Understanding Cerebral Palsy: Guidance for NICU Families

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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.

March is Cerebral Palsy Awareness Month, and in this episode, we are  holding space for all the families who are facing this diagnosis—whether you may be hearing the term come up as a possibility for your child, processing a new diagnosis at home, or continuing to navigate life with Cerebral Palsy alongside your child.

Today, we will walk through what Cerebral Palsy is, the possible causes—particularly in babies born prematurely or those who have experienced neurological complications like IVH, PVL, or HIE—and how it is typically diagnosed. We will also talk through the types and some of the common early signs of CP, common co-occurring conditions, what management supportive therapy can look like, and what parents can expect when it comes to their child’s prognosis.

If you’re looking for guidance on how to support your child, what questions to bring to your provider, or simply hoping to better understand what lies ahead—this episode is here to offer information, reassurance, and connection. My hope is that it helps you feel a little more grounded, points you toward helpful resources, and reminds you that you don’t have to walk this journey alone.

Whether you are a NICU parent, a healthcare provider, or simply someone hoping to learn more, today’s episode is designed to shed light on these impacts and offer a sense of understanding, connection, and hope.

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Episode 67

What is Cerebral Palsy?

March is Cerebral Palsy Awareness Month, so today we’re taking time to recognize, understand, and support the many families whose children have been diagnosed with Cerebral Palsy, or CP.

Let’s start with what it actually means: “Cerebral” refers to the brain, and “palsy” refers to weakness or problems with using the muscles. So Cerebral Palsy is a group of disorders that affect movement, muscle tone, and posture.

It’s the most common motor disability in childhood, and while it affects each child differently, it’s important to understand that CP isn’t progressive—it doesn’t get worse over time. However, symptoms may shift as a child grows, especially during key developmental stages.

Causes and Risk Factors

Cerebral Palsy is caused by abnormal brain development or damage to the developing brain—and that injury affects the child’s ability to control their muscles. There are several ways this can happen, and it is important to understand some of the potential possibilities because it may help bring some clarity during what is often an uncertain and emotional time.

For many years, people believed that CP was mostly the result of a lack of oxygen during birth. But we now know that this actually accounts for only a small number of cases.

Most children with CP—about 85 to 90%—have what’s called congenital CP. This means the brain injury or abnormal development happened before birth, during birth, or shortly after—at a time when the brain is still rapidly developing.

This can sometimes this can be linked to:

• A stroke before birth
• Infections during pregnancy like cytomegalovirus (CMV) or toxoplasmosis
• Premature birth, which can make the brain more vulnerable – 
• Conditions that affect the pregnancy like preeclampsia, or infections that affect the placenta, or amniotic fluid. 
• Substance use by pregnant women
• Multiple pregnancy with twins, triplets, etc.
• Or complications during labor and delivery

Unfortunately, in many cases, the exact cause is never known, which can feel really frustrating as a parent. It’s completely natural to want answers—and although it’s not always possible to pinpoint exactly why this happened, please be kind to yourself. These situations are often out of anyone’s control.

There’s also a smaller group of children—around 10 to 15%—who develop what’s called acquired CP. This type occurs after the first 28 days of life, often due to a serious infection like meningitis, or a traumatic brain injury. 

But what places premature infants at an increased risk of developing cerebral palsy? Why are their developing brains so vulnerable during those early days?

When a baby is born very prematurely, their brain is still in a critical stage of development—and that means it’s more vulnerable to injury.

Research has consistently shown that the earlier a baby is born, the greater their risk for developing Cerebral Palsy. In fact, a 2021 study by Chen and colleagues found that while complications like breathing problems and infections do play a role, they only explain part of that increased risk—especially in babies born very early. 

One of the biggest challenges for premature infants is regulating blood flow and oxygen to the brain. Their very small blood vessels are fragile, and under stress—like from poor lung function or changes in carbon dioxide levels which are common in extremely premature infants—the vessels can bleed or become damaged.

In the NICU, we monitor extremely preterm infants for two specific types of brain injuries that can increase the risk for Cerebral Palsy:

1. Intraventricular Hemorrhage (IVH) 
2. Periventricular Leukomalacia (PVL)

Intraventricular Hemorrhage (IVH) and Periventricular Leukomalacia (PVL)

Intraventricular Hemorrhage, or IVH, is a type of bleeding that happens in or around the brain’s ventricles—these are the spaces in the brain where cerebrospinal fluid (CSF) is made and flows. As I mentioned, this kind of bleeding is common in premature babies because the blood vessels in their brains are very delicate—especially when they experience stress, changes in blood pressure, or problems with oxygen levels.

IVH is typically graded on a scale from 1 to 4, with grade 1 being the least severe, and grade 4 being the most significant. While some mild cases may resolve on their own without long-term effects, more severe bleeding—especially grade 3 or 4—can increase the risk of long-term developmental challenges, including cerebral palsy.

Periventricular Leukomalacia, or PVL, is a type of brain injury that happens when the white matter around the brain’s ventricles becomes damaged. The white matter in the brain helps carry messages from the brain to the rest of the body—especially to the muscles that control movement.

In babies—especially those born very premature—this white matter is extremely fragile. If there’s a decrease in blood flow or oxygen to that area, the tissue can become injured or damaged, and in some cases, the affected cells may die. This damage can interrupt how the brain communicates with the muscles, which is why PVL is closely linked to movement challenges, particularly in the legs.

PVL does not typically show up right away, but it can sometimes be seen on a head ultrasound or MRI. And while having PVL increases the risk of cerebral palsy, especially in premature infants, it is important to remember that every baby is different—some may go on to have only mild effects, while others may face more significant challenges.

The ventricles and white matter in the brain are especially important because the brain pathways that control movement—particularly leg movement—pass right through them. That’s why injuries like PVL or severe IVH can raise the risk for movement difficulties later on.

However—and this is important—an infant that is diagnosed with either IVH or PVL does not automatically mean a child will be diagnosed with CP. Cerebral Palsy is not diagnosed right away, especially not during the neonatal period. Instead, the diagnosis is made only if a child shows ongoing difficulties with movement that do not seem to improve over time as they grow and develop.

And even then, the extent of the brain injury does not always match how a child will be affected. Some children with significant PVL may have only mild movement issues, while others with smaller injuries may face more challenges.

Hypoxic Ischemic Encephalopathy (HIE)

Another condition that can increase a baby’s risk of developing Cerebral Palsy is something called Hypoxic-Ischemic Encephalopathy, or HIE. This is a type of brain injury that happens when a baby’s brain does not get enough oxygen or blood flow around the time of birth.

HIE can occur for a variety of reasons—like complications during delivery, problems with the placenta, or issues with the baby’s heart or lungs that affect how well oxygen gets to the brain. When the brain is deprived of oxygen, even for a short time, certain areas—especially those involved in controlling movement—can be affected.

One treatment that may be used in the first hours of life for babies with moderate to severe HIE is called therapeutic hypothermia, or cooling. This therapy involves gently lowering the baby’s body temperature to help protect the brain. The goal is to slow the death of brain cells and limit the amount of lasting damage by preventing the release of harmful substances in the brain that can cause additional injury.

Studies have shown that babies who receive hypothermia treatment after experiencing moderate to severe HIE often have better outcomes than those who do not. While it’s not a cure, it can reduce the severity of long-term complications in some infants and is now a standard part of care in many NICUs. 

For additional information on HIE—and to hear personal stories from two incredible families affected by it—I encourage you to check out two of our earlier episodes. In Episode 9: Living Your Best Life with HIE, you’ll hear about finding hope and strength in the journey and the amazing work being done by the organization Hope for HIE, which offers education, support, and a sense of community for families navigating this diagnosis.

And in Episode 29: Life Beyond HIE: A Mother’s Journey of Growth and Giving Back, we share one mom’s powerful story of healing and advocacy.

Now, just like with IVH and PVL, not every baby with HIE will go on to develop Cerebral Palsy. But because of the nature and location of the injury, babies with HIE are closely monitored for any early signs of motor delays or muscle tone differences as they grow.

Early diagnosis and supportive therapies can make a meaningful difference, and care teams follow these babies very closely through neonatal follow-up programs and early intervention services.

What we’ve learned is that every baby is different. Imaging like a head ultrasound, but more specifically a MRI can give us clues, but they cannot predict everything. That’s why close developmental follow-up, early, and regular therapy are so important after discharge—especially for babies who were born very early or diagnosed with HIE.

Types and Classifications of Cerebral Palsy

Let’s talk a bit about how Cerebral Palsy is categorized, since symptoms can look very different depending on the type and which parts of the body are affected. There are a few different types of Cerebral Palsy, and each one can affect children in different ways. The main types are Spastic, Dyskinetic, Ataxic, and Mixed. The most common type is spastic CP, which involves muscles becoming stiff or tight, making movement more difficult. Another type is dyskinetic CP, which involves involuntary movements, often twisting or repetitive. Ataxic CP is less common and mainly affects balance and coordination. Now some children may also have a mixed type, which means they show features of more than one kind of CP.

Experts also describe CP by subtypes based on what part of the body is affected the most.  If the stiffness or involuntary movements only affect one side of the body—it is called hemiplegia; if it involves both legs, it is known as diplegia, or all four limbs, it will be referred to as quadriplegia. Most former premature infants diagnosed with CP tend to have spastic diplegia. In this form, there’s an involuntary increase in muscle tone—meaning tightness or stiffness—primarily in the limbs, with the legs and feet more commonly affected than the arms or hands. While children with spastic diplegia may still have some challenges with hand function, the movement difficulties are typically more noticeable in the legs, often impacting their ability to crawl, stand, or walk.

Early Symptoms of Cerebral Palsy

As a parent, you may start to notice certain signs in your baby that raise questions or concerns about their development. While every child grows at their own pace, there are some early signs that might suggest a need for further evaluation, including those associated with Cerebral Palsy. 

While many symptoms relate to movement, others can affect appearance, behavior, or overall development. Some non-movement signs can include differences in head size, such as an unusually small head (microcephaly) or a larger-than-average head (macrocephaly), frequent irritability, or a noticeable lack of interaction or responsiveness to people and surroundings. Early low muscle tone, known as hypotonia, can give the baby a “floppy” appearance—though this may later shift to stiffness or tightness as the child grows. Developmental delays are also common, especially with motor milestones, but other areas like communication or play can be affected too. Movement-related symptoms might include stiffness in the arms and legs (spasticity), uncoordinated or jerky movements, slow or writhing motions, flinging or fidgety movements, or even sudden spasms that cause the child to hold an unusual or uncomfortable posture, known as dystonia. These signs can look different in every child, and often become more noticeable as a baby grows and begins to miss or struggle with expected milestones.

These symptoms can look different in every baby, and just because your infant may show one or more of the aforementioned signs, it does not automatically mean they have Cerebral Palsy. As I shared earlier, the diagnosis is typically made only when a child shows ongoing difficulties with movement that do not improve as they grow and develop. As a parent, if you ever have concerns about your baby’s development, trust your instincts and speak with your child’s primary healthcare provider. I am always a strong proponent of advocating for your child, so please don’t hesitate to bring up any questions or concerns you have—no matter how small they may seem. If you do not feel like they are appropriately addressing your concerns, then speak with a different provider.

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Diagnosis of Cerebral Palsy

Diagnosing Cerebral Palsy is not always straightforward—especially in the first year of a baby’s life. This is because the signs can be subtle, and many of the earliest indicators are things that most parents would not even know to look for. Although many of the early signs can be subtle and not obvious to parents, healthcare providers are trained to look for them during routine visits, even when they’re not obvious yet. 

Although a provider might suspect CP before a baby turns one, they often wait to make an official diagnosis until around 18 to 24 months of age. The postponement of the diagnosis is because babies, especially those born prematurely, go through a period of rapid development and recovery during that time. A baby may start out with low muscle tone—appearing floppy—and then gradually develop increased tone or stiffness, which is more typical of spastic CP. But early on, their tone may appear normal, making it hard to tell whether the baby is just healing or beginning to show signs of a long-term motor issue.

This timing can vary a lot from one child to another. For this reason, it’s not unusual for a child with milder symptoms of CP to not be diagnosed until after their second birthday. On the other hand, more severe cases—where the movement difficulties are more obvious—may be diagnosed earlier.

Healthcare providers use a combination of neurological exams, developmental assessments, and imaging—like MRIs—to help guide the diagnosis, but they often want to be as certain as possible before labeling something that may still improve with time. If a child shows other symptoms, more tests might be done to rule out other conditions. But because CP is a permanent diagnosis, providers often want to be as certain as possible before labeling something that might still resolve.

Every baby is different, and that’s why close follow-up and early developmental monitoring are so important.

Common Complications of Cerebral Palsy

Cerebral Palsy does not just affect movement—it often occurs alongside other conditions that impact a child’s development and daily life. These co-occurring challenges are sometimes caused by the same brain injury that led to the CP diagnosis.

Some of the most common complications include seizures or epilepsy, intellectual disabilities, difficulties with communication, vision or hearing problems, feeding challenges, joint and bone issues, muscle tightness, and changes in the spine like scoliosis. Children with CP may also experience behavioral or emotional challenges, including anxiety or depression.

It’s also important to know that Cerebral Palsy doesn’t always affect intelligence. Many individuals with CP have typical cognitive abilities, even if they experience challenges with speech or communication.

Management and Treatment of Cerebral Palsy

While Cerebral Palsy is not curable, there are many ways to manage the symptoms and improve a child’s quality of life. Treatment plans are personalized based on each child’s needs, and they often involve a team of specialists working together with the family. This might include neurologists, therapists, orthopedic specialists, developmental pediatricians, mental health providers, and social workers.

Treatment options can include:

• Medications to reduce muscle stiffness, manage seizures, or support mental health
• Surgery to address muscle spasms, joint or spine problems, or deliver medications through implanted pumps
• Physical and occupational therapy to help children gain strength, mobility, and independence in their daily activities
• Speech therapy for children who have trouble speaking or communicating
• Mental health support to help manage emotional challenges and promote overall well-being
• Educational and social work support to ensure children and families have access to resources, services, and accommodations as needed

If your child is under three, Early Intervention programs—available in every state—can provide therapies like physical, occupational, and speech therapy, often at no cost to families. You don’t need to wait for a diagnosis to get started.

There is not a “one-size-fits-all” approach with CP – nor one single treatment that works best for every child. This highlights the reason why early identification, a thoughtful treatment plan, and family-centered care are all so important. When treatment begins early and is tailored to the child’s individual strengths and needs, it can make a meaningful difference in helping them reach their full potential.

 

Prognosis and Outlook

Although Cerebral Palsy is a lifelong condition, each child’s outlook—or prognosis—can look very different, depending on the type and severity of their symptoms. In some cases, there may be more complex needs and health challenges to navigate, which can sometimes impact long-term health outcomes.

With the advancements in medical care, therapies, and technology, many children with CP— even those with moderate or severe forms—are living longer, healthier, and more fulfilling lives than ever before.

When a child is first diagnosed, it’s completely natural for parents to ask, ‘What will my child’s future look like?’ Questions like ‘Will my child be able to walk?’ or ‘Will they have other disabilities?’ are some of the most common, and they come from a place of deep love and hope. It’s important to remember that a child’s prognosis can evolve over time. With the right support and therapies, many children make progress beyond what was initially expected, reaching milestones in their own time and in their own way.

Healthcare providers determine a child’s prognosis by carefully observing their motor skills, reflexes, and developmental milestones over time. They use that information to make the best prediction they can—but it’s just that: a prediction. Early intervention, ongoing therapy, a healthy lifestyle, and a strong support system can all play a major role in improving a child’s overall function and quality of life.

If you’re wondering what to expect in your child’s journey with CP, remember that your child’s care team is there to support you, answer questions, and guide you through it step by step. While no two children with CP follow the same path, many families find that with the right support, their child continues to grow, learn, and thrive as they reach their own milestones and discover what’s possible for them.

Support for Parents and Families

Cerebral Palsy can be a complex and sometimes overwhelming diagnosis—not just because of what it means medically, but because of the emotions that come with it. You might be grieving the future you imagined for your child, navigating uncertainty, or simply doing your best to manage everything being asked of you. I want you to know that however you’re feeling—frustrated, anxious, hopeful, exhausted—it’s all valid.

It is so important to remember that caring for a child with CP does not just mean focusing on their therapy schedules, appointments, or medical needs. Your emotional well-being—as a parent, as a caregiver, as a family—is just as important. You deserve support too. Whether that means leaning on loved ones, joining a parent support group, talking with a therapist, or simply finding a space where you feel seen and heard, prioritizing your own care is not selfish—it’s essential.

With strong support systems, compassionate providers, and a loving, informed family, children with CP can absolutely thrive. They can grow, learn, connect, and live full, meaningful lives. And the more supported you feel along the way, the better equipped you’ll be to support them. You are not alone in this.

Questions to Ask Your Child’s Healthcare Provider

Just as I encourage NICU parents to ask questions and stay actively involved in their baby’s care, I believe the same is true for any parent whose child has a medical condition—including Cerebral Palsy. Being equipped with the right questions helps you gather valuable information, understand your child’s needs, and become the most confident and effective advocate for them.

The Cleveland Clinic’s website on Cerebral Palsy offers some helpful questions to start with, and I’ve added a few more that I think can guide conversations with your child’s healthcare team:

• How severe is the brain injury or damage?
• What abilities does it affect, and how might that change as my child grows?
• Are there any other conditions occurring alongside or as a result of my child’s CP?
• What kind of treatments could help my child in the short term—and long term?
• What kinds of supportive services, assistive technology, or therapies might be beneficial for my child?
• What symptoms or signs should I watch for that might indicate a serious or urgent problem?
• How often should my child be seen for follow-up care, and what specialists should be involved?
• What developmental milestones should we monitor closely?
• Are there local resources, support groups, or educational services you recommend?
• What should we expect in terms of long-term care and planning?

And most importantly—never hesitate to ask, ‘Can you explain that in a different way?’ or ‘What does that mean for my child?’ Your care team is there to help, and no question is too small when it comes to your child’s health and future.

Resources for Families Impacted by Cerebral Palsy

If your child has been diagnosed with Cerebral Palsy, or you’re just beginning to explore that possibility, know that you’re not alone. There are some wonderful organizations that offer reliable information, community, and support. Feel free to explore and connect with the ones that best support your family’s needs.

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Closing

Cerebral Palsy is a lifelong condition, but it is not the whole story. It’s one part of your child—and one part of your parenting journey. With early support, a collaborative care team, and access to therapies and resources, your child can continue to learn, grow, and thrive. Their diagnosis may shape the path, but it does not define their potential.

Throughout this episode, we’ve covered what CP is, why it occurs—especially in premature infants and those with brain injuries—how it’s diagnosed, what symptoms to look for, the types of CP, and what treatment and long-term support can look like. We have also talked about the emotional impact that can come with a CP diagnosis—and how important it is to feel empowered as an advocate for your child. 

But just as importantly, I want to remind you that your well-being matters too. Taking care of your emotional health, finding support from others who understand, and giving yourself grace along the way are not just helpful—they are essential. You are your child’s safe place, their biggest cheerleader, and their strongest voice. And when you feel supported, you can continue to show up with strength, love, and hope—one step at a time.

Please consider sharing this episode with another NICU parent or caregiver if it helped you feel more informed or gave you some reassurance. You never know who may need it. Thank you for letting me walk alongside you today. You are not alone, and your voice—and your advocacy—matters more than you know.

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References

Centers for Disease Control and Prevention. (2022). Cerebral palsy (CP). U.S. Department of Health & Human Services. https://www.cdc.gov/ncbddd/cp/index.html

Cerebral Palsy Guide. (n.d.). Cerebral palsy information for families and caregivers. https://www.cerebralpalsyguide.com/

Chen, R., Sjölander, A., Johansson, S., Lu, D., Razaz, N., Tedroff, K., Villamor, E., & Cnattingius, S. (2021). Impact of gestational age on risk of cerebral palsy: Unravelling the role of neonatal morbidity. International Journal of Epidemiology, 50(6), 1852–1863. https://doi.org/10.1093/ije/dyab131

Cleveland Clinic. (2023). Cerebral palsy: Symptoms, causes, treatments. https://my.clevelandclinic.org/health/diseases/6004-cerebral-palsy

Emory University School of Medicine. (n.d.). Motor impairment associated with neurological injury in premature infants. Department of Pediatrics, Division of Neonatology. https://med.emory.edu/departments/pediatrics/divisions/neonatology/dpc/cp-mx.html

Remember, once empowered with knowledge, you have the ability to change the course.