This little boy can run well, but walks awkwardly with a characteristic movement pattern of a child with cerebral palsy. If you look for it, there are many children who demonstrate different levels of motor function. I had this graphic developed to capture both of his realities. The important question is, “Which level of function best represents the current status of the brain?”
In my experience, many parents do not know the details of their child’s brain problem. They know terms like PVL or a Grade IV bleed, absence of the corpus callosum or HIE, but each of these terms do not give sufficient information about the extent of damage and more importantly, they do not say what is right about the brain.
I think these are the important questions…
What parts of the brain are undamaged?
What is the age of the child and the potential for recovery?
What can we do to improve the extent of recovery?
Parents and their healthcare team have to understand some very important facts about neuroplasticity.
The first important point is that all human brains have some potential for spontaneous recovery that involves both repair and regrowth of new brain cells. There are techniques, like brain cooling in HIE, that help this process and more are under development. Three R’s of Baby Brain Neuroplasticity
The baby has an advantage over a person with later brain damage as there is exuberant neuroplasticity in the first 4 to 6 years of life. Neuroplasticity is life long, but baby brain neuroplasticity is an added advantage. The results of early hemispherectomy demonstrate just how much reorganization and reallocation of resources is actually available. What Can You Do With Half a Brain?
So, the child who first learns to walk with a damaged, immature brain has the potential of learning better movement patterns with a brain that has had some recovery and is more mature. The normal running pattern tells us that his brain has had great recovery that we can build upon.
We demonstrate this brain potential by careful observation as the child is challenged by novel experiences. Demonstrating Brain Potential
We can help them by providing support to alignment. What Do I Do First?
And we can see rapid change with out of gravity experiences like water exercise with a neutral buoyancy garment like a Wet Vest. Water Exercise for Children with Cerebral Palsy
I would like to hear your experiences of children who do better than was expected in the early days. I feel it is important to give new parents real hope in some of their darkest days.
My daughter suffered what is thought to be in utero HIE. Born with high apgars 7,8,9. Presented with apnea/seizures 12 hours post birth which is how we discovered the severe grade III damage, globally with most severe damage in the left parietal lobe but fair background activity. Neuro told us if she lived past the weekend she’d have little to no quality of life and would likely not see, hear, eat, walk or talk on her own.
Since birth, she has had several weekly therapies and is now four and a half. She has overall motor coordination challenges but is nothing what the doctors told us. She walks, runs, eats, hears, sees, talks. With effort, not without challenges, but with tenacity. She is most delayed in speech but has made amazing progress with Prompt therapy and gone from 8mo speech level to a 2 1/2 expressive speech in a year. Receptively on track.
More than anything she’s not her brain scan. She’s a sweet, funny, lovable little girl. And I’m so so proud of her!
Son born seven weeks early. On accident they found periventricular Leukomalaica, a diagnosis of cerebral palsy at two. Dr said he would never walk, talk, smile and he would ruin my life…I should give him up. The miracle is seven. He skis, golfs, rides a bike, never stops smiling and is a blessing to all who know him. He can talk, swear and back talk better than anyone I know. We never let his label define him. We improvised, and still do to make him do what everyone else does. He brings excitement and enthusiasm to our lives. He doesn’t think he is any different than anyone else. If he wants to do something, he does and he will. The human spirit is more than an X-ray or brain scan.
Dear Jessica, thank you so much for sending in this message. It is an inspiring story and will give hope to many families I wonder if their work is all worth it or not. The human spirit is boundless. Best wishes, Karen Pape