Introduction
Welcome to the Empowering NICU Parents’ Podcast!
Our podcast is dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU.
As many of you know, November is Prematurity Awareness Month—a time to highlight not only the challenges of premature birth but also the strength, resilience, and lifelong journey of the infants and families affected by it. With 1 in 10 babies worldwide born prematurely, nearly every NICU parent, caregiver, or healthcare provider has been touched by prematurity in some way. And for each of those babies is a family walking beside them, navigating a path that is often unexpected and anything but ordinary.
For this month of awareness, I wanted to bring this particular episode back into the spotlight because it shares information that many parents simply aren’t made aware of, yet can be incredibly empowering as they advocate for their child. When we understand how prematurity influences our children’s development—and how to advocate for their needs—we’re better equipped to guide and support them through each chapter of their lives.
I also want to be transparent about why I chose to reshare this episode this month. When I first created it, I did so not only to deepen my own understanding of this important topic, but to share what I learned with families who may have a premature infant, toddler, or even a middle schooler facing challenges along the way. This episode was deeply personal and incredibly difficult for me to create for many reasons, and I know it may be hard for some of you to listen to as well.
My intention is not to create fear for NICU parents, but to empower you with knowledge—knowledge that can strengthen your confidence and help you continue to be the strong advocate your child needs. Whether you’re a NICU parent, a healthcare provider, or someone hoping to learn more, this episode is meant to shed light on these long-term impacts and offer understanding, connection, and hope.
The Why Behind Empowering NICU Parents – Empowering NICU Parents' Podcast
- The Why Behind Empowering NICU Parents
- From NICU Experience to Nonprofit Mission: A Family’s Journey to Today Is a Good Day
- The Lifelong Journey and Impact of Premature Birth: What Families Should Know
- Wave of Light: Finding Light After Loss
- Culture, Belief, and a Committed Team: The University of Iowa NICU Redefines What’s Possible
Episode Sponsors
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Our NICU Roadmap
Our NICU Roadmap is the only NICU journal parents will need. Our journal is a great resource for NICU parents with educational content, answers to many of their questions, a full glossary plus specific areas to document their baby’s progress each day while in the NICU. Our NICU Roadmap equips parents with questions to ask their baby’s care team each day as well as a designated place to keep track of their baby’s weight, lab values, respiratory settings, feedings, and the plan of care each day. Most importantly, Our NICU Roadmap guides parents and empowers them so they can confidently become and remain an active member of their baby’s care team.
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Newborn Holiday Cards
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Episode 77
*Trigger Warning*
Before we dive in, I want to offer a brief warning and disclaimer about the content of this episode. To be fully transparent, this topic is heavy, and preparing this episode has been one of the most emotionally challenging ones I’ve created for the podcast. Researching it was difficult, writing it down was even harder, and speaking about it will likely be the most challenging part of all.
As I worked on this episode, there were moments when I had to step away to process what I was reading and writing. I already knew some of this information, but to really read it and reflect on the reality that my son missed critical development during part of the second trimester and all of the third was overwhelming. If you’re a parent of a premature infant, this episode may also be difficult for you to hear.
Coming to terms with your child being born early is incredibly difficult—not just immediately after their delivery, but throughout their time in the NICU and the subsequent years that follow. It becomes even harder when you reflect on the stressors they endured during their NICU stay. For my son , it was intubations, painful skin breakdown, PICC lines, heel sticks, IV starts, loud noises, bright lights, the painful separation from his parents, plus so much more! My son is now 10 years old, and like many of you, we still navigate daily challenges—though they likely look different for every child and family. Some of these challenges may be connected to his preterm birth or the stressors he faced in the NICU, although it’s not always clear or possible to know for certain.
And like so many of you, we live in a state of waiting, worrying, and watching, unsure of what the future holds, knowing he is at higher risk for complications we can’t yet predict. It’s a difficult reality, but my hope is that by sharing this episode, I can help bring clarity, support, and empowerment to families walking this journey. As I prepared for this episode, I have had to remind myself repeatedly that my son’s preterm birth and the consequences that continue to follow us daily, are not my fault and resist the pull of maternal guilt—a struggle I know many of us face. But I want to encourage you, as I’ve tried to do for myself, not to let that guilt take hold.
Why I am Resharing this Episode
This episode was deeply personal and incredibly difficult to create, but I chose to reshare it because parents deserve accurate, compassionate information about what prematurity may mean not only theor their child as an infant, but as they grow, as well. When I first created this episode, it was a way to deepen my own understanding while also sharing what I learned with families who may have a premature infant, a toddler, or even a middle schooler facing challenges that could be connected to their early birth. My intention is not to create fear—it is to offer clarity, validation, and empowerment. Whether you’re a NICU parent, a healthcare provider, or someone seeking to understand prematurity more fully, this episode is meant to offer knowledge, connection, and hope.
You can access the full, detailed show notes from the original episode by visiting Episode 64.
The Reality of Premature Birth
Worldwide, about 15 million babies are born prematurely each year—roughly 1 in 10 births. In the United States, the rate is even higher at nearly 10.5%. While prematurity affects families of all backgrounds, certain groups, including Black families, experience significantly higher rates due to disparities in health access and resources, which underscores the importance of addressing health disparities and providing equitable care.
Preterm birth can occur for many reasons—maternal conditions such as preeclampsia or infection, spontaneous preterm labor, or unknown causes—which often leaves families feeling unprepared, confused, and anxious. But regardless of why a baby is born early, the journey that follows is filled with complicated emotions, unfamiliar challenges, and life-changing experiences.
Survival Is Just the Beginning
Advancements in neonatal care have allowed babies as early as 22 weeks to survive. While this is remarkable, survival does not eliminate the risks these infants face as they grow and mature. Many members of the NICU care team never see how life truly unfolds for these children beyond discharge. As both a NICU provider and a NICU parent, I didn’t fully understand the scope of the long-term effects of prematurity until years after my son’s birth.
Premature infants are born before their organs have completed development, and once delivered, they must continue that development in an environment that is inherently stressful and medically complex. This early interruption in growth—combined with the sensory and emotional experience of the NICU—can affect multiple organ systems well into adulthood.
Let me be clear: I would never question the value of saving an infant’s life—that would make me an utter hypocrite both personally and professionally. I know firsthand the dedication, effort, and lifesaving measures that went into saving my son’s life. I am profoundly grateful for my son’s life and feel beyond blessed to watch him grow and see every single thing he has accomplished in his 10 years. I am also deeply thankful for every single member of his NICU care team who had a positive impact on his journey.
With that being said, most members of the NICU team, myself included, do not always see the ongoing struggles or the unique challenges these infants may face as they grow into toddlers, school-aged children, teenagers, and adults. Even as a healthcare provider and a parent, I didn’t fully realize some of the common complications and challenges that are more prevalent in children born prematurely.
It’s humbling to admit that, and it’s why I feel it’s so important to have these conversations—not to cast blame or raise unnecessary alarm, but to create awareness, foster understanding, and help to support families.
The fact of the matter is that premature infants are often born before their major organs have fully developed. Additionally, after their birth, they face an altered and stressful postnatal environment, which disrupts normal organ development and metabolic programming, potentially increasing their risk of chronic diseases later in life.
How Prematurity Affects the Body: A System-by-System Overview
Prematurity impacts almost every major organ system. While preterm birth is commonly linked to an increased risk of respiratory distress syndrome, cerebral palsy, and developmental delays, it also raises the likelihood of complications affecting multiple other organ systems.
Respiratory System
The lungs are one of the most vulnerable systems affected by premature birth. Inside the womb, the air sacs—or alveoli—grow rapidly during the later weeks of pregnancy. When a baby arrives early, that development has to continue outside the womb, often with the help of life-sustaining measures like oxygen, CPAP, or ventilator support. These interventions save lives, yet they also place extra stress on the developing lungs. As a result, some premature infants experience ongoing breathing challenges, wheezing, or asthma as they grow. Some may develop chronic lung conditions like BPD, especially those born extremely premature, while others simply need a little extra time for their lungs to grow and mature. Every child’s journey is unique, and many continue to make remarkable progress over the months and years ahead.
For more information on bronchopulmonary dysplasia or BPD, go and listen to episode 36: Bronchopulmonary Dysplasia in Infants: A Review of Predisposing Factors, Preventative Measures, and Treatments
Kidney Development
The kidneys also undergo important growth during the third trimester. Much of their development happens late in pregnancy, including the formation of nephrons—the tiny filtering units that help remove waste, balance fluids and electrolytes, and support blood pressure regulation. When a baby is born premature, they begin life with fewer nephrons than they would have had if they had stayed in the womb longer. This doesn’t automatically mean they will have kidney problems, but it can place more strain on the nephrons they do have. Over time, this may increase the risk of high blood pressure or kidney concerns, especially for those born very early. With good monitoring and healthy habits, many children continue to do very well, but awareness helps ensure their kidneys receive the attention they deserve throughout their life.
Cardiovascular System
The heart also experiences rapid development during the final weeks of pregnancy. When birth happens early, the heart must adapt sooner than expected to the world outside the womb—working harder, managing higher pressures, and growing under different conditions than it would have in utero. These early adaptations can sometimes influence how the heart functions later in life. Research suggests that people born prematurely may have a slightly higher risk of heart-related challenges as they get older. That said, many infants born premature grow into active, thriving children, teens, and adults. Knowing this background simply helps families and providers be mindful and proactive about heart health over time.
Neurological and Behavioral Development
The brain is one of the most complex and rapidly developing organs, especially during the last months of pregnancy. In the NICU, this development continues—just in a very different environment than nature intended. Premature infants may have differences in areas of the brain that support memory, emotional regulation, attention, and executive functioning. This can translate into learning differences, sensory sensitivities, or behavioral challenges as they grow. For some children, these differences appear early; for others, they become more noticeable during school years. Importantly, none of this is a reflection of a child’s potential. Children born premature are incredibly strong, adaptable, and capable—and with early support, nurturing relationships, close follow-up, and patience, they can continue to flourish in their own beautiful way.
Autism Spectrum Disorder (ASD)
One of the conditions we watch more closely in children born prematurely is Autism Spectrum Disorder (ASD). ASD is a lifelong neurodevelopmental condition that affects how a child communicates, builds relationships, and responds to the world around them. In the general population, ASD occurs in about 1.5% of children. But for babies born very early—especially those delivered before 28 weeks—the likelihood of screening positive is higher.
It’s important to say this gently: higher risk does not mean a diagnosis is inevitable. Many children born preterm do not develop ASD, and early intervention can make an enormous difference for those who do. What research does tell us is that the parts of the brain responsible for social communication, emotional regulation, and sensory processing are still developing rapidly during the last trimester of pregnancy. When birth happens before this critical time is complete, those areas may develop differently.
For parents, hearing about ASD risk can stir up fear or uncertainty, but awareness is powerful. It allows families to look for early signs, ask questions, and seek support sooner—not because something is “wrong,” but because understanding your child’s needs will help them thrive. Many families also share that their child’s unique way of experiencing the world has brought unexpected strengths, perspective, and joy into their lives.
The goal of discussing ASD in the context of prematurity is not to create worry—it’s to help parents feel informed, supported, and empowered to access resources if needed. Every premature infant’s story is different, and their development unfolds in its own beautiful and meaningful way.
Attention-Deficit/Hyperactivity Disorder (ADHD)
ADHD is another condition seen more often in children born prematurely. ADHD affects a child’s ability to focus, regulate impulses, and manage activity levels in ways that can impact both school and home life. In the general population, ADHD is common; in preterm children, the risk is slightly higher, particularly for those born extremely premature.
Why does this happen? Much like with ASD, the areas of the brain responsible for attention, executive function, and impulse regulation grow rapidly during late pregnancy. When that development continues in the NICU—amid stress, bright lights, alarms, medical procedures, and interrupted sleep—those pathways can form differently. This doesn’t mean the outcome is predetermined. It simply means these children may benefit from more intentional observation and support as they grow.
ADHD often shows up later—during preschool or the early school years—when challenges with focus or regulation become more noticeable. For many parents of preterm children, this can feel like yet another unexpected hurdle, especially after already facing so much in the NICU and early childhood. But ADHD is highly manageable, and with the right strategies, children can flourish academically, socially, and emotionally.
It’s also important to note that many children with ADHD have incredible strengths—creativity, curiosity, energy, and out-of-the-box thinking. Premature infants grow into children who are adaptable, determined, and often remarkably resilient. That resilience, paired with early awareness and supportive care, can help them succeed in ways that celebrate who they are rather than focusing solely on the challenges they may face.
Sensory Processing Disorder (SPD)
Sensory Processing Disorder is another area where children born prematurely may need a little extra support. Sensory Processing Disorder affects how a child takes in, interprets, and responds to sensory information—things like touch, sound, movement, and light. Because the NICU is rich with sensory input that an infant would not normally experience so early in life, premature infants often develop sensitivities or preferences that can carry into childhood.
Some children may become overwhelmed by loud noises, bright lights, certain textures, or busy environments. Others may seek extra movement or pressure to feel grounded. As a parent, you might see it in the way your child reacts to clothing, food textures, transitions, or even everyday activities like hair washing or nail trimming. For many NICU parents, these moments can be heartbreaking, especially once you begin to connect the dots between early medical experiences and current behaviors, like I did many years ago.
It is important to understand that SPD is not a reflection of your child’s personality, your parenting, or anything you did or did not do. It is simply their nervous system learning and adapting in its own way after an early start in a world that was louder, brighter, and more intense than it was meant to be at their particular stage of development.
The good news is that children with sensory differences often respond beautifully to early support. Occupational therapists who specialize in sensory integration can offer practical strategies that make daily life easier and less overwhelming for both the child and the family. Sensory strengths are also common—children may be highly observant, deeply intuitive, or incredibly attuned to the world around them in ways that are uniquely their own.
It may be challenging to navigate daily living if your child has a SPD, but it can also open the door to understanding your child more deeply. With awareness, patience, and the right tools, your child can grow, adapt, and thrive in a world that sometimes feels a little too big or too bright for their early sensory systems. Your guidance, your advocacy, and your steady presence make all the difference.
Endocrine and Metabolic Health
Because infants born early miss the final stretch of fat deposition and metabolic programming that occurs late in pregnancy, they may experience differences in how their bodies store fat or regulate insulin as they grow. This can sometimes increase the risk of insulin resistance, diabetes, or changes in body composition later in life. Rapid catch-up growth can also place added metabolic demands on the body. This does not mean these outcomes are inevitable—it simply highlights the importance of healthy habits, balanced nutrition, and long-term follow-up. Many former preemies grow up to lead vibrant, active lives with no complications at all.
Bone and Growth Development
Premature infants also miss out on the final weeks of bone mineralization that occur in utero, which can affect early bone strength and growth. The NICU works hard to support bone health through nutrition, vitamin supplementation, and minimized stress. While some preemies continue to have softer bones early on or may experience growth delays, many catch up beautifully with time, movement, and nutrition. Monitoring growth charts and celebrating steady progress—no matter how slow or unique their curve may be—is key.
The Impact of the NICU Environment
The NICU is a remarkable place filled with advanced care, extraordinary clinicians, and life-saving interventions. But it is also a place filled with sensory experiences and stressors that infants were not meant to encounter so early in life. Preterm infants are exposed to ongoing medical procedures—blood draws, IV starts, intubations, heel sticks, and countless assessments—that activate the body’s stress-response system during a time when their nervous system is still learning how to organize and regulate itself. The bright lights, constant alarms, temperature changes, and frequent handling, though necessary, create an environment that can be overwhelming for a developing brain.
Inside the womb, they are protected by darkness, warmth, rhythmic sounds, and gentle movements. In contrast, the NICU requires premature infants to adapt suddenly to an environment that is loud, bright, unpredictable, and often, painful. These early sensory experiences can influence how the brain wires itself—particularly in areas related to emotional regulation, attention, sleep, and sensory processing. Research shows that repeated early stress can affect the hypothalamic-pituitary-adrenal (HPA) axis, which helps regulate stress hormones, metabolism, and long-term stress responses. Over time, these early disruptions can contribute to increased sensitivity to stress, challenges with emotion regulation, anxiety, and even differences in how a child responds to sensory input.
This is not to diminish the incredible, life-saving care provided in the NICU, but rather to recognize the profound experiences NICU infants go through. Additionally, it also helps parents understand that the early experiences their infants endured were significant. Understanding this impact can offer clarity around some of the behaviors or challenges that may appear later on—while reminding families that many of these responses come from early biology, not parenting.
The Emotional Toll on Families
The NICU is not just a medical experience—it is an emotional and psychological one as well. Parents often describe it as living in two parallel worlds: the clinical world of monitors, rounds, and shifting stability, and the emotional world of fear, hope, grief, guilt, and love. The alarms, the uncertainty, the separation from their baby, and the inability to protect or comfort them in the way they imagined during pregnancy are profoundly traumatic.
Parents carry memories of critical moments—rushed procedures, sudden desaturations, painful interventions, or days of waiting for answers with them after their infant’s discharge from the NICU. It is not uncommon for NICU parents to experience anxiety, depression, hypervigilance, PTSD symptoms, or ongoing fear about their child’s development and health.
The emotional toll can affect bonding, confidence in parenting, relationships within the family, and how parents interpret their child’s behavior. It’s common for parents to feel on edge or hyperaware long after their infant comes home—not because they’re anxious by nature, but because their earliest parenting experiences required constant vigilance. When we understand this as a trauma response, not a personal flaw, parents can begin to breathe again and trust themselves in new ways. It is completely normal for NICU parents to experience guilt, anger, fear, or a wide range of emotions because of what they endured. Talking with a therapist or mental health professional, when possible, can be incredibly helpful in processing and working through those experiences. If these emotions aren’t addressed, they can make bonding and attachment more difficult—not because of anything a parent did wrong, but because the trauma itself needs care and healing too.
Supporting Preemies Through Family-Centered and Neuroprotective Care
Family-centered care is not simply a philosophy; it is a necessity for NICU infants and their parents. The research is clear—babies do better when their parents are involved, present, and supported in their caregiving role. Skin-to-skin contact, even for brief periods of time, stabilizes the infant’s heart rate and breathing, reduces stress hormones, supports temperature regulation, improves sleep, promotes bonding, and stimulates brain development. For parents, it restores a sense of connection and confidence that are often lost throughout the separation.
Neuroprotective strategies in the NICU help recreate pieces of the womb environment while minimizing unnecessary stress. These include dimming lights, reducing noise, protecting sleep, using gentle handling, bundling or swaddling during procedures, minimizing painful experiences when possible, and practicing cue-based care. These approaches support healthy brain growth, reduce stress responses, and lay the foundation for more regulated behavior, sensory processing, and emotional development.
Equally important is empowering parents to be active members of the care team. When parents are supported, educated, and encouraged to participate in caregiving, they become more confident, connected, and emotionally grounded—benefits that remain with the entire family long after discharge. Family-centered care is truly a partnership that improves outcomes for both infants and their families.
Follow-Up Care and Ongoing Advocacy
Prematurity should be recognized as a lifelong medical consideration, not a condition resolved at discharge or by the age of two. As these infants grow, their early birth can influence everything from growth patterns and developmental milestones to emotional regulation, learning, and long-term health risks. Regular follow-up appointments with pediatricians, developmental specialists, ophthalmologists, neurologists, physical and occupational therapists, and other providers ensure that emerging challenges are identified early, when intervention is most effective.
Parents play a central role in advocacy—not because they have to be medical experts, but because they know their child better than anyone else. Sharing their infant’s NICU history at appointments, monitoring developmental progress, and speaking up when something feels “off” can open doors to resources that change outcomes. This advocacy extends into school settings as well, where children born prematurely may benefit from educational supports, individualized plans, or accommodations that honor their developmental profile.
And while parents cannot rewrite the beginning of their child’s story, they can profoundly shape the rest of it. Early intervention, proactive healthcare, nurturing relationships, and a predictable, supportive environment give former preterm infants the tools they need to grow, adapt, and thrive. It is not about perfection—it is about awareness, responsiveness, and compassion, both for the child and for the parent walking this journey alongside them.
Closing
Prematurity is a lifelong journey—starting at birth and extending through childhood, adolescence, and adulthood. By resharing this episode for Prematurity Awareness Month, I hope to shine a light on the long-term realities families may face and share knowledge that empowers parents to advocate confidently while supporting the caregivers and systems that surround premature infants.
Understanding the lasting effects of prematurity isn’t meant to overwhelm you—it’s meant to equip you. When we know what to watch for, when we recognize why our children may experience certain challenges, and when we feel confident advocating for their needs, we can change their trajectory. We can help them thrive in a way that honors their own unique path.
For NICU care teams, this awareness deepens the commitment to family-centered care and neuroprotection. For extended family and friends, it reinforces the ongoing need for empathy, support, and encouragement. And for parents—especially those still navigating uncertainty—this knowledge becomes a source of clarity and empowerment rather than fear.
Thank you for joining me for this important conversation. And because this information can help so many families feel seen, supported, and empowered, I hope you’ll consider sharing this episode with others during Prematurity Awareness Month.
In the end, the story of prematurity is one of extraordinary resilience—of tiny fighters who defy the odds and parents who discover a strength they never knew they had until they had no other choice. Their courage doesn’t just carry them through the NICU—it carries them forward, lighting the path for every step ahead. That unshakeable love and determination are what carry families through, long after the NICU doors close.
Thank you for joining me for this important conversation and for allowing me to be a part of your journey!
And as always, please consider sharing this episode with someone who may gain some value from it! remember—together, we are stronger!
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