World Prematurity Day: Protecting lives and ensuring quality neonatal care for all

PAHO/WHO

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World Prematurity Day is celebrated every November 17th as a day to raise awareness of the challenges faced by premature babies and the critical need for quality neonatal care. In the context of this day, powerful stories emerge of families struggling to provide their premature children with the best possible care. PAHO emphasizes that quality care for these babies should not be a privilege but a right that must be guaranteed for all families.

— November 2024 —

Viviana Fernández from Costa Rica recalls the two months she spent in hospital with her son Matías. "We went home with a not very favorable prognosis... we were excited, but very scared. Seeing myself as the primary caregiver, with no training and with such a fragile baby, was very hard", she remembers. Matías was born prematurely, which not only involved a fight for his life but also generated constant uncertainty about his future.

In the Americas, nearly 1 in 10 babies is born prematurely, amounting to over a million newborns each year. Prematurity complications are the leading cause of neonatal death, and survivors are at higher risk of disabilities and developmental impairments, underscoring the urgent need for specialized care and family support.

For the Pan American Health Organization’s (PAHO) regional advisor on Perinatal Health, Pablo Durán, "it is essential that babies not only receive quality care within the hospital, but also during follow-up after discharge, since families and caregivers play a crucial role in their survival and development."

In this sense, practices such as breastfeeding and kangaroo care (skin-to-skin contact) are essential for the baby's development and for strengthening the bond between mother and child.

Navigating the uncertainty of premature birth

Angélica Gómez also experienced the anguish of seeing her son, Santiago, born prematurely. At 26 weeks of pregnancy, Angélica was urgently admitted to hospital in Mexico. Following an emergency cesarean section during which Angélica lost consciousness due to severe complications, "I didn’t want to ask about Santiago for fear they’d tell me he had died," she recalls. When she woke up, uncertainty enveloped her. "On the third day, my husband asked me if I remembered that we had had a son. 'He's waiting for you, he's waiting for you to recover,' he told me."

That was the encouragement she needed to recover and be able to care for her baby. However, she was unable to find the support she needed. "We were not sufficiently prepared or given enough information about the care that Santi needed. I had moments of depression, panic attacks. You want the pain and uncertainty to end," adds Angélica, who, after her experience 18 years ago, founded the Mexican Association for Parents of Premature Babies Pequeño Nunu, with the aim of providing support to other families who had gone through or were going through the same thing as her.

The importance of family support networks

Viviana’s case has points in common with Angélica’s. "11 years have passed since then, and I felt very alone, without close support and full of fear. I didn’t know anyone who had gone through the same thing until I started searching the internet. Then, I found networks of families sharing information and testimonies, and although I didn’t know them, I felt supported and knew I wasn’t alone."

At first, Viviana and other mothers she met in the Neonatal Intensive Care Unit (NICU) began sharing experiences in a closed Facebook group. Over time, the group expanded to include health professionals, eventually leading to the creation of Fundaprema, an organization aimed at improving conditions for newborns and their families in Costa Rica, supporting families and creating a bridge with professionals.

Persisting challenges: Improving communication and access to care

Despite progress in family care and efforts to sensitize health staff, challenges remain. Mothers report resistance from health teams to allowing parents unlimited access to the NICU, unclear communication at times, and insufficient legal frameworks to ensure family involvement in care.

"Most doctors and nurses are very empathetic and provide humanized treatment, but once babies are discharged from the hospital, parents do not know what to do, as they were not empowered or prepared during the hospital stay," commented the founder of Fundaprema.

Another challenge is inequity in access to quality care. A study published by PAHO highlights that neonatal mortality is higher in countries with lower socioeconomic development and in areas with more vulnerable families. "Quality care for premature newborns and their families cannot be a privilege, it is a right that must be guaranteed," said Durán.

Bringing quality care closer to families

Neonatal mortality in Latin America and the Caribbean remains a major concern. 57% of deaths in children under 5 in the region occur during the first 28 days of life. Prematurity, along with complications such as asphyxia and infections, is one of the leading causes of neonatal death in the region.

Suzanne Serruya, Director of PAHO’s Latin American Center for Perinatology, Women and Reproductive Health (CLAP/SMR), stated that it is urgent to redouble efforts to reduce the social inequalities that impact these numbers. “Actions must focus on the most vulnerable populations, where we are seeing the highest rates of neonatal mortality."

To contribute to the reduction of these inequalities, PAHO has promoted several initiatives, such as the free mobile application eCBB, which provides information on newborn care to both health professionals, families and caregivers. The organization has also developed a community flipchart to train community health workers in the follow-up of newborns, which has proven useful for improving care in rural and resource-limited areas. Collaboration with organizations of families of premature babies is also important to help identify needs, coordinate actions, and provide tools to strengthen their work.

Overcoming the odds

Today, the children of Angélica and Viviana stand as examples of resilience. Santiago, who was born at 1005 grams at 27 weeks, is now 20 years old, has autism and is studying photography at university. Matías, who was born at 1000 grams at 28 weeks, is 11 years old and, although he is living with cerebral palsy, autism and limited vision, he has learned to walk and continues to make progress with ongoing support.

Both are a testament to the joint work of families, health professionals, and support organizations, which can make all the difference between life and death for many premature babies.

Angélica junto a sus hijas, su hijo Santiago y su marido. — Angélica with her daughters, her son Santiago and her husband.

Viviana junto a su hijo Matías — Viviana with her son Matías.

Costa Rica

United States of America

Newborn Health