HKAFOs Help Spina Bifida Patient Walk
When 3-year-old Ryeland was in the APO office recently for an adjustment to his third set of HKAFOs (Hip-Knee-Ankle-Foot Orthoses), he was a little surprised to see another patient – an adult – wearing the same orthoses.
“You could see he was a little in awe to see another person wearing orthoses just like his,” said Matt Husnik, CPO, LPO, who observed the exchange.
“It was really heartwarming for me to see how surprised and interested Rye was to see someone else wearing braces like his, as he never had seen that before. I was very appreciative of this kind woman approaching us as well as showing them off like typical people show off new shoes. After all, leg braces are his normal just as some people wear eyeglasses,” related his mother, Becky. “Of course, I snapped a million pictures like any proud, excited parent as he posed with his new friend.”
Ryeland has been an APO patient since he was 8 months old when he received his first HKAFOs enabling him to be stood upright for the first time. He received his first Ankle-Foot-Orthoses (AFOs) at 13 months old, which keep his feet in a neutral position when he isn’t weight-bearing and also allow him to wear shoes. Born with the most severe form of spina bifida, myelomeningocele, he will always have the need for the support the HKAFOs provide.
Preparing for Ryeland’s Birth
Ryeland is the third of four children born to Becky and Nick of Keota and the only one with spina bifida. While spina bifida affects only a small portion of the population (about 1,300 births annually in the U.S., per the CDC), Becky was aware of the condition because her late brother was born with it. To prepare for the possibility of it for her own children, before and after conception she upped her intake of folic acid, which is said to help prevent neural cord birth defects, although there are many factors and no exact cause of spina bifida has yet been determined. Her first two children, now 8 and 5, were born healthy, as was her youngest, age 1. With Ryeland, the optional AFP blood test that Becky took with all of her pregnancies showed a high probability of him having open spina bifida; a Level 2 ultrasound at 18 weeks confirmed it.
Infants born with open spina bifida (myelomeningocele) have an open lesion on their spine and back where minor to significant damage to the exposed nerves and spinal cord has occurred. Although the spinal opening can be surgically repaired after birth – usually within 24-48 hours – the nerve damage is permanent, resulting in varying degrees of paralysis of the lower limbs as well as altered function to other body parts including the bladder and bowels.
“We wanted to know so we could prepare for it, meet with a neurosurgeon, and other medical specialists, and just get all our ducks in a row,” Becky said. “I had a scheduled C-section at 39 weeks so that the specialists and the whole neonatal team would be ready for his delivery. As soon as he was born, they checked to make sure his APGARs were OK (they were) and before they took him to the Neonatal Intensive Care Unit, they carried him to me and took a photo of us (Mom, Dad, Ryeland).
Ryeland’s lesion was from the L1 vertebrae to his tailbone or L1-S. He had closure surgery within 24 hours of birth and spent 37 days in the hospital where he had four more surgeries. Three were related to placing and revising a programmable VP shunt to drain cerebrospinal fluid from the brain and the fifth was for an unrelated condition – hydrocele. At 11 months, his shunt failed and emergency surgery was needed to replace it. Since then, he has been doing well. His speech is on track and he is on par with other children his age cognitively and socially. Only his mobility is challenged, although he has other medical conditions due to his nerve damage. He continues to be closely monitored by teachers and an array of caring specialists.
Standing with Support
At about 8 months, most children are pulling themselves up and it was important that Ryeland begin that process too. To help support his movement, Ric Volk, CO, LO, fit him with the HKAFOs at the West Burlington office. After Ryeland’s family moved to Keota to be closer to the University of Iowa Hospitals and Clinics, Ryeland became a patient of Brent Morgan, CPO, LPO, and Matt Husnik in Iowa City.
The HKAFOs stop unwanted motion of the hips, knees and ankles and provide more stability during gait. Movement with an HKAFO is achieved by a swing through or hopping type gait with the assistance of either a walker or forearm crutches and both legs are moved together as one unit. He then started therapy with a dynamic stander, which is like a standup wheelchair. The stander provides Ryeland crucial weight-bearing, position, and upright mobility, and puts him at the same level as his peers. Plus, the stander allows Ryeland to use both his hands to reach and play with toys.
“The understanding and support of giving these children ‘early’ mobility, upright position, and access is still hit and miss,” Becky said. “We are grateful to have our team at APO, his orthopedic surgeons at UIHC, physical therapists, assistive technology practioner, and all who ‘get it’ and advocate alongside us for Ryeland.
“He has strong determination to do things and that has helped a lot as well as watching his brother and sister run around the house,” Becky said. “He is determined to join them. He has progressed so he can walk all around the house with his orthoses. He is not super good with balance, so I keep close by. He moves through a lift and pull motion because his legs are locked together. He can’t move them independently right now as he is completely paralyzed from his hips down.”
Ryeland started pre-school this fall. He is in regular classes, but has an aide to make sure he has help when he needs it. “Ryeland is very excited to be with other children and learning new things,” Becky said. “He has a great attitude; he’s always smiling and happy.”