Early Signs and Support for Cerebral Palsy: Guidance for Parents from the
Neonatal Follow-Up Team

Premature birth increases the risk for various medical conditions, including cerebral palsy (CP). Preterm babies often face developmental challenges due to their incomplete physical and nervous system development, which can lead to complications like breathing difficulties and increased susceptibility to infections. Although not all preterm babies will develop CP, a significant proportion of children with CP are born prematurely. Cerebral Palsy in the preterm population is generally the result of a brain injury. This injury may be cause by bleeding (hemorrhage) or reduced blood supply (ischemia) within the brain. Rates decrease significantly with increasing gestational age according to The Canadian Neonatal Follow-Up Network (CNFUN).(https://canadianneonatalfollowup.ca/) Source (https://www.cerebralpalsy.org/about-cerebral-palsy/risk-factors/premature-birth)

In babies younger than 6 months corrected age, possible symptoms of cerebral palsy may include: • By about 4-6 months corrected age, the baby is still having difficulty keeping their head in midline lying on their back or when being held upright • When holding their baby ( between 4-6 months corrected age), the parents sense that they still need to hold their baby with a lot of trunk support. They tend to keep their hands high up on the trunk (under the armpits). • When changing the diaper, it can feel difficult to open their legs. There seems to be some resistance through the thighs when wiping or placing the diaper. • One side (arm and leg) of the body tends to move differently than the other side. One side of the body tends to move freely while the other side appears to be a bit stiffer with less frequency and less variety of movement.   In babies older than 6 months corrected age, symptoms may include: • being unable to roll either from tummy to back and back to tummy • tends to consistently roll only over one side of the body • unable to move forward even on their tummy • unable to sit even when placed and with their hands on the floor for support (propped sitting) • by 9-10 months corrected age they are unable to sit independently • unable to bring their hands to their mouth • difficulty bringing their hands together and opening their fingers • tend to reach with one hand only while the other may remain fisted ( parent may already feel that the baby is right or left handed)   in babies older than 10 months corrected age, symptoms may include: • they are unable to sit independently • there is no crawling or forward mobility on the floor • crawling on their tummy while using one hand and leg while dragging the opposite hand and leg • on their hands and knees, they tend to hop forward keeping  their knees together rather than alternating legs • have not attempted to rise to stand and even when placed in stand at a support they are unable to maintain this position • they continue to prefer to use one hand over the other A note on corrected age: This is the age of the baby if they had been born on their due date. For example, if according to their birth date they are 4 months old but they were born 8 weeks early, they would then be 2 months corrected age. All areas of development are calculated according to the corrected age until approximately 18 months to 2 years of age. For the babies who were born very preterm, the use of the corrected age may be extended when calculating their developmental milestones.

A baby’s early years are crucial for neurodevelopment, and early diagnosis and treatment of cerebral palsy (CP) can help maximize a baby’s development. If there is a concern for CP, your neonatal team will continue to monitor your baby and can do the following: • Review the pregnancy and the baby’s medical history and perform a physical examination. • Assess baby’s development and motor skills using tools such as the Hammersmith Infant Neurological Exam (HINE) and the General Movements Assessment (GMA). These tools can be used in babies as young as 2 months corrected age, the earliest optimal age to use either of these assessments is 3 months corrected age. These tools for assessment are a Canadian innovation.

The healthcare team will tailor a specific plan for your child, which may include: • Referral to a specialist • Targeted early intervention and support with: Therapies that can help improve motor skills and physical development, such as physical and occupational therapy. Speech therapy can assist with feeding issues and eventually speech and language if needed. Referrals to the various therapies can be done through in-home community programs and Children’s Treatment Centres. • Private therapy services: Many insurance companies fund physiotherapy so if the family has extended health insurance this may be a possibility. • Early Intervention programmes: These programmes are easily accessible in all regions. The staff provide expertise in all areas of early childhood development. They can be an excellent support system and can work in conjunction with the therapists involved in your child’s care.

• Ask Questions – Your Neonatal Follow-up Clinic team is there for you. If you have concerns or the clinic has expressed concerns, ensure that referrals to services within your community have been made. There is no downside to activating these support systems early. • Work with your early intervention team – This will support your child’s development. Remember as a parent, you are part of the team! • Build your Support Network – Connect with other parents, support groups.(https://www.cpbf-fbpc.org/peer-support-for-nicu-families)

Take a breath. It’s okay to feel overwhelmed. Give yourself space to process. You're not alone—there is a supportive community and resources.   If your Clinic offers a follow-up visit or phone call after delivering the diagnosis, take them up on it! Set a date and time! If the clinic did not offer a follow-up visit, call someone on the team to determine if this may be a possibility. Many questions, concerns and ideas will arise over the next several days as you think about the news that you have received.   Ensure that services for your child are in place. Be sure that all necessary referrals have been made and/or appropriate therapies have started.   Next and equally as important, seek support for yourself and your family. Join our Parent Support Group (https://www.facebook.com/groups/565569783576157)link here or the PAL facebook group.(https://www.facebook.com/groups/173295489470728)

Yes. Every parent processes a diagnosis differently. Grieving, uncertainty, even anger or confusion, are all part of this journey. These emotions can change day to day and even over the different stages of your child’s development. This is totally normal and to be expected. Give yourself and your family time!

Focus on your child as a whole person, not just their CP. Build routines that include fun, tradition, connection, and joy. Small everyday moments—like laughing together or spending time without just focusing on therapy. In other words, Focus on the “F-words in Child Development ". The F-words are: Functioning, Family, Fitness, Fun, Friends and Future. These words and thoughts apply to all ages and all children.   https://canchild.ca/research-in-practice/f-words-in-childhood-disability/(https://canchild.ca/research-in-practice/f-words-in-childhood-disability/)   Reference: Rosenbaum P and Gorter JW. The ‘F-words in childhood disability: I swear this is how we should think! Child: care, health and development. 2011.38,4,457-463.

Recognise that some things are beyond your control and focus on what you can influence: your child’s enjoyment and learning through play. Make those therapy suggestions fun!! Remember as your child gains new skills, celebrate these accomplishments as that skill is now theirs to keep! Reflect on your own growth as your child’s advocate. Take time to appreciate how much you have learned, how you have adapted and how creative you have become!

The best approach should be a partnership between yourself as the parent and the therapist and/or doctor. You are a key member of this team as you are the expert of your child! There should be collaboration between you and your medical team. You are both providing important information about your child. You, as the parent, should be involved in setting goals, planning and implementing the intervention strategies, and finally reflecting and providing feedback (what is working and what is not) while receiving support from the clinicians. If you feel that you are not “being heard or respected” then you should discuss this with the team. If this is not successful, then you may have to seek new and different members for your team that are willing to be collaborative. In this way you are becoming a strong advocate for yourself, your child and your family.   Reference: Ziegler SA and Hadders-Algra M. Coaching approaches in early intervention and paediatric rehabilitation. Dev Med Child Neurol 2020, 62: 569-574

Advocacy is a learning curve. You’ll grow more confident over time. Start by observing your child, asking questions, and connecting with other parents. You don’t have to do everything at once. Your insight will become one of the most valuable tools in your child’s care.

Absolutely. Seeking support—whether it’s therapy, parent groups, or simply honest conversations—is healthy. You deserve care too. A stronger, more supported you is the best gift you can give your child.

Try to provide some consistent (daily) uninterrupted “together” time with each of your other children. It may only be for a short period of time (10-15 mins). Allow each of them to choose their own preferred activity. Spending dedicated time with you is what counts! If necessary reach out to sibling support groups, other trusted adults or therapists to help them understand, process and express their feelings about their sibling. There are also many books for siblings that can be used as a pathway to conversations about their brother or sister.