"Cerebral palsy is primarily a motor impairment so it's really important to look at what the child’s motor function is. Are they developing on the trajectory of a child who has cerebral palsy or are they developing as we would expect a baby to develop? "
When first meeting a parent who's had a child newly diagnosed with cerebral palsy, I really want to try and help them understand their baby. It can be difficult for parents to take it in all at once and many leave that first interview quite overwhelmed, but you're going to meet some really important and helpful people.
It is important to understand the brain injury for each individual person, because they can be really different. Where the injury is can give us important clues to what motor problems that individual will have. The time you have the biggest risk to having a stroke is as a baby, not as an adult so it is important to understand what may be happening in the infants brain.
Receiving early diagnoses or high‐risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
The World Health Organization has developed the ‘International Classification of Function’. This gives us a way to think about any health condition. Here we can see many ideas that we need to think about with CP. We can also see how these many ideas are connected to one another.
There are some medical conditions or events that can happen during pregnancy, delivery, or shortly thereafter that may increase a baby's risk of being born with cerebral palsy.
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.
Children with cerebral palsy experience brain damage around birth or before birth. So the language of the brain in other words, the way they will move, will be different from typical movements. So by looking at their movements, we will understand that there is something that is wrong in the brain.
Diagnosing cerebral palsy (CP) at an early age is important for the long-term outcome of children and their families.
Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest.
Early diagnosis begins with a medical history and involves using neuroimaging, standardized neurological, and standardized motor assessments that indicate congruent abnormal findings indicative of cerebral palsy. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being.
Infants with CP frequently have developmental and motor delays, in which they are slow to reach milestones such as learning to roll over, sit, crawl, or walk. The symptoms of CP differ in type and severity from one person to the next, and may even change in an individual over time.
Cerebral Palsy is the most common motor disability in children caused by abnormal development or damage to the motor area of the brain’s outer layer (called the cerebral cortex), the part of the brain that directs muscle movement. This damage can occur before, during, or shortly after birth.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
What we learned from our defensive lifestyle is that it’s normal to feel this way. It is a lot of information to process all at once and it’s an emotional rollercoaster immediately following a CP diagnosis. We realized that our diagnosis wasn’t what defined our child. She is an amazing little girl who is full of personality, she isn’t a fragile flower that needs to be sheltered, and by realizing this we were able to go on the offensive, and attack the challenges head on.
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
CP is the most common lifelong physical disability. Globally over 17 million people have cerebral palsy.
The specific motor types present in CP are determined by the extent, type, and location of the brain injury.
CP describes a spectrum of conditions that affects individuals in many different ways. Your care team may use the term GMFCS which stands for Gross Motor Function Classification Scale and is used to describe what mobility aids your child may need to complete certain tasks.