Care of Children with Complex Cerebral Palsy
Caring for children with complex cerebral palsy requires skilled management
Children with complex cerebral palsy (CP) are an important group of children within the population of children who have CP and caring for them requires skilled management. Practicing physicians and related clinicians need support in meeting the challenges of assessment, care and management for children with complex manifestations of CP.
CP is a common condition of childhood, occurring with a prevalence of approximately 2 per thousand live births. It is a group of heterogeneous and complex disorders. It is the particular constellation of motor abnormalities, functional limitations, associated cognitive and sensory impairments, and secondary medical conditions belonging to each child that require thoughtful assessment by the clinician. Precise data regarding the prevalence of children with complex CP is not available.
What does “complex” really mean in this context?
Children with medical complexity are defined as those who have chronic medical conditions often involving multiple systems, who have functional impairment and are often medically fragile or technology dependent. They are frequently high utilizers of medical resources.
Some might prefer to use the term “severe” rather than “complex” CP and it is still in common parlance and the label of “medical complexity” is relatively new. Complexity both encompasses severity and extends beyond it.
In general, children with complex CP cannot walk unaided or independently. In the professional vernacular, this refers to the care of children in Gross Motor Function Classification System (GMFCS) groups III, IV and V. However, it is important to recognize that children with less profound neuromotor impairment at times can be quite complex as well, with significant intertwining needs.
This definition of complexity thus encompasses a fairly broad and diverse group of children. The child with normal intelligence, communication, and oral motor skills with fair hand function who can walk indoors with a walker and manage a motorized wheelchair with a joy-stick in the community is quite different from the child with severe intellectual disability, impaired communication, exclusive gastrostomy feeding, and no independent mobility.
The latter child is much more likely to have associated medical morbidities and even early mortality. However, all such children are complex and tend to represent outliers to the primary care physician or consulting pediatrician in that they are relatively uncommon in the general pediatric population and thus are not a familiar part of the typical physician’s repertoire.
The voices of parents of children with CP
“When my triplets were born, three teams of medical professionals whisked them away before I could even lay eyes on them. And so in a moment, I had to learn to trust others with the well-being of my children. I had no idea how necessary this lesson would prove in the life of our family.
When the boys were nine months old, I asked their occupational therapist why she was working so hard to get them to grab beads rather than working on sitting up – a skill I desperately wanted them to learn. I was crying as I asked, petrified of what her answer would be. I will never forget how, with tears streaming down her own cheeks, she gently told me they had to reach across midline before we could hope for them to reach any further milestones. Her tears were a gift to me that day because I needed to know she cared for my children with a passion and that she valued being on our team.
For 21 years, we have had nurses, doctors, therapists and surgeons at birthday parties, theatre performances, and even high school graduations because these professionals, who have so expertly cared for our children, are on our family team, in our circle of supporters. They are our hand-holders and cheerleaders. We are ever grateful.
Yes, you are on the frontlines of your patients’ medical care. But more importantly, to the parents of a child with complex cerebral palsy, you are on the frontlines of hope.”
Caring for children with complex forms of CP is a rich and rewarding experience
Caring for children with complex forms of CP is a rich and rewarding experience. It also demands breadth of medical knowledge and management of issues that fall outside of the traditional medical box. The former includes many predictable medical, neurologic, orthopedic, and functional concerns. The latter includes things such as helping families through the loss of having a “typical” child, living with the uncertainty of complicating factors, addressing the frustration of accessing much needed services, managing chronic pain, and more.
Partnering with families and children
The voices of parents of children with CP provide unique and critical wisdom for clinicians providing family-centered care, an essential practice in managing children with complex CP.
By partnering with families and children, we can anticipate and identify concerns that may require evaluation or management. We can more effectively respond to acute issues if we have a knowledge of risk factors for an individual patient. We can advocate for our patients so that they receive the most robust services to help them achieve their potential. And in playing each of these roles in support of children with complex CP and their families, we get to know them well.
The rewards are sharing in their triumphs large and small, and professional moments to savor.
* Excerpted from the book Children and Youth with Complex Cerebral Palsy: Care and Management edited by Laurie Glader and Richard Stevenson.
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