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Spina Bifida Won’t Slow Sophia Down!

Spina Bifida Won’t Slow Sophia Down!

by | Aug 16, 2024 | Pediatric Developmental Disabilities

“I am just like the other kids,” 11-year-old Sophia says. “I just walk and do some things differently!”

At 18 months old, Sophia was diagnosed with spina bifida. Spina bifida is a condition that occurs before birth when a child’s spinal cord is not properly formed. This condition affects other body systems, such as the bladder, bowel and mobility in Sophia’s case. “Hearing the diagnosis of spina bifida was like a gut punch,” Katherine, Sophia’s mom, said. “It was easy to feel alone and overwhelmed, but it doesn’t have to be like that.” They re-located to Dallas and discovered the resources and supportive care Scottish Rite for Children offered spina bifida patients. “After our first appointment here, I was in tears,” Katherine says. “Sophia and our family were finally getting the support we needed.”
                                                                               
Because of its complexity, spina bifida requires a collaborative care team to help each child’s individual needs. Since 2017, Sophia has experienced care from various experts in Physical and Occupational Therapy, Orthotics and Prosthetics, Urology and Neurosurgery. “I have nothing but praise for the staff here,” Katherine says. “They are always so helpful whether it was during appointments or returning phone calls.” Sophia doesn’t mind her longer appointments either. She is always looking forward to visiting her favorite Scottish Rite staff members, like physician Richard Adams M.D., or making time to have fun on the playground.
 
Sophia faces her condition with fearless determination. Before Sophia was born, there was a high possibility that she would be wheelchair-bound for her entire life. Now, Sophia is moving around with walking devices, learning new skills and adapting her condition to swimming, riding her hoverboard and cheerleading. “She has come a long way from where we started,” Katherine says. “It would be easy for her to settle, but she wants to feel like every other kid.” Since 2022, Sophia has attended Camp TLC. As a camper, she gets to explore new experiences and make friends with other children like her. It’s clear there is no obstacle that Sophia cannot overcome!

Thanks to the unwavering support from her care team and family, Sophia can navigate life with spina bifida confidently. Katherine urges other parents with similar challenges to ask plenty of questions and seek out connections. “I would be lost without the Facebook groups and the amazing parents we’ve met,” Katherine says. “Don’t isolate yourselves; this is a small but incredibly supportive community!”

Comprehensive Care With Every Step

Comprehensive Care With Every Step

by | May 1, 2024 | Pediatric Developmental Disabilities

Previously published in Rite Up, 2024 – Issue 1.

Three-year-old Marley, of Palmer, pulls up to her physical therapy appointment at Scottish Rite for Children in her self-propelled wheelchair, lovingly named Marley’s Moo. “Marley has never met a stranger,” says her mother, Christina. “Everyone becomes her friend, and her presence fills the room.”
 
When the family got the wheelchair, Christina decorated it like a cow to encourage Marley to use it. Now, she maneuvers easily, wherever she wants to go. When she is not in her wheelchair, she gets around by crawling, but in physical therapy, she is learning how to walk using a gait trainer — an assistive device similar to a walker.

Marley was born with myelomeningocele, a form of spina bifida in which a fluid-filled sac containing neural tissue protruded from her back because the neural tube in her spine did not close completely. When she was 2 days old, a surgeon closed her back, and at 2 months old, a specialist referred her to Scottish Rite for Children where she receives comprehensive care through the Spina Bifida clinic.
 
While spina bifida primarily affects the nervous system, it can also impact related body systems, such as bowel, bladder and mobility. Marley’s multidisciplinary team includes experts from Pediatric Developmental Disabilities, Orthopedics, Urology, and Physical and Occupational Therapy. “They see her from head to toe,” Christina says. “Scottish Rite has become our hub, and it’s convenient because they line up all of our appointments on one day.”

Spina bifida affects Marley’s mobility, causing developmental delay. She started crawling at age 2. Then, the family built parallel bars to help her learn to stand and walk. “She was doing great on that, but for some reason she did not want to be in her walker,” Christina says.

At Scottish Rite, physical therapist Meredith Porteous found creative ways to motivate Marley to use her gait trainer. She also recommended adjustments, providing armrest attachments to help keep Marley upright and more comfortable. “Meredith has been great with Marley,” Christina says. “She’s on her hands and knees right along with her, helping her. Marley has really come around and asks to be in her walker. It’s been a game changer.”

After moving forward in her gait trainer, Marley is learning how to turn. “Scottish Rite has been a guidepost for us every step of the way,” Christina says. “We’re really hopeful for Marley’s mobility journey. We’re ready to see her conquer the world.”

Read the full issue.

Ten Most Common Orthopedic Conditions Seen in the NICU

Ten Most Common Orthopedic Conditions Seen in the NICU

by | Jul 14, 2021 | Spotlight

Content included below was presented at the 2021 Pediatric Orthopedic Education Symposium by pediatric orthopedic surgeon Amy L. McIntosh, M.D.

Watch the full lecture or download this summary.

Newborn care, particularly in the neonatal intensive care unit (NICU) requires the consultation of many pediatric specialists. Scottish Rite for Children pediatric orthopedic surgeon Amy L. McIntosh, M.D., frequently consults in the NICU, and in a lecture for pediatricians and other health care providers, she summarized the ten most common conditions she evaluates in newborns.

Pseudoparalysis
A baby with pseudoparalysis typically presents with one arm laying or hanging limply. In many cases, the hand of the affected limb moves normally and the baby can successfully grasp and release the fingers and thumb.

A mechanical injury, typically during birth, causes the apparent paralysis. These factors may contribute to pseudoparalysis:

  • Vaginal delivery
  • Large baby
    • Delivery converted from vaginal to C-section due to the size of the baby
  • Maternal diabetes
  • Forceps-assisted delivery

The most common causes for pseudoparalysis are:

Fracture to the clavicle or humerus
Though alarming to the parents, these causes of pseudoparalysis typically have excellent outcomes. Treatment is focused on immobilizing the arm and keeping the child comfortable, and follow-up care is minimal. In fact, repeating X-rays in follow-up is unnecessary and not recommended.

The treatment instructions are simple. Put the baby in a long-sleeved onesie and safety pin the sleeve to the torso of the onesie for two weeks. This is the easiest way to immobilize the arm. Tylenol may be given to the baby for any pain.

Injury to the Brachial Plexus
The brachial plexus provides motor control in the arm and fingers. Stretching or tearing of a portion of these nerves can cause true paralysis. The child’s wrist and fingers are held in flexion, and there is no active extension with them. When diagnosed, a pediatric hand specialist will often recommend occupational therapy to teach the parents arm, wrist and finger exercises. Observation for nerve recovery and continued care with a pediatric orthopedic hand/upper extremity specialist is highly recommended.

Developmental Dysplasia of the Hip (DDH)
Developmental dysplasia of the hip (DDH) is an orthopedic condition in which the hip joint is unstable or has a shallow socket. There are several risk factors to consider at the beginning of the consultation including:

  • Firstborn
  • Female
  • Family history of hip dysplasia
  • Breech delivery
  • Significantly low amount of amniotic fluid

During the exam, a Barlow maneuver will replicate the hip dislocation, and an Ortolani maneuver moves the femoral head back into the socket. To visualize the condition of the joint surfaces and shape, ultrasound is used to aid in treatment planning. The treatment for DDH is to position the hips in a “frog leg” posture for 23 hours / day using a Pavlik harness for a period of 6-12 weeks. The earlier treatment begins, the better the outcome. Though treatment is typically successful, annual observation by the pediatric orthopedic specialist is recommended until the patient is 18 years old.

Clubfoot
Clubfoot is a congenital disorder in which the foot is severely turned inward and pointed downward. Clubfoot is often associated with other syndromes, including arthrogryposis and amniotic band syndrome. The majority of clubfeet are easily seen on the prenatal ultrasound that is done at 20-26 weeks gestation. During the prenatal consult, Scottish Rite pediatric orthopedic surgeons explain what clubfoot is and its treatment. The Ponseti method is a series of weekly casts that gently move the foot into the correct position. If the baby is going to be in the NICU for six weeks or more, the entire Ponseti method can be completed in the NICU. Otherwise, treatment can begin after discharge from the NICU.

Amniotic band syndrome (Streeter’s dysplasia)
Amniotic band syndrome is a condition where amniotic bands formed in utero constrict fingers, limbs and other body parts. When clubfoot is related to amniotic band syndrome, it is called Streeter’s dysplasia. Sometimes the constriction from amniotic bands requires the limb to be amputated. To establish a relationship and initiate a prosthetic tolerance program and plan, the pediatric orthopedist collaborates with pediatric prosthetists. At a developmentally appropriate time, a custom prosthesis is created to assist the child in meeting normal developmental milestones on time.

NOT Amniotic band syndrome or compartment syndrome –> Limb Ischemia with dry gangrene and auto-amputation
In extremely rare occasions when intrauterine fetoscopic laser surgery is done to treat twin-to-twin transfusion syndrome (TTTS), a loss of blood supply to the developing extremities may cause ischemia and necrosis of a limb or limbs. In these cases, a pediatric orthopedic surgeon monitors and supports efforts to prevent infection while awaiting an autoamputation to occur. Establishing an early connection with a pediatric prosthetist ensures timely training and care to protect normal developmental progression.

Polydactyly / Syndactyly
Polydactyly is a hereditary condition that causes supernumerary (excess) fingers and/or toes, typically on the medial or lateral side. Syndactyly is a condition that causes two or more digits to be fused together. With preaxial polydactyly, the thumb or great toe (first digit, or medial-sided) is duplicated, which can be associated with tibial dysplasia or a tibial hemimelia. It is important to get X-rays of the tibia, fibula and foot to fully assess for tibial dysplasia. With postaxial polydactyly, the fifth, most lateral digit is duplicated. Postaxial polydactyly is never associated with tibial hemimelia, and it is much easier to treat surgically. Surgery is typically offered at 6 months of age or greater. Referral to a pediatric orthopedic surgeon for a thorough evaluation and discussion of treatment considerations is highly recommended.

Congenital knee dislocation
Congenital knee dislocation (CKD) is often associated with other syndromes, so a genetic consult is indicated. These babies are usually born Frank breech, and some may have required a Cesarean delivery. The knee or knees present in a hyperextended position. Ultrasound should be used to rule out hip dislocations, since the knee and hip are often both affected. CKD is treated with serial casting. A series of long leg plaster casts will slowly reduce the knee joint into a more normal position. Once the knee can be flexed to 90 degrees, a Pavlik harness is used to maintain knee flexion. Treatment can be completed during the NICU stay or as outpatient procedures after discharge.

Calcaneovalgus foot
Unlike a clubfoot, with a calcaneovalgus foot, the calcaneus is dramatically everted and flexed, sometimes the top of the foot is almost touching the tibia. This condition is usually caused by intrauterine positioning. With appropriate stretching, the foot position gradually improves in the first 4 to 6 weeks of life.

There is an association between calcaneovalgus feet and posteromedial bowing of the tibia. When an X-ray of the tibia reveals or confirms a posteromedial bow, the child is very likely to have a leg length discrepancy of 2-5 centimeters. These children should be referred to a pediatric orthopedic specialist with experience in limb reconstruction to monitor, and if needed, address the leg length discrepancy caused by the tibia bowing prior to skeletal maturity.

Spinal dysraphism
Spinal dysraphism is a reference to congenital abnormalities in the vertebrae, spinal cord and/or nerve roots. These signs are commonly associated with underlying spinal abnormality:

  • Hairy patch on the midline of the back
  • Central, sacral dimple
  • Abnormal fat distribution in the lumbosacral area

These cutaneous manifestations are all significant hints that the underlying spinal cord or vertebrae did not form normally. An MRI of the spine is required to determine the exact nature of the spinal dysraphism. Possible definitive diagnoses include tethered cord, abnormal development of the spinal cord, lipomeningocele or spina bifida. Referral to a pediatric orthopedic specialist with experience in neurological and spine conditions is highly recommended. The child will need ongoing evaluation and intervention to maximize function with spine and limb deformities with growth.

Addressing positioning, postural and orthopedic concerns may not be a top priority in the early days, but consulting a pediatric orthopedic specialist should be considered as soon as the need is identified. A collaborative approach to prioritizing care with treatment plans and accurate information is beneficial for treatment outcomes and reassuring to the family.

Share Your Story: Dancing Queen

Share Your Story: Dancing Queen

by | Jul 19, 2019 | Pediatric Developmental Disabilities

Meet Leigha, a patient who is treated by the experts in our Pediatric Developmental Disabilities department. Learn more about her journey below.

Blog written by Leigha’s mother, Anjanette, of Rowlett. 

Leigha is a 12-year-old dancer that lives with spina bifida. At birth, she had a large tumor that had attached itself to her spinal cord and tethered it, causing nerve damage and multiple complications. When she was 3 months old, doctors decided to operate on her spine to untether the spinal cord. This started years of surgeries for Leigha.

We discovered Texas Scottish Rite Hospital for Children when she was about 9 months old. Our family feels blessed and thankful for the constant care, support and education we have and still receive from all the doctors and nurses. Through the years, Leigha has had numerous procedures. She has been taking multiple medications since she was 3 and lives with chronic pain and other complications.

Leigha’s story is not simply about her condition, but rather a story of triumph, hard work and determination.

Leigha is an inspiration to many and our family’s “Dancing Queen.” At the age of 6, Leigha decided that she no longer wanted to do her special needs cheer team and asked to dance at her sister’s dance studio, Beyond Belief Dance Company. Initially, we were apprehensive because this dance studio is very competitive and holds the dancers to high standards. In spite of our misgivings and doubts, we enrolled her in the new studio. Soon after, Leigha had to have another spinal surgery and we thought this may put a stop to her dancing, but we were proven wrong. Unbeknownst to myself and our family, a dance team jacket and costume had been ordered for Leigha and she was a part of her first competitive dance team! Since then, she has never looked back.

With the support of Scottish Rite Hospital, her dance instructors and her sister Kiana, Leigha now dances with the best of the best! She has lead team dances, won first place with high honors with her solos, received convention scholarships and has been a featured dancer on the Netflix original show, “Dancing Queen.” Leigha’s success is largely due to the amazing and thorough care she receives from the hospital.

We are eternally grateful to Dr. Adams. The team at Scottish Rite Hospital has given our family hope when we were scared. They are thorough with every aspect of her care and took the time to educate us as parents on how to best care for her at home. Leigha also has the confidence to take care of herself and can meet any challenge that comes her way.

Leigha has been able to attend spina bifida camp, which has been a life changer because she realizes she isn’t alone. There are not enough hours in the day for us to give praises to Scottish Rite Hospital. From the bottom of our hearts, we are thankful and appreciative.
 

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

FOX 4: Benjamin Waggoner shares his Eagle Scout journey

FOX 4: Benjamin Waggoner shares his Eagle Scout journey

by | Nov 1, 2018 | Press Coverage, Scoliosis & Spine

Read the original story on Fox 4’s website here.
 

This week was a big one for FOX 4 traffic reporter Chip Waggoner and his family. His son became an Eagle Scout. But it wasn’t easy for him to earn the prestigious title.

Benjamin Waggoner said he’s waited for years to be named an Eagle Scout.

“I’ve been through a lot in my life. I think few would expect to see something like this in existence… a kidin a wheelchair an Eagle Scout,” he said.

Benjamin’s mom and dad were right by his side as he earned the award, just like they’ve always been.

“He’s inspiring. I know, I’m dad. I’m biased. But he’s an exquisite light, unbelievably unique and when he comes into a room, he lights it up,” Chip said.

It’s been a long journey for the Waggoner family. Before Benjamin was born, Chip’s wife Wendy learned the baby boy she was carrying wasn’t developing as planned. Some people suggested she terminate the pregnancy.

“I remember thinking for 1/10th of one second, yes this is what we should do. And it’s like, wait a minute. Who’s in control here? God’s in control. God said he’s going to strengthen us and help us, uphold us with his righteous right hand. He’s going to take something, in control of everything. And if he’s in control of everything, he’s got a plan. And I have to trust that plan,” Chip said.

“It was our first child so we didn’t really know. It was our normal. But it was kinda scary because we haven’t had anyone in either one of our families that have had any kind of challenges like that,” Wendy said.

Even with all the worry, Benjamin’s birth was a beautiful moment.

“We did get to have a brief moment with him, hold him as best we could given the circumstances,” Chip said.

Benjamin was then immediately brought into surgery, the first of about 20 that he’s had in his lifetime.

He was born with a rare form of spina bifida. His spinal column is also tethered, causing him limited sensation in his lower body.

But he has exceeded his doctors’ expectations time and time again. In his world, if he faces a challenge, he figures out a way to conquer it.

That’s how he approached the requirements for his Eagle Scout award. For his Eagle project, he raised the funds and built a nine-hole Frisbee golf course at Camp John Mark, a camp that specializes in helping children with unique medical and physical challenges.

Chip has been a part of the FOX 4 family warning viewers about traffic trouble spots for 22 years. He has spent many nights on hospital cots, working split shifts at FOX 4 with little or no sleep. Still, he often has a smile on his face.

When meeting Benjamin, it’s easy to see his sweet, silly side, just like his dad. The two often turn to laughter to get through all the challenges of life.

“The scout motto being prepared is the biggest thing I’ve learned from scouting because it has applied to my life so much,” Benjamin said.

“He deserves every bit of this celebration. He is so worthy of being marked for this distinction and I can’t wait to see who he gets to inspire next,” Chip said.

The Waggoners are reminding people that life is a miracle and some moments are so so precious.