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Ayden the Inspiration – Resilience and Determination Despite Trauma

Ayden the Inspiration – Resilience and Determination Despite Trauma

by | Aug 8, 2023 | Prosthetics & Orthotics

Cover story previously published in Rite Up, 2023 – Issue 2. by Kristi Shewmaker    Ayden, age 13 of Valley View, describes himself as outdoorsy. He learned to ride horses before he could walk. Every day after school, he feeds his flock of sheep that pasture next to the house his father built for the family. When his dad gets home from work, they drive across the highway to feed their horses, ponies, cows, chickens and homing pigeons. Born and raised in the country, Ayden lives with his parents Liz and Sergio and his younger sister and brother on some land they simply call home.   Ayden’s family is close-knit. His grandparents, Liz’s parents, live just across the pasture. Every Sunday, Ayden hops the fence and runs to their house where his grandma makes breakfast for everyone. After their family meal, the guys get to work doing chores around the property.
In February of 2022 while working on the farm, Ayden suffered a traumatic injury with heavy farm equipment and lost his arm. He was transported by CareFlite® to Children’s Medical Center Dallas, a Level 1 Trauma Center, where pediatric orthopedic surgeons Corey S. Gill, M.D., M.A., and Jaysson T. Brooks, M.D., performed an amputation and reconstruction of Ayden’s right arm above the elbow. “I didn’t think anything could be done to save any part of his arm,” Liz says, “but they did an amazing job, and I’m thankful for that.”

A few weeks after surgery, Ayden and his family reunited with Dr. Gill at Scottish Rite for Children Orthopedic and Sports Medicine Center in Frisco. They also met the multidisciplinary team of experts who would care for Ayden, including pediatric psychologist Emily Gale, Ph.D., prosthetist Dwight Putnam, C.P., L.P., and occupational therapist Lindsey Williams, O.T.R., C.H.T. “When you lose a limb, the family goes through a process of grief,” Dr. Gill says. “So, it’s really important for our Psychology team to work with them early on.” During his recovery, Ayden and his family toured the Prosthetics Lab at the Dallas campus to learn about the possibility of wearing a prosthetic arm and how it could be customized for him. “It was important for Ayden to know that whether he has a prosthesis or not, it does not define him,” Dr. Gill says. “He could do things with it or without it, but he was going to be great regardless.” Ayden decided to move forward with the arm. After his limb had time to heal, he would return for an evaluation with Dwight. In the meantime, Ayden began occupational therapy with Lindsey twice a week. Initially, she focused on caring for his residual limb, including massaging his scar to desensitize the limb in preparation for wearing a prosthesis. “The day I met Ayden, he was very quiet,” Lindsey says. “He was trying his best, but he didn’t yet know the potential that he had. We were just trying to get rid of his phantom limb pain, trying to cope in that way.” Phantom limb pain occurs when the brain perceives tingling and painful sensations in the limb that is no longer there. To resolve the pain, Lindsey used mirror therapy to trick his brain into thinking his right hand was there. Because Ayden lost his right arm, and he was righthanded, they also focused on dominance retraining, or training his left hand to become the dominant hand. They worked on strengthening the grip of his left hand, as well as coordination, fine motor skills and handwriting.
After the swelling subsided in Ayden’s limb, Dwight recommended a body-powered prosthetic arm. Built specifically for Ayden, the arm attaches to a prosthetic socket that fits onto his residual limb. The prosthesis is worn with a harness that loops around his left arm. The movement of his shoulder creates tension in the harness that is transferred to a cable system, which moves a terminal device in the form of a hand or a hook. Initially, Ayden chose the hand so that it would look like his fingers. The hand has a tripod grasp, meaning the first two fingers and thumb pinch together to grab objects.

For many months, Ayden worked with Lindsey on completing tasks with his left hand as well as learning how to use his prosthesis. They problem-solved daily activities, like how to get dressed, button buttons and zip zippers. In one session, he learned to tie his shoes with one hand. They also worked on two-handed tasks, like scooping ice cream, opening a sauce packet, and cutting apples and avocados.   “Ayden has grown so much,” Lindsey says. “He comes to appointments prepared with a list of things he wants to work on. Early on, he wanted to help his mom. He brought in clothes to fold and hang. He wanted to be able to take out the trash.”
After a year, Ayden decided to try the hook on the end of his prosthetic arm. He wanted to use it to feed his sheep. The pinch on a hook is stronger and can grasp heavier items. Before his injury, Ayden fed his sheep by pouring grain out of a five-gallon bucket into a trough. Lindsey taught him to use the hook to hold the handle while his left hand tilted the bucket. “Almost instantaneously after we added the hook,” Dwight says, “it has increased his abilities to do the things he used to do and contribute to his family.”

“I think he will continue to explore and find things he wants to do with his prosthesis,” Dr. Gill says. “Whether it is for things around the farm or adaptive sports, it’s our job to help him succeed in whatever he wants to do, and I think he will.”   Now, Lindsey is preparing Ayden for high school. She is teaching him one-handed typing using a Dvorak keyboard, which locates the important letters directly under your hand. They just put new stickers on the keys. “Lindsey has really been a blessing to us,” Liz says.   The best part of his care journey, Ayden says, has been getting help from Lindsey. “I’ve learned that I can still do everything the same,” he says. Liz adds that Ayden says he wants to be Dwight, and later in his life, he wants to build prosthetic limbs.
 “At Scottish Rite, they care more about the kids than anything else,” Sergio says. “They actually take care of you. They don’t care if you’re Hispanic, White, Black — whatever color you are — they treat everybody the same.”   In a recent session, Ayden and Lindsey played Jenga®. Ayden grasped a block with his hook. As he wiggled it, it looked like the tower might fall. “But, he got it out,” Lindsey says, “and when it didn’t fall, he had the biggest smile on his face.”

“Nothing is off the table for Ayden,” she says. “The injury was so traumatic for him. It could’ve defeated him, but he has just soared.”

“We can’t thank everyone at Scottish Rite enough,” Liz says. “Something that has been horrible and tragic is turning out to be something wonderful and positive for our child.”

Read the full issue.

Infants and Developmental Dysplasia of the Hip

Infants and Developmental Dysplasia of the Hip

by | Oct 7, 2021 | Research & Innovation

This article was originally published in the Pediatric Society of Greater Dallas newsletter. Committed to improving orthopedics care of pediatric patients in all settings, Scottish Rite for Children specialists are regular contributors to this publication for local pediatricians in North Texas.

Developmental dysplasia of the hip (DDH) is the most common orthopedic condition affecting newborns. The overall incidence has been estimated at approximately 1%. Dysplasia is a term that means poorly formed. It describes this condition well because one or both sides of the hip joint do not grow correctly as the child develops. In severe forms of DDH, the hip joint can be completely dislocated, meaning that there is no contact between the ball of the hip joint (femur) and the socket (acetabulum). 

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Screening for DDH
The American Academy of Pediatrics (AAP) published a clinical report on current standards for evaluating and treating DDH. With later recognition of the condition, the treatment becomes more complex and may even require surgery. In order to minimize missed cases of hip dysplasia, the AAP recommends that pediatricians periodically screen for DDH during routine office visits, from infancy until the child is walking. With effective screening, most cases are identified and managed during infancy, leading to complete correction of hip dysplasia and the development of normal hips.

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As a pediatric orthopedic surgeon, Corey S. Gill, M.D., M.A., cares for many children with DDH and has received several questions from referring providers about appropriate care. The most important things for pediatricians and other referring providers to understand about DDH include:

  • Perform a hip examination on every newborn and infant patient. Soft tissue clicks around the hip and knee are very common and do not generally indicate hip dysplasia. Similarly, asymmetric skin creases on the inner thigh do not usually mean there is a problem with the hip. Findings that are clearly abnormal and should lead to orthopedic referral include:
    • An unstable hip that “clunks” into or out of place. Hip stability is evaluated during the exam by performing the Barlow and Ortolani maneuvers. The Barlow test identifies a hip that is in place but can be easily dislocated with gentle pressure. The Ortolani test identifies a hip that is dislocated at rest, but can be placed back into the joint with positioning of the thigh.
    • Significantly decreased or asymmetric range of motion. This is especially important for abduction of the hips, which is moving the hips out to the side when lying down. Differences as small as 10 degrees compared to the normal side may indicate a significant problem.
    • A significant leg length difference, which may indicate a hip dislocation. Leg length difference is best evaluated with a Galeazzi test. This test is performed by flexing the hips to 90 degrees and checking to see if the knees are level.
    • In toddlers and older children, decreased hip abduction and a waddling gait, limp or unilateral toe walking may indicate hip dysplasia or dislocation.
  • Identify the risk factors that make hip dysplasia more likely. The two most important are family history of hip dysplasia and breech presentation (especially frank breech). Providers should have a low threshold for orthopedic referral in these patients. Other risk factors include female sex, first born child and oligohydramnios.
  • Understand the right time to refer a patient for DDH evaluation. In newborns with unstable hips on exam, a referral should be made immediately so treatment can start as soon as possible. In children with a normal exam but risk factors for DDH, an ultrasound should be obtained at approximately six weeks of age. Obtaining an ultrasound in children earlier than this often leads to a false positive diagnosis of DDH secondary to physiologic immaturity of the hip joint in the newborn.

Orthopedic Intervention

When infants do need orthopedic intervention for hip dysplasia, our first line of treatment is a Pavlik harness. This fabric and Velcro harness is generally worn for 23 hours per day for approximately six to eight weeks, but it is removable for bathing. The harness keeps the hips flexed and rotated in the correct position for normal development of the hip joint. After treatment with a Pavlik harness, we use physical exams, ultrasound and X-rays to monitor growth and confirm the hip joint is developing normally. Most infants with DDH require no further orthopedic treatment after wearing a Pavlik harness.

In some infants, especially those with severe hip dysplasia or a dislocation, Pavlik harness treatment may not be successful. Occasionally, a different type of hard plastic brace may be successful in correcting the hip dysplasia in these children. However, most children who do not respond to Pavlik harness treatment will ultimately require surgical intervention to prevent long term problems from hip dysplasia such as cartilage injury, limp, leg length difference and early arthritis. Depending on the severity of the hip dysplasia, surgical treatments may include:

  • Closed reduction – This involves repositioning the ball of the hip joint deeply into the socket when the child is asleep under anesthesia and then applying a body cast called a spica cast for a total of three to four months. During this procedure, we often inject a small amount of medical dye into the hip joint to confirm that the ball of the hip joint is appropriately positioned in the socket. This is called an arthrogram.
  • Open reduction – Sometimes the hip joint will not line up well with repositioning of the leg because there are tight tissues blocking the ball from sitting deeply in the socket. In these cases, an incision is made in front of the hip where the tight tendons, ligaments and soft tissues are moved out of the way. Afterwards, the lining of the hip joint is tightened with a strong suture to help hold the hip in position. This procedure is called a capsulorrhaphy.
  • Osteotomies – In older children (over age 1.5 – 2 years), soft tissue procedures alone are often not enough to ensure the hip joint is lined up well. In these cases, we often supplement the open reduction procedure by cutting the bone in a controlled way to help reorient the hip into the socket. This is called an osteotomy and can be performed on the ball side of the hip (femur osteotomy) or socket side of the hip (pelvic osteotomy). Metal implants are often used to hold the bone in the new position and are removed at a later date.

Conclusion

Hip dysplasia is a common orthopedic condition in newborns that can lead to significant long-term consequences if left untreated. Certain risk factors such as family history of dysplasia and frank breech presentation greatly increase the risk of developing DDH. Pediatricians play a crucial role in examining infants, identifying those with risk factors and referring them to a pediatric orthopedic specialist when appropriate. When diagnosed in the first few months of life, noninvasive treatment with a harness or brace is highly successful and generally leads to the development of a normal hip. In some cases of severe hip dysplasia/dislocation or in cases of delayed diagnosis, surgical intervention is required to improve the long term prognosis of the hip joint.

Referral Tips 

A potential diagnosis of hip dysplasia can lead to significant anxiety for new parents. Understanding the best time to refer patients and initiate treatment helps to maximize treatment success and efficiency while minimizing parental stress and worry.

  • For infants with risk factors for DDH such as family history or breech presentation but a normal physical exam, an ultrasound should be obtained around six weeks of age. Ultrasounds performed earlier than this age result in a large number of false positives and potential unnecessary treatment in a harness.
  • There is no need to obtain an ultrasound prior to referral as we work closely with experienced ultrasound technologists who can perform the diagnostic hip ultrasound on the same day as an infant’s office visit.
  • In children with a clearly abnormal exam (unstable/dislocatable hip or asymmetric hip abduction) in the nursery or in routine office visits, immediate referral should be made so that treatment in a harness can be initiated as soon as possible. In these children, there is no need to wait until the child is 6 weeks of age for referral.
  • If only abnormal exam finding is a “hip click” or asymmetric thigh crease, referral and ultrasound should be deferred until 6 weeks of age given the relatively low prevalence of DDH in these children.
  • In premature infants still in the NICU with risk factors for DDH, it is generally OK to wait for referral until after the child is discharged to go home. If an examiner finds the hip to be unstable while still an inpatient, phone consultation with a pediatric orthopedic surgeon is available to answer questions or discuss the most appropriate time to see the patient.
  • If a family has an infant diagnosed with DDH, all future siblings of the child should be referred for screening, ultrasound at six weeks of age and strong consideration should be given for referral of older siblings for a hip radiograph. First degree relatives have more than a tenfold higher risk of DDH compared to controls.