Meet the Paraguayan Doctor helping end clubfoot disability for children in her country

August 24, 2021
Daphne Sorensen
President

Less than a decade ago, about 85% of children born with clubfoot in Paraguay lacked access to treatment and lived with its preventable disability. Today, Paraguay has reversed the statistics for a child born with clubfoot in the country. Over 82% of newborns were identified and treated before their first birthday in the past year.

Children with disabilities experience higher rates of poor health, poverty, hunger, neglect, violence, and physical and sexual abuse.1,2 They lack access to lifechanging assistive technologies—including, among others, clubfoot braces, wheelchairs, and hearing aids—that could help them fully participate in school and their communities.3,4 In Latin America, seven out of 10 do not attend school, and at least 50,000 children live in institutions.5

“Clubfoot has a negative social impact on children. They are stigmatized at school—if they even get to school.”

Dr. Liza Valdez

Once the Ponseti method earned global endorsement as the optimal first-line treatment, clubfoot became more readily treatable, spurring a concerted effort among physicians to train other orthopedic surgeons in Paraguay in the “new” more effective technique (actually invented in the 1960s).

Dr. Liza Valdez, a pediatric orthopedic surgeon with MiracleFeet’s partner, Fundación Solidaridad, has been at the forefront of Paraguay’s success in reaching newborns early and supporting families through care. Not only has she helped many children gain the ability to walk, wear shoes, go to school, and lead independent lives – her leadership is making widescale treatment coverage possible.

What's driving Paraguay’s success?

51345932383_d25838a61a_k

A national advocate

The first coordinated efforts by physicians in Paraguay to adopt the Ponseti method across the board began in 2007 – but diffusion of the method throughout the country did not happen. What was missing? A champion within the health system. Enter: Dr. Valdez.

Dr. Valdez, who coordinates Paraguay’s clubfoot program, shares qualities in common with other successful advocates among MiracleFeet’s global partnerships. She is highly respected by her peers, an accessible mentor to students, a clinician at heart, and someone who recognizes the value of government-level advocacy for change; she has patience for the processes that create systemic change.

Often these “champions” are not hired to do what they do. They emerge because they have the training, vision, and desire to collaborate with others across complex systems. Without this leadership, a program intervention can lack commitment, unity, or longevity.

51346529026_4b4e448dfa_k

Visibility under National Birth Defect Program

By situating the clubfoot program within public hospitals, where most babies are born, early advocates gained a foothold in efforts to coordinate congenital disability screenings by the Ministry of Health (MoH) and Social Welfare—meaning clubfoot births would be recorded at the national level, making the national prevalence measurable and codifying referral, advocacy, and education networks.

The National Program for Prevention of Birth Defects made it possible to exchange data on clubfoot detection and hold workshops to train nurses and other health workers to identify the condition in newborns. This program is not large or particularly well-resourced, but being situated within the MoH makes it a convener.

“The program is small, and all of us doctors who are part of it stay in touch and share information via WhatsApp,” said Dr. Valdez. “There is good, widespread communication among healthcare professionals from all over the country. People are in touch and seek out information as needed.”

51345809757_239a2edbb7_k

Informal professional networks

What’s really driving Paraguay’s ability to reach most newborns now is a close network of surgeons and pediatricians who communicate and advise each other on patients. They seek advice and act expediently for every child born with a congenital anomaly detected at birth.

Dr. Valdez thinks that that one of the main reasons the Paraguayan experience is successful, is that the doctors’ network is committed and willing to jump in and help.

“As soon as a child is born with clubfoot, the doctors are in touch and decide who is best placed to start treatment. By the time the newborn is leaving the maternity ward, the parents have been given information about treatment and told when and where to go and which doctor they will see.”

51346525711_9597ec6935_k

Addressing structural barriers

Knowing that missed work, transportation costs, and other children’s or family members’ needs can compromise parents’ ability to adhere to the years of appointments required to keep clubfoot patients on track, Fundacion Solidaridad staff promote user-centered practices in service delivery.

When we see a patient who’s traveled for many hours to get to the hospital, we prioritize them. We know these families have to catch buses back home, and the buses only leave at certain times, so we try and accommodate,” explains Dr. Valdez.

The program has opened clinic locations in remote regions, so families spend less time traveling to appointments. They also provide travel subsidies for families so there’s no need to choose between food and transportation. One missed clinic visit can increase a child’s risk of relapse and set the family back, so preventing these barriers is crucial.

Paraguay’s lessons could help children globally.

More children live with a disability today than any time in history. This includes 8 million under the age of 15 in Latin America and the Caribbean (LAC) and over 100 million worldwide. Although far more are surviving preventable deaths compared to three decades ago, millions of children are not thriving because they lack access to essential, lifechanging medical and support services. Children with congenital birth defects comprise a significant portion of the growing population living with a disability.

Clubfoot is not a niche issue that should be relegated to specialist NGOs. It should matter to everyone who defends and promotes children’s rights. Universal screening and treatment for congenital anomalies at birth would mean that, a decade from now, over 150,000 children in Latin America would walk free of clubfoot disability. And creating systems to address the most common birth defect strengthens treatment pathways for other disabilities.

All children have the right to lead healthy lives. 

Dr. Valdez remembers the dream of one child she treated, a 14-year-old with bilateral clubfoot who simply wanted to have “straight” feet so she could wear shoes for her quinceañera birthday party. Thanks to Dr. Valdez, her dream came true. Finding treatment, especially after so many years, felt like a miracle to her and her family. It is a miracle within reach for at least 200,000 every year. And more than a miracle, it is their right.