Nico is Spreading His Wings!

Nico is Spreading His Wings!

3-year-old Nico, of Mission, and his family travel more than 500 miles to receive treatment at Scottish Rite for Children. “We make that effort to come this far, because it’s worth our drive,” Nico’s mom, Mary says. Nico was diagnosed at birth with clubfoot and arthrogryposis — a rare condition that causes stiff joints. Mary found comfort in the arthrogryposis support groups she found online. Her conversations with other families led her to schedule an appointment for Nico at Scottish Rite.

Nico receives care from our experts in hand, clubfoot, occupational therapy and orthotics. Even when he’s facing a challenge, Nico’s joyful personality shines. He is always greeting and waving at everyone he meets at Scottish Rite. “I think Nico is going to grow up to be an entertainer,” Mary says. “He is such a social butterfly!” 
When surgery was proposed as part of Nico’s treatment plan, Mary felt assured. “We were always confident about surgery,” Mary says. “The outcomes our care team told us were always what we received.” Nico has had two surgeries to combat his arthrogryposis: an Achilles lengthening surgery on both legs in 2022 and a wrist surgery in 2023. 

Nico has made remarkable progress, and there is no stopping him now! Mary says she is thankful to Dr. Scott Oishi and Dr. Anthony Riccio for their attentive care. With their help, Nico can now walk by himself. He’s also working with occupational therapists Amy Sitabkhan and Grace Evansco to develop more independence by learning daily tasks such as eating and clothing himself. “I wish I could take Scottish Rite’s occupational therapists back home with us,” Mary says. “Everyone is so helpful, and we are so blessed.”

We like to say all our patients become part of the Scottish Rite family. For Nico, this is especially true. He and his family are now part of our Hand in Hand support group, and it’s been so fun to watch Nico come out of his shell. We look forward to seeing everything he accomplishes in the future!

 

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Prenatal Care for Clubfoot – What Expecting Moms Need to Know

Prenatal Care for Clubfoot – What Expecting Moms Need to Know

Discovering that your unborn child appears to have a physical difference during an ultrasound can be scary. The news is often unexpected and can lead to thousands of questions about how it will affect your baby. One thing that is commonly identified during the anatomy ultrasound scans is clubfoot, a condition that causes one or both feet to turn inward and downward. While the condition does require treatment, it often can be corrected without surgical intervention.

Our team in the Center for Excellence in Foot led by Anthony I. Riccio, M.D., meets with parents whose babies are diagnosed with clubfoot prenatally and begins treating these children quickly after they are born, beginning interventions within one to two weeks of birth. Learn more about what to expect during the clubfoot treatment process below.

What is clubfoot?

Clubfoot is a congenital (from birth) disorder in which the foot points down instead of straight and turns in, pointing toward the opposite leg. Clubfoot is one of the most common pediatric musculoskeletal conditions that requires treatment by a pediatric orthopedic surgeon.

A clubfoot is not a normal foot that is just twisted and turned into an abnormal position. The outward deformity is created by structural differences inside the foot. The method of treatment for clubfoot cannot alter the structural differences inside the foot. The treatment method takes the structurally abnormal foot that is in an abnormal position and puts it into a series of casts, which slowly turns the foot until it is in a normal position.

If left untreated, clubfoot will make shoe wear problematic and can lead to serious problems, severely limiting activities and even causing difficulty walking.

Prenatal Clubfoot Care: 20 weeks to 40 weeks gestation

Clubfoot can be diagnosed in unborn babies during the mother’s 20-week ultrasound in which the obstetrician or maternal fetal medicine physician reviews anatomy. During this ultrasound, if one or both feet appear to be abnormal, the doctor will refer the mother to visit with an orthopedic specialist to discuss treatment options.

The first appointment with our clubfoot expert Anthony I. Riccio, M.D., consists of a one-on-one conversation about clubfoot and how it is treated. In this appointment, Riccio answers questions that parents have about the condition and educates them on what to expect. This can greatly help a family feel less anxious about the future of their baby and assuage fears about any future disability.

Newborn Clubfoot Care: 1 to 2 weeks old to 2 months old

Riccio encourages families to spend a few days at home enjoying their newborn and then calling Scottish Rite for Children for an evaluation. Ideally, treatment for clubfoot will begin with the first couple of weeks of the baby’s life.

Typical treatment for clubfoot in newborns consists of the Ponseti method, which uses a series of casts and then braces to correct a baby’s clubfoot and prevent its recurrence. In newborns, the first step is to determine the severity of the condition and begin casting.

In serial casting, a cast is applied to the foot or feet once a week for three to five weeks. This brings the foot from upside down and turned inward position to a right side up and turned outward position. In some cases, a simple procedure under local anesthetic is performed to release tightness in the Achilles tendon and bring the foot into a normal position. After three to five weeks of progressive casting, a final cast is applied to hold the foot in the normal position for three weeks.

Infant Clubfoot Care: 2 months old to 7 to 12-months-old

After serial casting is completed, the next phase in clubfoot treatment is bracing to maintain the correction that was achieved through casting. Babies will wear a brace called a boot and bar brace consisting of soft silicone lined shoes with soft suede straps. These shoes are connected to each other by a bar to keep the feet turned outward.

Scottish Rite follows the protocol set by the International Clubfoot Congress of wearing the brace for 23 hours a day until the baby is beginning to pull up to stand, which usually happens between 7 to 12 months of age. Bracing does not interfere with the baby’s ability to reach developmental milestones, such as rolling over, sitting independently or crawling.

Toddler Clubfoot Care: 7 to 12 months old to 4 years old

After the baby begins pulling up to stand, wearing of the boot and bar brace is transitioned to nighttime only until the child reaches age 4. If bracing is not done in its entirety, the risk of clubfoot recurrence approaches 100%.

According to research at Scottish Rite, 70-80% of children will not require further treatment after the Ponseti method. Unfortunately, because clubfoot is a structural, congenital difference, approximately 20% of children will relapse and need further treatment, despite the medical providers and families doing everything correctly.

While clubfoot care may seem daunting, it is a safe and pain-free process that will give your baby the best outcome and prevent them from having difficulties later in life. Our team in the Center for Excellence in Foot stay with our patients and families every step of the way.

Learn more about clubfoot.

Donor Spotlight: A Promise Kept in Abundance

Donor Spotlight: A Promise Kept in Abundance

“Scottish Rite for Children provides the best care in the world, regardless of a family’s ability to pay,” says retired Texas State Senator Troy Fraser. Fifty years ago, Troy and his wife, Linda, experienced this world-class care firsthand — at a time when they needed it most. It changed the trajectory of their lives and inspired them to become champions for Scottish Rite.

The Frasers had their first child, a son, in 1972. Chase was born with clubfoot, a surprise to the family. “His foot was totally upside down,” Linda says. “The doctor said, ‘We just hope that he can walk,’ and I said, ‘No. Chase will be able to walk.’” The Frasers discovered Scottish Rite for Children and found answers for Chase’s condition with the chief of staff at the time, the late Brandon Carrell, M.D.

“Linda was pregnant with our second child, and the company that I was working for went bankrupt, so I lost my job and our health insurance,” Troy says. Anticipating a new addition to the family and Chase’s care, Troy tried to make arrangements with Scottish Rite to pay for Chase’s surgery over time, unaware that Scottish Rite would cover his care. When they learned that they would not receive a bill, it was a profound moment that stuck with them. “Scottish Rite was like an angel that came down from heaven,” Troy says. “Linda and I made a commitment that we would pay them back.”

The Frasers have graciously kept their promise and then some. For decades, they have supported Scottish Rite. Troy helped start the Central Texas Golf Classic, a golf tournament in Austin that has raised significant funds to benefit Scottish Rite patients. “To witness the heart that Troy, Linda and their family have for Scottish Rite for Children is truly amazing,” says Vice President of Development Stephanie Brigger. “They have experienced what Scottish Rite is all about, and now they are living out their commitment to support others who need our services and expertise.”

The Frasers’ favorite time of year is when a group of Scottish Rite patients participate in the Amputee Ski Trip in Winter Park, Colorado. Since 2015, the Frasers have hosted a dinner for the participants at their Colorado home. “To see those big smiles on their faces when they’re coming down that mountain,” Linda says, “it’s magical.” Moved by the experience, the Frasers established the Fraser Family Fund, which provides funding for the ski trip, prosthetic limbs and rehabilitation for Scottish Rite patients. To date, the Frasers have contributed nearly $1 million.

“What Scottish Rite did for our family was such a blessing,” Linda says. “They gave our son the ability to walk and become the man he is today. Our lives would not be what they are without Scottish Rite.”
Read the full issue.

Infantile Clubfoot Deformity

Infantile Clubfoot Deformity

Clubfoot deformity occurs in one in 1,000 live births, making it the second most common congenital deformity of the foot (after postaxial polydactyly) and one of the most encountered infantile musculoskeletal congenital differences. In contrast to other common infantile foot deformities, such as metatarsus adductus and calcaneovalgus deformities, a clubfoot is not a normal foot that has been “packaged” into an abnormal position. Rather, a clubfoot is a true congenital deformity. There are structural differences inside the foot that create the outward deformity. The shape of the tarsal bones is not the same as that of a child with a normal foot. The elasticity of the soft tissues is much less than in a child with a normal foot, and arterial vessels are often absent or aberrant. Some of the extensor muscles in the leg have been shown to have an exponentially higher number of contractile elements (actin and myosin filaments) and are thus able to generate force at what is essentially a superhuman level.

Despite our understanding of the underlying anatomic and histologic differences in clubfeet, the exact etiology of the deformity remains unknown. Although genetic aberrancies have been identified that are associated with the clubfoot, these appear to be a result of somatic mutations, and thus, the deformity does not appear to run in families with any identifiable pattern of inheritance.

In approaching the treatment of a clubfoot, it is essential for families and providers to understand the presence of these congenital differences because our method of treating clubfoot cannot alter any of them. We can’t change the shape of the bones. We can’t improve the elasticity of the soft tissues. We can’t change the way the blood vessels move into the foot, and we can’t change the power with which certain muscles fire. Therefore, the goal of clubfoot treatment isn’t to create a normal foot. Rather, the goal of treatment is to take a structurally abnormal foot, which is also in an abnormal position, and through a series of casts applied weekly, slowly convert into an abnormal foot structurally that is ultimately in a near normal or completely normal position. Also, this method limits the need for surgery, which creates scarring and stiffness, thereby preserving as much motion of the foot as possible.

The Ponseti method of treatment is the gold standard of care worldwide for clubfoot deformity. This involves weekly serial casting of the involved foot or feet, with each cast applied in a manner to correct a different component of the clubfoot deformity. These casts are very effective at correcting every component of the clubfoot deformity with great success, save for the contracture of the Achilles tendon, which drives an oftentimes rigid equinus (plantarflexion) deformity of the ankle. Approximately 90% of clubfeet require a percutaneous transection of the Achilles tendon. This is performed in the clinic with topical anesthesia in children aged less than 3 months to overcome this component deformity. Following the heel cord tenotomy, the ankle can be acutely dorsiflexed to at least 10 to 15 degrees, and that position is maintained in a final cast that is kept in place for three weeks.

On average, it takes about four weeks of weekly casting to correct the component deformities of the cavus, hindfoot varus, and metatarsus adductus. That brings the foot from what is essentially an upside down and turned inward position to a right-side-up and turned-out position. At that point, if the ankle remains in equinus, this deformity is corrected with a heel cord tenotomy and a final three-week cast, resulting in a total time to achieve full correction of about seven weeks. As we ideally begin treatment within one or two weeks of life, most deformities are corrected by or before 2 months of age.

It cannot be overstated that deformity correction is just the first part of the treatment of a clubfoot deformity. Maintaining that correction is essential and, in many regards, more difficult. Seven weeks in a cast simply cannot overcome months of intrauterine gestation and the various congenital differences present within these feet. Without a means of maintaining correction, corrected clubfeet will universally and quickly revert to their initial position of deformity.
Maintenance of correction is achieved by keeping the ankles dorsiflexed and the feet externally rotated in what is typically called a “boot and bar” construct. While there are a variety of Ponseti-type braces available, most consist of soft silicone lined shoes with soft suede straps. Regardless of whether the deformity is unilateral or bilateral, these shoes are applied to both feet and connected to each other by a bar. The bar holds the shoes at 60 to 70 degrees of external rotation, and the shoe straps hold the ankles in neutral dorsiflexion.

Though bracing protocols vary to some degree, our protocol mirrors that agreed upon at the International Clubfoot Congress and consists of brace use for 23 hours a day until the child begins to pull to stand and 12 hours a night thereafter until age 4. The braces do not interfere with the achievement of developmental milestones, such as sitting up, rolling over, crawling or standing. The transition from full-time to part-time use is based entirely on the fact that once a child is able to pull to a standing position, they will soon spend more time on their feet. At that time, their own body weight will help to keep their feet flat on the ground. Until that time, babies spend most of their time lying down and sitting, during which the feet are held in a relaxed position. That can result in tightening of the heels cords and a recurrence of equinus.

Bracing is most difficult on parents for the first two weeks after the child comes out of their post-tenotomy cast. After seven weeks of casting, having anything other than cast padding surrounding their feet feels different and can cause fussiness. Parents are counseled extensively about this so they can anticipate and develop strategies to keep the braces in place despite frustration on the part of the child.

As mentioned, the use of the brace and the prescribed protocol is essential to long-term treatment success. If the braces aren’t used as recommended, the risk of recurrence of the deformity approaches 100%. These recurrences can be much more difficult to manage in older children than during infancy. It typically requires repeat casting and general anesthesia for either a repeat heel cord tenotomy or a more invasive surgical intervention.

Unfortunately, even when perfect correction is achieved with casting, and parents are compliant with brace use, a percentage of these deformities still recur and require additional treatment due to the structural congenital differences present. Research has demonstrated that with parental bracing compliance, about 80% of clubfoot patients never need any additional treatment. However, despite everyone’s best efforts, 20% of children still need some additional treatment due to recurrence. These recurrent deformities are most commonly the result of an imbalanced muscle pull across the foot due to a relatively overpowered tibialis anterior tendon. When relatively overpowered, this muscle, due to its insertion along the medial aspect of the foot, supinates the foot during dorsiflexion. That results in the touchdown of the lateral border of the foot during the initial stance phase of gait. This supination, in turn, slowly drives the foot inward and into further supination with weightbearing. Such recurrences are easily managed with a brief period of repeat casting to correct any relapsed deformities. That’s then followed by a transfer of the offending tendon to the dorsum of the foot to remove that supination moment during dorsiflexion.

With an experienced team of providers and parental dedication to brace use, these initially dramatic foot deformities can be corrected beautifully and without any long-term deficits or disabilities. However, it is important to educate parents early regarding certain differences in the foot or feet following treatment. A clubfoot is always smaller than a normal foot, sometimes half to a full shoe size smaller than an unaffected contralateral foot. In addition, the calf musculature of children with clubfoot tends to be smaller, though this size difference does not appear to affect strength. These differences are strictly cosmetic and do not alter function. The goal of clubfoot treatment is to allow a foot or feet to sit flat to the ground, have as much flexibility as possible, allow the child to wear any shoes they want, play any sports they want, have any job they want, and do whatever they want with the foot. In achieving this, their corrected clubfoot will function no differently than a normal foot and will never limit a child in any way in any activity they desire.

Download the PDF.

Dr. Anthony I. Riccio is a pediatric orthopedic surgeon and the Director of the Center for Excellence in Foot at Scottish Rite for Children.

Researchers At Scottish Rite For Children Awarded Grant From National Institutes Of Health For Clubfoot Genetics Research

Researchers At Scottish Rite For Children Awarded Grant From National Institutes Of Health For Clubfoot Genetics Research

Researchers at Scottish Rite for Children and UT Southwestern Medical Center were recently awarded a grant from the National Institutes of Health (NIH) that will bring new opportunities to discover genetic causes of clubfoot. Clubfoot is a complex foot deformity where one or both feet are turned inward and pointed downward. At Scottish Rite, two nonoperative treatment methods are provided to children with clubfoot, though at times, surgical management may be required.
 
A research team at Scottish Rite, led by Jonathan J. Rios, Ph.D., is investigating the genetic basis of clubfoot. In 2021, Dr. Rios’ team published the largest genetic association study for clubfoot, which included analysis of approximately 8 million genetic markers in more than 8,000 individuals. As part of this effort, his team identified the first gene, FSTL5, associated with clubfoot using this approach. Using similar strategies, Carol Wise, Ph.D., Director of Basic Science Research at Scottish Rite, has led studies discovering genes associated with adolescent idiopathic scoliosis. “This award reflects the expertise of our research staff and the organization’s commitment to research excellence, a combination that enables continued discoveries of the genetic basis for pediatric orthopedic conditions treated at our institution,” Dr. Wise says.

Dr. Rios’ new award will utilize whole-genome sequencing to discover genetic causes of clubfoot. As part of this award, the Gabriella Miller Kid’s First Program will sequence the entire genomes of 407 individuals from 85 families with clubfoot. “The Gabriella Miller Program is a unique opportunity to apply comprehensive genomic technologies to tackle unanswered questions in the field and to discover genetic causes of pediatric orthopedic disorders,” Dr. Rios says. The new Kids First Project on Congenital Clubfoot, led by Dr. Rios, is a collaboration with Dr. Jacqueline Hecht, Associate Dean of Research at the McGovern Medical School at UTHealth Houston.

This is the second Gabriella Miller Project awarded to Dr. Rios. In 2016, the Gabriella Miller Project awarded Drs. Rios and Wise’s study of adolescent idiopathic scoliosis, which included whole-genome sequencing of 598 individuals from 168 families. “Scoliosis and clubfoot are the most frequent orthopedic conditions treated at Scottish Rite,” says Scottish Rite Chief of Staff Daniel J. Sucato, M.D., M.S. “Genetic and basic research is fundamental to improving how we care for children, and ‘big data’ studies such as these allow our scientists to tackle new research questions that will advance our understanding of these conditions.” Learn more about research at Scottish Rite for Children and the Scottish Rite for Children Molecular Genetics research team. Jonathan J. Rios, Ph.D., is the co-director of Molecular Genetics at Scottish Rite, as well as an associate professor in the McDermott Center for Human Growth and Development and the Departments of Orthopaedic Surgery and Pediatrics and is a member of the Simmons Comprehensive Cancer Center at The University of Texas Southwestern Medical Center (UT Southwestern). Carol Wise, Ph.D., is the Director of Basic Research at Scottish Rite and is a professor in the McDermott Center for Human Growth and Development and the Departments of Orthopaedic Surgery and Pediatrics at UT Southwestern. Daniel J. Sucato, M.D., M.S., is the Chief of Staff at Scottish Rite and is a professor in the Department of Orthopaedic Surgery at UT Southwestern.