The Power of a Mother’s Love and Parents’ Activism

May 06, 2020

Immediately after her son Jean was born, Katarine knew she had to find treatment for him. Jean, now seven, had bilateral clubfoot. The only treatment option his doctors in Managua, Nicaragua presented to Katarine was an invasive surgery that would involve operating from his knee to his foot.

“I thought he was too small for such a painful operation,” said Katarine. “I told the doctors I had to think about it.”

Instinct drove her to search for another option. She was worried about the comfort and safety of her tiny newborn, and worried about his long-term future.

How parents’ pursuit of alternative treatment revolutionized clubfoot care

Years earlier, parents in the United States had the same reaction when they were told surgery was the only way to treat the common birth defect. Until the early 2000’s, surgery was widely accepted as the standard of care. Most of the 400,000+ Americans today who were born with clubfoot were treated with surgery, and the same was true in Europe and other countries with advanced health systems.

An alternative had long existed—a series of casts and gentle manipulation, followed by a brace worn at night—called the Ponseti method named after the orthopedic surgeon who developed it at the University of Iowa in the 1950s. But few parents knew about it since not many physicians in orthopedics were trained to treat clubfoot with any method but surgery.

The tipping point came in the 1990s, when the internet expanded parents’ access to resources and each other’s advice, and they became increasingly aware of the Ponseti method. They connected through chatrooms and message boards to share information the medical establishment had overlooked for decades, and eventually their advocacy revolutionized clubfoot care in the U.S.

Elsewhere, parents desperate for the solution, still struggle with conflicting advice and limited options

After Jean’s birth, Katarine searched for months for an alternative to surgery. She recalls researching obsessively on her cellphone, reading late into many nights, intuiting that there must be a better option.

She learned of the Ponseti Method through a parent resources page of Dr. Morcuende at the University of Iowa, a leading expert in clubfoot treatment who trained and worked with Dr. Ponseti. She messaged the practice, which connected her with Dr. Mario Sequeira Somoza, an experienced Ponseti practitioner and trainer, at a MiracleFeet-supported clinic in Managua.

“He runs, walks, jumps. He does everything,” Katarine says proudly.

In the past, not only was surgery unaffordable for most families in low- and middle-income countries (LMICs) where 90% of clubfoot cases occur, it was also too complicated and unsafe to administer in many settings. Eight million people in LMICs live with the extreme consequences of this disability due to a lack of treatment for generations, and there are more than 175,000 new cases each year.

Children treated with the Ponseti method experience much better results, without the serious long-term side effects of invasive, complex surgeries. Parents, like Katherine, who bring their children to a MiracleFeet-supported clinic know their child is getting the same high-quality, treatment that children in the U.S. receive.

A global movement driven by parents’ love

The Ponseti Method made it possible to treat a leading birth defect inexpensively and effectively on a global scale, but it took parent activists to pave the way and force the medical industry to reevaluate the best approach. Today, thanks to a powerful, low-cost solution and a network of parents determined to help others access it, clubfoot can be treated virtually anywhere in the world.

MiracleFeet was founded in 2010, just as the Ponseti method became the global standard of care, and is the largest organization solely focused on bringing the treatment to the world’s most vulnerable children in 27 countries.

A Mother’s Story: Katarine’s Instincts Pay Off

“Parents of children with clubfoot are often desperate for a solution,” says Chesca Colloredo-Mansfeld, executive and co-founder of MiracleFeet. “They fear their child will never walk and suffer the extraordinary stigma of life with a physical disability. There is enormous demand for this treatment from parents, and for MiracleFeet’s support from providers to address one of the most common issues seen in orthopedic clinics worldwide.”

Today Jean is walking, running, and jumping through life thanks to the Ponseti method, thanks to powerful parental advocacy, and thanks to his mother’s resolute love.