri in 2017, to middle-class Catholic parents, Taylor and Ally Moreland, both in their 20s, and both very dedicated to making their son’s life as rich as it could possibly be. After a 20-week ultrasound, they knew that Brody would be born with SB.
Spina bifida occurs in one of 1,000 births worldwide. John Cougar Mellencamp was born with spina bifida, and so was country singer Hank Williams and artist Frida Kahlo. Newswoman Judy Woodruff’s son was born with a severe case. The techniques for detecting SB have advanced considerably since those celebrities were born.
Studies have shown that taking folic acid supplements can prevent spina bifida from developing. Ally Moreland took folic acid during her pregnancy, but that’s no guarantee — in half of all cases it doesn’t absorb or successfully reduce incidences of SB. That appears to be what happened with Brody.
In-vitro surgery at 24 weeks can close the spinal cord protrusion to reduce the severity of the SB, but surgeons are very selective in determining which patients qualify due to risk of premature birth, or even death. At this point in Moreland’s pregnancy, Brody was not a good candidate because the doctors’ consensus was that his level was so mild that the benefits did not outweigh the risks.
But Brody was born full-term via C-section, and his condition was not mild. Brody had an additional deformity in his upper spinal cord that the doctors had missed and it resulted in him being basically paralyzed from his ribcage down. After his birth, doctors discovered Brody’s spinal atrophy was severe: Instead of seven millimeters in diameter, his upper thoracic cord was two — it tapered off into a thin ribbon.
Brody’s early progress
The Morelands were and are very devoted to Brody’s care, but he made little progress in his first six months. Brody had absolutely no sensation below the chest. He did not respond to touch, pinpricks or ice placed anywhere in his legs or lower trunk. His lower back, abdominals and legs were flaccid, showing no movements or muscle tension. Only 43% of SB patients are ever able to get up off the floor, stand upright and walk. And being so restricted in movement, often requiring a wheelchair, is a cause of long-term complications, including weight gain and acquired deformities.
At six months, when Gerti first saw him, Brody’s trunk muscles were so weak and paralyzed that he had difficulty holding his head steady when carried. It was impossible for him to hold his trunk erect when his parents supported him in sitting.
Functional electrical stimulation (FES) is often used for people who have suffered spinal cord injuries and SB. Typically, two electrodes are placed on a muscle and the electrical impulses contract the muscle — to stimulate them to work again. This approach is often used to strengthen muscles and, in SB, is thought to also strengthen the connections between the nerves and muscles.
FES, developed in the U.S. during the 1960s, was initially applied to stroke patients. It was first used in the U.K. on people with spinal cord injuries in the 1980s, and it was adopted for use in treating multiple sclerosis in the 1990s. Today’s battery-powered FES devices are about the size of a pack of cards.
Gerti began using FES on Brody when he was six months old, however there were only muscle contractions during electrical stimulation and no spontaneous movements in Brody’s legs, even after a month of intensive electrotherapy on all his leg and trunk muscles. She contacted Dr. Gad Alon, a Ph.D. retired from the University of Maryland and an internationally renowned specialist in the use of electrical stimulation.
Together they developed a protocol to place the electrodes directly over Brody’s spine instead of on the muscles. “We had nothing to lose and knew it couldn’t damage his spine,” Gerti said. “If it didn’t work, we’d just get no response.” But they did get a response.
A breakthrough treatment
At first, Gerti said, only small movements were seen in Brody’s ankles during spinal stimulation where electrodes were placed over the spine of his lower back and the bottoms of his feet. But soon the muscle contractions got stronger and his knees and hips moved as well. “Muscle contractures got so strong we had to reduce the intensity,” Gerti said. The Morelands implement the spinal stimulation an hour each day at home.
Motavalli knew they had developed something very special when Brody started to move his legs spontaneously without any electrodes attached. Over the past 15 months, Brody started to develop feeling in his legs and trunk and now when touched with an ice cube, pin prick or pressure in different areas of his legs he shows a definite response.
“Brody definitely hasn’t reached the level he can achieve, we see progress each week” Motavalli said. “He’s gotten a lot of strength in his trunk. He can sit up straight, holding on with one hand and using the other to play with his toys.”
And Brody is mobile. Using a tilting wheeled device built by his father, called “The Frog,” he is able to scoot around the house, play with the cat, get into mischief and interact with other kids. The Morelands describe what a difference it has made in Brody’s life:
“After numerous late nights and trial and error testing, we created the first Frog. This was a truly life changing time for Brody. Before The Frog, Brody was stuck on the floor wherever we put him, and he had a very hard time playing with most of his toys. After he started using The Frog, he was able to roam around the house, chase the cat, play with toys and do everything that any crawling baby could do. For the first time he was able to truly explore his world.”
That new mental stimulation has led to greatly improved cognitive ability, his family says. The Morelands are now creating more of these devices so that children like Brody can experience mobility in a new way.
Brody was the first baby with SB in the world where this spinal stimulation protocol was used. Due to the great success, Motavalli wants to see the spinal stimulation protocol used more widely for SB patients, and she and Alon co-authored a paper that was published in the scholarly publication Child Neurology Open. And Motavalli reports that Brody can now extend his hips in kneeling. “Those are the first voluntary movements we see in his legs,” she said.
From the journal article:
Prior to initiation of electrical stimulation treatment at age six months, the infant exhibited complete loss of sensation below the level of T8 and muscular paralysis below the level of T10. The unexpected emergence of somato-sensory responses and spontaneous movements in the trunk and lower extremities are described, focusing on the electrical stimulation protocols. Spinal cord electrical stimulation protocols were not previously described in the medical literature regarding the management of children with spina bifida.
Now nearly 2 years old, Brody is now a curious, active and — most importantly — mobile little boy.
A child born with severe spina bifida has new mobility and new possibilities
Today, Brody Moreland is a blur of motion as he chases toys. But for the first 6 months of his life, he barely moved. He was born with severe spina bifida.