A mother’s experience with stigma, charlatans, and the long road to acceptance is a sad refrain in the story of clubfoot and childhood disability.

Lucienne welcomed her first child, Modrich, into the world with open arms and an open heart. Her family, however, was not as accepting.

“I always had strong support from my family in all my choices, especially from my father,” Lucienne shares, “but when Modrich was born with clubfoot, it was a shock. My own father was unsupportive and said hurtful things. I heard a lot of harsh comments from people like, ‘it’s a beast’ and ‘get rid of it.”

The cruelty she experienced in early motherhood devastated Lucienne, but strengthened her determination to find help for son—an undertaking that would cost her more than she ever could have anticipated. Accurate information was hard to come by, and her initial search for clubfoot treatment led her down a costly and futile path.

Although Modrich was born in a village near the capital city of the Alaotra-Mangoro region in central Madagascar, no health workers they met knew much about clubfoot or its solution. Lucienne initially sought care from local doctors. After their treatments proved ineffective, she tried traditional healers, but Modrich’s feet remained unchanged.

Disappointed but not deterred, Lucienne decided to visit a bone setter she heard about who lived in a village in southern Madagascar far away from her home. They made the long journey to see him, but after three months and $700—her life savings—Modrich’s feet were exactly the same. With the urgency for treatment increasing as Modrich neared walking age, Lucienne returned home devastated and out of options.

“The cost of the care ruined us. All the livestock was sold, and our store went bankrupt.” The mounting financial and emotional stress also took a toll on Lucienne’s marriage, and she and her husband separated. “I felt lost, abandoned,” she said woefully.

Thousands of parents in Madagascar struggle to find the same care. Increasing awareness of proper treatment is often more challenging than providing treatment itself due to Madagascar’s unreliable road network and limited access to television and radio media, and limited internet access, especially for the estimated 80% of the population who live in rural areas. On top of that, the COVID-19 pandemic and related travel restrictions made accessing health care even more difficult.

The road to care—and acceptance

A few days after his first birthday, Lucienne received an unexpected phone call from Modrich’s father who was in a town several hours away. He had just seen a poster advertising free clubfoot treatment. He phoned the clinic and learned of the nearby hospital that provided care—using the Ponseti method—at no cost to families.

“Fortunately, at that moment, luck finally turned back on our side,” said Lucienne. “I felt like a prisoner who recovered freedom.” Immediately she packed her bags and left for the clinic with Modrich. When she arrived, she was quickly assured by the medical staff that, with a bit of patience, he would be able to walk and run just like any other child.

“Modrich’s situation has improved undeniably. His feet are now straight. He can walk and play with the other kids.”

Lucienne

After the first phase of treatment, Modrich was well on his way to a physically independent life. Now, what Lucienne wants more than anything is to repair the relationship with her family, especially her father. “The signs are there,” she says hopefully, “my father is starting to show affection to Modrich.”

Treating clubfoot can be straightforward.

Ending stigma is not.

“A child that looks different should never have to be ‘corrected’ to be loved and nurtured. We must make that profoundly clear,” says Daphne de Souza Lima Sorensen, president of MiracleFeet.

The Ponseti method, the standard of care for clubfoot, is non-invasive, low cost, and ideal for low-resource settings. Although the process takes years, it provides lasting mobility in 95% of cases. There is no equivalent remedy for ending stigma.

Stigma is a perpetual cycle that millions of children and adolescents with untreated clubfoot, and often their family members, experience worldwide. The less a condition like clubfoot is seen, the less awareness there is about how to support someone with it, the more myths and long-term consequences—exclusion, neglect, and poverty—envelop it. It is a systemic barrier that keeps many people from accessing social resources and medical services that would improve their quality of life.

Information is the only cure for stigma.

With answers and support, fewer children with disabilities will live in the shadows of society. For clubfoot, stigma often starts with limited knowledge in the health sector about physical anomalies at birth. That’s where MiracleFeet’s efforts focus first:

• Training midwives and frontline providers to diagnose clubfoot, so they can give parents accurate information about their child’s condition.
• Working to make the Ponseti method widely available within countries by training physical therapists and other qualified providers to deliver high-quality treatment in more locations accessible to rural communities.

In Madagascar, MiracleFeet is supporting these steps through a formal partnership with the Ministry of Health and Fondation Axion. Together, we are creating the systems and leadership needed to increase clubfoot detection and referral, and expand access to treatment through 11 clinics, including four added in 2021.

In the quest for acceptance and inclusion, parents, too, play a powerful role in shaping community perceptions about clubfoot and connecting families to the support their children need. “I love Modrich from the bottom of my heart, no matter what others think.”