A Voice Beyond the NICU: Why Follow-up Care Can't Be Left to Chance
A baby's discharge from the NICU is a milestone worth celebrating. But for many families, it's also the beginning of a new chapter filled with questions, appointments and uncertainty.
Will their child meet developmental milestones? What happens if concerns arise months or even years later? Who will help them navigate the services and support their child may need?
For babies born prematurely, specialized follow-up care can make an important difference. Yet across Canada, access to that care is far from consistent.
This World Prematurity Day, the Canadian Premature Babies Foundation (CPBF), together with the Canadian Neonatal Follow-Up Network (CNFUN), is calling for change through A Voice Beyond the NICU, a national advocacy initiative championing excellence in neonatal follow-up care.
Why Follow-up Care Matters
Babies born prematurely can face an increased risk of developmental, neurological and other health challenges. Some needs become apparent early, while others may not emerge until a child is older.
Neonatal follow-up programs help identify concerns, monitor development and connect families with appropriate interventions and support. Depending on a child's needs, this may involve physiotherapy, occupational therapy, speech-language pathology, nutritional support and other specialized services.
But access to these programs isn't equal.
Eligibility requirements, available services and the distances families must travel can vary considerably across Canada. Some families have access to coordinated, multidisciplinary care, while others face long journeys, limited resources or gaps in support.
Where a child lives should not determine the care they receive.
Advocating for a Stronger National Approach
Through A Voice Beyond the NICU, CPBF is advocating for neonatal follow-up care to be recognized, adequately funded and standardized across Canada.
Our vision is simple: Every NICU graduate who needs follow-up care should receive it early, as close to home as possible, and as a funded part of neonatal care.
The initiative champions five essential pillars:
Early Identification and Longitudinal Monitoring – Recognizing developmental needs early and continuing to monitor children as they grow.
Family-Centred Developmental Care, Education and Intervention – Supporting families as active partners in their child's development and care.
Equity and Access – Ensuring appropriate services are accessible regardless of geography or circumstances.
Quality Assurance and Accountability – Using consistent standards and outcome measures to strengthen care.
Ongoing Interdisciplinary Education – Supporting collaboration and continued learning among healthcare professionals.
Achieving these goals requires coordinated care pathways, stronger connections between hospitals and community services, and a commitment to supporting children and families beyond NICU discharge.
Families Have a Powerful Role to Play
Meaningful change requires more than recommendations. It requires families, healthcare professionals and decision-makers to work together.
Parents and families can help by sharing their experiences, speaking with elected representatives and asking important questions before leaving the NICU, including:
"Does my baby qualify for follow-up, and when is our first appointment?"
Healthcare professionals can advocate for timely referrals and coordinated services, while hospital and government leaders can help ensure follow-up programs have the resources needed to provide consistent, high-quality care.
Help Us Make Follow-up Care a Priority
The journey of prematurity doesn't end at NICU discharge, and neither should access to appropriate care.
Together, we can work toward a future where every eligible child has access to the follow-up services they need, and every family knows where to turn for support.
Your voice can help move this work forward.
Visit our A Voice Beyond the NICU campaign page to learn more about the initiative, explore our recommendations, send a letter to your provincial or territorial representatives, or share your family's story.
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