Patient Stories Beyond Clubfoot: John and Sam’s Story

John and Sam are already multisport athletes and proud big brothers to little sister, Chloe. Nothing holds them back from channeling their energy-not even being born with clubfoot.

Let's go back 10 years when mom, Emily, was pregnant with John. Thanks to modern technology, a fetal ultrasound was able to detect the abnormality during pregnancy. Emily's care team suspected bilateral (both feet) clubfoot, later confirmed by her maternal-fetal medicine (MFM) specialist.

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Clubfoot, or idiopathic clubfoot, is a condition typically present at birth and often detected before birth on ultrasound. The exact cause of clubfoot remains unknown, but studies suggest a combination of genetic and environmental factors are involved. Clubfoot occurs more often in boys and may run in the family and is occasionally associated with genetic or neurologic syndromes.

The family meets Dr. Mack, clubfoot expert

Emily's pediatrician-to-be, Richard Geller, MD, put her in contact with Phil Mack, MD, Orthopedic Surgeon at Connecticut Children's, who has extensive experience in clubfoot treatment. Dr. Mack asked to see John shortly after birth for an initial visit.

"When a baby is born with a clubfoot, their foot is misshapen," said Dr. Mack. "The whole foot points down and inward, and the undersurface of the foot is often pointed upward as a result. A true clubfoot will not correct without treatment."

Treatment began just a few days after baby John was born. The first step was applying a long leg cast, changed weekly, for a total of six weeks. After the initial casting, the last component of the clubfoot correction often requires the heel cord to be cut as in John's case. One more cast for three weeks completed the correction.

The Ponseti method is the clubfoot gold standard of care

John's treatment, consisting of foot manipulation, casting and heel cord tenotomy, utilizes the revolutionary Ponseti method of clubfoot treatment. Here is a brief rundown of the technique, beautiful in its simplicity:

• Clubfoot treatment always begins with a complete examination of the infant, looking for any genetic or neurologic source of the clubfoot. If nothing is found, then the foot is labeled an "idiopathic clubfoot", as the exact cause is unknown.
• Ponseti treatment begins with long leg casting, usually one week apart for five or six weeks. The casting sequence is very specific, correcting the foot in stepwise fashion. If the foot completely corrects, no heel cord tenotomy is needed. If the heel cord remains very tight as it does in most cases, it should be cut.
• During the heel cord tenotomy, Dr. Mack lengthened the Achilles tendon in the office using a numbing injection of Lidocaine to improve the flexibility of the ankle and position of the foot. John was able to bottle-feed during the procedure and go home the same day with a cast which is worn continuously for three weeks.
• After three weeks, the final cast is removed and the now well-corrected clubfoot is fitting a special Ponseti set of shoes and bar to maintain the correction. Typically the bar and shoe are worn full time for three months then gradually weaned down to nighttime use for three to four years. It is critical to the success of treatment.

Why is the Ponseti technique so important for fixing clubfoot?

The Ponseti technique avoids the more aggressive treatment surgeons performed in the past. The beauty of Ponseti technique its ability to correct the clubfoot position without opening multiple joints and lengthening multiple tendons. Clubfeet treated by the Ponseti technique may require repeat casting or limited surgery should the foot begin to lose correction as the child grows. This may occur in 20 to 30% of the cases as it did with John.

Another fun fact about the Ponseti method: In other countries, many people born with clubfoot would never get treatment. They would walk around with misshapen feet. The Ponseti method, now international, has greatly reduced this scenario.

When John was 3, Emily and Zack learned he'd be a big brother! But, a routine ultrasound also detected clubfoot in Sam's left foot. So, following in his big brother's footsteps (no pun intended) Sam went to Dr. Mack for a cast a few days after birth. Then, he had his outpatient tenotomy at 9 weeks old.

But in true Sam fashion, he tried everything to break out of his post-surgical cast-and it worked a few times. But this meant a lot more visits to Dr. Mack and Robin, the "Master Caster," now retired, in the beginning of his clubfoot journey.

Emily recalls, "We absolutely love Robin, the casting technician that worked with both boys, almost every week. We call him the Master Caster because he'd recognize us and made the experience a personal one. As a mom with a new baby, I was so thankful for the entire medical team."

Fast-forward several months. John is 4 and Sam is 1. A routine scan and a comprehensive gait analysis showed a recurrence of John's clubfoot and that he required another surgery-this time at Connecticut Children's Medical Center, but as an outpatient procedure.

John and Sam are great kids and have been troopers throughout their care. Mom and Dad get it. They understand the nuances and advantages of the Ponseti technique [for clubfoot] and have been astute advocates for Sam and John during their care

Connecticut Children's

At Connecticut Children's, all of our clubfeet patients are followed on a regular basis. Every few weeks the first year after diagnosis and treatment, then every 3-6 months the second year, and finally every 6-12 months until kids turn about 5 years old.

Our clubfoot experts look for evidence of recurrence and will determine whether another surgery is needed if the foot is slowly twisting back. In Connecticut Children's Center for Motion Analysis lab, we can confirm whether the tendon transfer surgery is necessary. All of these protocols are consistent with the 1963 Ponseti technique. Fortunately, this type of recurrence only happens in 30-40% of all clubfoot patients.

"Our Division of Orthopedics offers a Center for Motion Analysis, where we evaluate, diagnose and treat abnormal walking patterns in kids," said Dr. Mack. "It's really one of a kind and we're a world leader in the field. A gait analysis will help determine the course of treatment, before and after surgery."

Today, the boys are doing great

Dr. Mack is happy with both boys' progress. John definitely pushes himself during sports, but he's determined not to let anything get in the way of his dreams. Both boys pay Dr. Mack a visit once a year, and he's always there should anything unexpected happen.

Every visit, they insist on showing Dr. Mack just how far they've come by running-fast-down the hallways.

"I never thought the boys would be playing sports, running and playing with friends!"

Dr. Mack commends the McElroy family. "John and Sam are great kids and have been troopers throughout their care. Mom and Dad get it. They understand the nuances and advantages of the Ponseti technique and have been astute advocates for Sam and John during their care. Most importantly, they allow John and Sam to be focus on being full-throttle kids which is critical to their success. They are a wonderful family to work with and it is always a pleasure seeing them in follow-up."

And regarding her boys, Emily looks back fondly. "I never thought my boys would be playing sports, running and playing with friends at 6 and 9. Looking back, it was all worth it. They can do anything they want to do. It's not the end of the world for them."

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