World Birth Defects Day: “Behind every diagnosis is a story that deserves to be supported through strong public policies and strengthened health systems”

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Interview with Pablo Durán, Regional Advisor on Perinatal and Neonatal Health at PAHO

Washington, D.C., March 3, 2026 (PAHO) – Today marks World Birth Defects Day, an opportunity to raise awareness about a group of conditions that remain one of the leading causes of neonatal mortality and childhood disability in the Region of the Americas. Although many can be prevented or treated, thousands of families each year face diagnoses that require specialized care, continuous follow-up, and comprehensive support.

Under this year’s theme, “Every journey matters,” we are highlighting that these conditions affect not only those born with them, but also their families and communities, and underscores the importance of strengthening prevention and timely access to quality health services.

In this interview, Pablo Durán, Regional Advisor on Perinatal and Neonatal Health at the Pan American Health Organization (PAHO), shares reflections on persistent challenges, the interventions that have shown the greatest impact in the region, and the actions needed to reduce the impact of birth defects through an equity-based, non-stigmatizing approach.

pablo duran
Pablo Durán, Regional Advisor on Perinatal and Neonatal Health at PAHO.

Why do birth defects remain one of the leading causes of neonatal mortality in the Americas, despite progress in child health?

Although the Region of the Americas has made significant progress in reducing neonatal mortality—from 12.9 deaths per 1,000 live births in 2000 to 7.1 in 2023, according to PAHO and UN data—deaths due to congenital malformations have not declined at the same pace.

Today we know that more than 20,000 newborns die each year from birth defects in the Region, and that nearly 22% of deaths in the first month of life are associated with these conditions. As we gain control over other preventable causes, such as infections or complications during childbirth, congenital anomalies account for a greater relative share of neonatal mortality.

What explains this gap?

The gap can be explained by several factors. The interventions that reduced other causes of neonatal and childhood mortality—such as improvements in nutritional status, infection control, prenatal and delivery care, and vaccination—are specific, relatively simple, and cost-effective actions.

In contrast, preventing and addressing birth defects requires more complex and sustained interventions across the life course: before pregnancy, during gestation, and after birth. It involves actions related to health, nutrition, the environment, and access to specialized services.

In addition, inequalities persist in access to prevention, early diagnosis, and specialized care. We also continue to face challenges in surveillance systems, which makes it difficult to fully measure the problem and design more precise responses. Many of these conditions have multiple—and in some cases unknown—causes, making prevention and reduction more complex.

What are the most common causes of birth defects in our region, and which are preventable?

The causes are multiple. They include genetic factors, nutritional deficiencies—such as lack of folic acid—infections during pregnancy such as rubella and Zika virus, as well as environmental exposures.

Not all are preventable, but a significant number can be avoided or mitigated through effective public health interventions, especially those related to proper nutrition, vaccination, and the prevention of infections during pregnancy.

That is why it is essential to strengthen access and quality care before and during pregnancy. Prevention begins even before conception, with information, family planning, and appropriate health check-ups that allow for early action.

What public health interventions have shown the greatest impact in prevention?

Among the interventions with the strongest evidence of impact is food fortification with folic acid, which has been shown to significantly reduce central nervous system birth defects, and vaccination against rubella, which prevents congenital rubella syndrome.

These measures, together with epidemiological surveillance, screening and registry systems, and the strengthening of health systems, are fundamental pillars for reducing the burden of these conditions.

PAHO has developed the Birth Defects Repository for the Americas. How can this tool improve public policy and decision-making?

The Repository consolidates data reported by national surveillance systems in Latin America and the Caribbean, many of which have decades of experience monitoring birth defects. Today, more than 15 countries have surveillance programs in place, with varying levels of coverage, and others are advancing with technical support from PAHO.

This tool improves comparability between countries, helps identify trends and gaps, and strengthens evidence-based decision-making. Having timely, high-quality information is essential to guide resource allocation, plan services, and prioritize interventions—especially for conditions that can be treated after birth, such as certain congenital heart defects or neurometabolic disorders.

What else is PAHO doing to support Member States in improving care and services?

PAHO also supports countries by generating evidence, providing technical cooperation and training, and assisting in the development of public policies aimed at prevention, early detection, and comprehensive care.

Many of these actions do not require complex or costly interventions. Significant progress can be achieved through primary health care—particularly in preconception and prenatal care—and this is where PAHO works closely with countries.

We also promote a comprehensive approach that combines prevention, timely diagnosis, access to specialized treatment, and continuous follow-up, with an emphasis on equity and without stigmatization. Because behind every diagnosis there is a family that needs support and quality services.

What lessons did the 2016–2017 Zika epidemic leave regarding surveillance and response to birth defects?

The Zika epidemic highlighted the importance of having coordinated surveillance systems capable of detecting unusual increases in specific congenital anomalies at an early stage. It also underscored the need to integrate epidemiological surveillance with clinical care and long-term follow-up of affected children, reinforcing a life-course approach.

Above all, it made clear that preventing birth defects linked to infectious diseases—particularly those transmitted by vectors such as mosquitoes—requires comprehensive approaches involving surveillance and response from entomological, laboratory, clinical, and community perspectives.

What are the challenges in Latin America and the Caribbean for early detection and neonatal screening?

Significant challenges remain in terms of coverage, quality, and equity in access to neonatal screening and early diagnosis. Social, economic, and geographic gaps directly influence the timeliness of diagnosis and continuity of care.

Expanding screening coverage and ensuring access to specialized services remain priorities. It is also essential to adopt a comprehensive perspective: addressing environmental factors, strengthening prevention before and during pregnancy, and ensuring service networks that enable antenatal diagnosis, timely referral, and rapid response to conditions such as congenital heart defects or spina bifida.

This year’s theme is “Every journey matters.” What key message would you like to share with families, health teams, and decision-makers?

The message is clear: every child, every family, and every life journey deserves support, respect, and access to quality services. Reducing the impact of birth defects means advancing prevention, early detection, and comprehensive care, with an equity-based and non-stigmatizing approach. Every journey matters because behind every diagnosis there is a story that deserves to be supported through strong public policies, strengthened health systems, and sustained commitment.