Daphne de Souza Lima SorensenChief Executive Officer (USA)
When a nonsurgical treatment exists for a common congenital anomaly, why do so many still live with its consequences?
From Afghanistan to Belarus, Venezuela, Myanmar, Haiti or the United States-Mexico border, we live in an unprecedented time of human displacement with millions fleeing their homes in crisis — for a better life, medical attention, or shelter from untenable suffering. Among the most vulnerable of this growing population are children with disabilities.
More children live with a disability today than at any other time in history.2 They experience higher rates of poor health, poverty, hunger, neglect, violence, and abuse.3 They are less likely to go to school, have access to health services, or find employment as adults. They face discrimination and stigma, inaccessible physical and online environments, even institutionalization, and a lack of autonomy in health and legal decision-making. Many, in fact, do not legally exist; their births are never recorded.
Despite high-level advocacy and rhetoric about inclusive development, disabled children have simply been left behind by global health and development agendas. Their rights — including the right to health care and an education, the right to play, and the right to be protected from harm — are routinely violated by systemic inaction and complacency.
I recently met a mother from Venezuela, at a MiracleFeet partner clinic in Ecuador, whose story brought these issues into focus. An outgoing woman, Carolina told me about having no one to turn to when her son was born with clubfoot in Venezuela three years ago. There were no services, no doctors; the health system had collapsed.
The crisis in Venezuela is not new. Those who could leave, had. But, like so many others, Carolina had few options and stayed behind. When she had her son though, she realized the only way to help him was to leave her country—on foot. So she did. She packed up and, with her infant son, walked to Colombia. She became an immigrant.
I’ve been an immigrant most of my life. Born in Brazil, I moved with my parents to Venezuela, then England, and eventually the United States. As an adult, I’ve lived and worked in Bolivia, Mozambique, and Panama. I’ve been able to move effortlessly through and across borders having the good fortune and privilege of “going through the front door,” always with the right papers and documents. When I hear the experiences of people crossing borders, whether for opportunity or safety, without these freedoms, I feel a responsibility to share their stories. Almost always, it’s for their children.
Unable to find work in Colombia to pay for her son’s treatment, someone told Carolina about a clinic in Quito, Ecuador where he could receive care. So she left again, now with a toddler on her back, and walked for almost two weeks to Ecuador’s capital, where he finally began treatment. Today, after a few plaster casts and a brace worn at night (that’s all he needed!) her son is walking and running.
150,000 more families each year cannot access this care for their newborn. A clubfoot diagnosis can completely upend their lives. MiracleFeet exists solely to ensure children born with this preventable disability have access to the same medical care routinely provided in higher-income countries.
Access to clubfoot treatment is a right.
Vast inequities threaten many human rights today, but for clubfoot, this is a gap we know how to close. In dozens of contexts, including conflict and fragile states, MiracleFeet’s local medical partners have proven that clubfoot treatment can be safely, effectively delivered and reach populations at scale.
On World Children’s Day, we affirm our commitment to the Convention on the Rights of the Child, joining UNICEF and a growing chorus of rights-based organizations calling on global health leaders and governments to prioritize and protect the world’s most vulnerable children. The CRC is the most widely ratified human rights treaty in history, but human rights charters are only as good as society’s ability to safeguard the rights of all — not the richest, or ablest, or easiest to reach.
From Caracas to Quito, Carolina walked part of a continent so that her son could walk. No parent should have to go to breathtaking lengths for something as ubiquitous and cheap in the modern world. Treatment for clubfoot or cleft lip, or a new wheelchair, a pair of eyeglasses, or a vaccine — these aren’t miracles. Access to these is a right.
More children are surviving, fewer are thriving.
Only the highest-income countries have seen declines in childhood disability. One major reason is that congenital anomalies — many of which can be prevented or, like clubfoot, treated — have been neglected in low- and middle-income countries for decades. Limited investments in clinical advances — like the Ponseti method for clubfoot, and physical rehabilitation services — means that up to 150 million children have chronic impairments that impact their quality of life and participation in society.
Surging disability among the world’s youth is rooted in health system inequities, but perpetuated by donor-led health priorities that underinvest in chronic conditions. We count reduced deaths, not improved functioning or well-being.
“70 to 75% of birth defects can actually be treated, managed, or improved,” said Ayesha de Costa, scientist
, at the World Health Organization during a recent panel on clubfoot. “To put congenital defects on the agenda in LMICs is our number one priority”
Governments, donors, and health NGOs can help shift this trend by integrating detection and referral of major congenital conditions into child health programs and physiotherapist-led care within primary health initiatives.