World Prematurity Day – Stories from Beyond the NICU

What is one change that would most improve outcomes for preterm babies in the first year at home after discharge?

Corina Croitoru:

What is most important in the first year of life is to have a multidisciplinary system in place, supported by case management.

We can look at the follow-up care process for preterm babies like the construction site of a very complex building. It would be a disaster if there were no construction site manager, or if the architects did not collaborate with the structural and installation engineers. The building would not be finished on time, it would cost much more, and it would not be safe.

In the NICU, the foundation for a child’s development is established, just as the quality of the ground determines the stability of a building. After discharge, follow-up care becomes the “construction site.” If there is no national follow-up system, parents are forced to take on the role of case manager. This is risky for the child, because most parents do not have specialized training in this field. The responsibility lies with the medical system to ensure a coherent structure that helps every child reach their developmental potential. A healthy society helps every child recover and grow, so that later in life, they can play an active role in their family and in society.

Corina’s comparison makes the challenge very clear: follow-up care is not a single appointment or one isolated service - it is a coordinated process. Each professional may have an important role, but without communication and shared planning, families can be left with fragmented care.

For parents, this can mean keeping track of appointments, repeating their baby’s medical history again and again, trying to understand different recommendations, and deciding which concerns need urgent attention. In a well-functioning follow-up system, families should not have to carry this responsibility alone.

A case manager or care coordinator can help bridge this gap. This person can support families by helping them understand next steps, connect with specialists, prepare for appointments, follow up on referrals, and make sure that important information does not get lost between services. For babies born too soon, this kind of coordination can make a meaningful difference, especially in the first year of life when timely support is so important.

What is one message you would like to tell all parents taking their preterm babies home after discharge?

Corina Croitoru:

I advise parents to focus on connecting with their baby after discharge from the NICU. Real connection and healthy attachment are key to healthy cognitive and physical development. At home, you can help compensate for the separation that may have occurred during the NICU stay. You can reconnect with your child by continuing skin-to-skin care as much as possible. With a strong emotional connection to their parents, children gain confidence to discover the world and find ways to overcome challenges.

For many parents, the transition home can feel full of medical tasks: feeding, weighing, monitoring, appointments, exercises, medications, or warning signs to watch for. These are of course all very important parts of care, however, parents are not only caregivers managing a schedule. They are also their baby’s source of comfort, safety, and connection.

After time in the NICU, families may need space and support to build confidence in their relationship with their baby. More often than not, it is the simple moments that matter most: holding the baby close, responding to their cues, practicing skin-to-skin care when possible, speaking gently, feeding with patience, and allowing time for closeness. These moments can help parents and babies reconnect after the stress and separation that may have been part of the NICU experience.

Follow-up care should therefore support both medical needs and family bonding. A strong follow-up system does not only ask, “Is the baby growing?” or “Are the appointments happening?” It also asks, “How are the parents coping?” “Do they feel confident?” “Do they have the support they need?” and “Is the family being cared for as a whole?”

The World Prematurity Day 2026 slogan, “Small babies, big potential. Invest in follow-up care to protect their future,” is a reminder that every baby born too soon deserves the chance to grow, develop, and reach their full potential. To make this possible, families need more than individual appointments. They need coordinated care, clear guidance, and systems that do not leave them alone with complex responsibilities.

By investing in multidisciplinary follow-up care and case management, health systems can help ensure that every baby receives the right support at the right time, and that every family feels accompanied beyond the NICU.

Read more about ARNIS’ mission and the programs they lead in Romania: ARNIS in English | ARNIS.ong

This sudden shift is one of the biggest challenges families face. In the NICU, parents may have regular updates, structured care routines, and healthcare professionals nearby at all times. Once families are home with their baby or babies, they may feel that they alone carry the responsibility of caring for them.

Many parents want to do everything right, but they may still feel unsure. Is the baby feeding enough? Is their breathing normal? Is their growth on track? When should they call a doctor? These questions can feel especially heavy when families do not have easy access to follow-up appointments, community services, peer support, or clear guidance after discharge. Continuous follow-up care can help close this gap. It gives families the opportunity to ask questions, receive practical advice, and identify concerns early. It can also help parents build confidence in caring for their baby and remind them that they are not expected to manage everything alone.

What is one message you would like to tell all parents taking their preterm babies home after discharge?

Désirée Kost:

You are not alone. Trust yourselves, trust your baby, and seek support whenever you need it.

This message is central to follow-up care. Families need information, but they also need encouragement. They need practical tools, but they also need to know that their worries are valid and that asking for help is a sign of strength.

Every family’s journey after the NICU is different. Some babies may need frequent medical appointments or developmental support. Others may need help with feeding, breathing, sleep, or growth monitoring. Parents may also need emotional support as they process their experience and adjust to a new rhythm at home. Follow-up care should recognize all of these needs. It should support the baby, but also the family around the baby. Because when parents feel supported, informed, and confident, babies benefit too.

The World Prematurity Day 2026 slogan, “Small babies, big potential. Invest in follow-up care to protect their future!” reminds us that care must not end at discharge. Babies born too soon deserve the opportunity to grow, develop, and reach their full potential, and families deserve to feel accompanied beyond the NICU. By investing in continuous, meaningful follow-up care, health systems and communities can help protect the future preterm babies and ensure that no family has to face the journey home alone.

Read more about Frühchen & Neokinder Schweiz and the support they offer for NICU families in Switzerland: https://fruehchenschweiz.ch/ 

Doris started the Doris Mollel Foundation in 2015, inspired by her own personal story. She was born preterm, weighing only 900 grams. Today, through her foundation, she supports some of the smallest and most vulnerable newborns and their families in Tanzania, while also advocating for stronger newborn health systems and greater awareness of prematurity.

Her advocacy has also contributed to a major global milestone for the preterm community. In 2025, World Prematurity Day was officially recognized by the World Health Assembly as part of the WHO calendar of global health campaigns. This achievement reflects years of dedication from the global preterm community, including Doris’s tireless efforts to bring the needs of babies born too soon and their families to the attention of decision-makers. With this recognition, World Prematurity Day has become an even stronger platform for advocacy, collaboration, and change.

The World Prematurity Day 2026 slogan, “Small babies, big potential. Invest in follow-up care to protect their future,” reflects the same message at the heart of Doris’s work: every baby born too soon deserves the chance to grow, develop, and reach their full potential. But to make this possible, care must continue beyond the hospital, and communities must be part of the solution.

How can families better support babies born too soon, too small, or sick despite stigma or taboos?

Doris Mollel:

A very good example is how we involve men in Kangaroo Care at home, especially in agricultural and pastoral families. A man may be expected to go and take care of the cows, but when he comes back home, he can wash, return to the family, and help his wife with Kangaroo Care. It may look like a small thing, but we need to engage men and talk to them from the beginning.

We need to make sure men go together with their wives to the healthcare facility during pregnancy. They should be there during delivery, but they should also understand the importance of working together to raise a prematurely born baby.

Doris’s message is clear: family involvement cannot begin only after discharge. It should start early, during pregnancy and birth, so that fathers and other family members understand their role in protecting the baby’s health and development.

This is especially important in communities where prematurity, low birth weight, or newborn illness may be surrounded by stigma, taboos, or traditional beliefs that make it harder for families to seek help openly. In these situations, mothers may carry an enormous burden alone. They may be expected to care for a fragile baby while also managing household responsibilities, financial stress, and emotional pressure.

Involving fathers, relatives, and community members can help change this. When families understand that babies born too soon need warmth, hygiene, feeding support, close monitoring, and timely medical care, they can become active partners in follow-up care. Small actions, such as supporting skin-to-skin care (Kangaroo Care), helping with daily tasks, washing hands before touching the baby, or recognizing warning signs, can make a meaningful difference.

But Doris also emphasizes that organizations and decision-makers need to change how they work with communities.

The challenge is that decision-makers, organization leaders, multilaterals, and governments do not always connect well with community members. When I say community members, I mean the people on the ground, including local communities and societies. In everything we do, in the ideas and decisions we have, we need to decide with them and not for them.

This is the best way to reduce the challenges we see, especially taboos and harmful traditional practices that create discomfort for families who are raising babies born too soon, too small, or sick. If we change our way of thinking and start developing proposals, concepts, and activities together with the end users, the community members, it can really help. They know how best to bring together health messages and their traditional ways of thinking without discrimination and without taking them away from the culture they are used to.

This perspective is essential for meaningful follow-up care. Programs are more likely to be trusted and used when they are shaped with the people they are meant to support. Community members understand local beliefs, family structures, barriers, and strengths. They can help adapt follow-up care in ways that are respectful, realistic, and effective.

For World Prematurity Day 2026, this is a central message: investing in follow-up care also means investing in community partnerships. It means listening to families, working with local leaders, and building support systems that fit the real lives of babies and caregivers after discharge.

What is one message you would like to share with parents taking their preterm babies home after discharge?

Doris Mollel:

My one big message to families, especially African families, is that preterm babies can survive when you give them the right care. As family members, we have to be part of giving them the right care, especially when babies and families are released back home.

Kangaroo Mother Care should continue. Kangaroo Father Care should continue. Skin-to-skin contact should continue. All family members should help make sure the baby is in good condition.

Families should wash their hands with water and soap before touching the baby. The room where the baby sleeps should be clean and hygienic, so that we reduce the risk of infection. These are small things we can do, but babies can survive when we give them the right care.

Doris’ message highlights a simple truth: everyone has a role to play in raising babies born too soon.

For families, this message is both practical and hopeful. After discharge, parents may feel afraid of doing something wrong. But Doris reminds us that many protective steps are simple and possible at home: continuing skin-to-skin care, keeping the baby warm, washing hands, maintaining a clean sleeping space, watching the baby closely, and asking for medical help when needed.

At the same time, these steps should not fall on mothers alone. When fathers, grandparents, siblings, relatives, and community members understand their role, the baby is better protected, and the family is less isolated.

This is what follow-up care can look like at community level: not only formal appointments, but shared knowledge, practical support, and everyday actions that help babies stay safe after leaving the hospital.

The 2026 World Prematurity Day theme calls on governments, health systems, healthcare professionals, advocates, and communities to strengthen follow-up care after discharge. Doris’s work shows why this must include families and communities as active partners. Babies born too soon have big potential, and when the right care continues at home, that potential can be protected.

By listening to communities, addressing stigma with respect, involving fathers and families, and supporting simple but life-saving care practices, we can help more babies born too soon, too small, or sick not only survive, but grow, develop, and thrive beyond the NICU.

Read more about Doris Mollel Foundation’s mission and the programs they lead in Tanzania: Doris Mollel Foundation

Although follow-up care looks very different around the world, these feelings of fear, uncertainty, and helplessness after NICU discharge are familiar to many mothers, fathers, and caregivers across countries and communities. 

How can this uncertainty be reduced? How can knowledge gaps be addressed so that babies are safe and supported in their first days and weeks at home?

We spoke with Isabelle Furaha, Founder and CEO of Mama Tulia Ministries in Uganda, to learn more about what follow-up care looks like in her community and how her organization supports families during the transition from hospital to home.

Mama Tulia Ministries has made it its mission to support and educate families beyond the NICU and to help address the challenges families face throughout their prematurity journey. Much of the organization’s work focuses on what happens after babies leave the hospital. This includes follow-up visits at home, support for a safe transition into the home environment, and access to specialized services such as ROP screening (short for Retinopathy of Prematurity).

The organization’s efforts were recognized at the GFCNI Parent and Patient Organizations’ Summit in March 2026, where Mama Tulia received the Innovation and Collaboration Award. Their impact shows the outstanding efforts of the team: Over the years, the organization has reached more than 50,000 mothers and babies, conducted over 729 home visits, and facilitated more than 500 hospital engagements (as of July 2026). Read more about their award and achievements on Mama Tulia’s website.

What is the biggest gap families face after leaving the hospital?

Isabelle Furaha:

At home after being discharged from the NICU, parents are still managing fragile babies’ feeding, monitoring growth, and watching for warning signs while also dealing with fear and uncertainty. Mama Tulia exists to bridge this gap through post-discharge education, follow-up care, and support programs like home visits. We also created Tulia Tender Nest Home, a transitional home that has already supported 20 mothers and 24 babies as they safely move from hospital to home (as of July 2026).

In the Tulia Tender Nest Home, mothers receive breastfeeding support, Kangaroo Care guidance, nutritious meals, emotional and spiritual care, health education, and the confidence to care for their little ones.

An additional challenge that many mothers in Uganda face is the loss of support from their husbands or partners after the preterm birth of a baby, increasing financial pressure and the emotional toll. For this reason, equipping mothers with knowledge, confidence, and practical support can be one of the most important ways to help babies and families safely transition from hospital to home.

Isabelle’s commitment to this work is deeply personal. She experienced the loss of her preterm baby, who passed away just one day after birth. When her second pregnancy also ended in preterm birth, she once again faced anxiety and helplessness. This time, her beautiful daughter survived, and Isabelle could take her home after the NICU. 

What is one message you would like to share with parents taking their preterm babies home after discharge?

Isabelle Furaha:

You know your baby and you are not alone. It’s okay to feel unsure, but trust what you’ve learned and ask for help when needed. Progress may be slow, but every small step matters. Give yourself grace, stay connected to support, and remember your love and care are powerful.

Read more about Mama Tulia Ministries’ mission and the life-saving programs they lead in Uganda: Our Programs | Mama Tulia Ministries