Cerebral Palsy: We Fear What We Don’t Know

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Two days after my son Tommy was born we learned he had a serious congenital heart defect. Prior to his diagnosis he had what a young British intern described to my husband as “a bit of a fit.” It was his first seizure and what could have been called a stroke in an adult.

We believe that was his traumatic brain injury that caused his cerebral palsy.

Did you know that cerebral palsy is NOT a disease? You can’t catch it.

What is cerebral palsy (CP)? Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain’s ability to adequately control movement and posture.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.

Tommy didn’t progress physically like other kids but since he was my first child and had such a rough beginning we just thought he was delayed. When he was 14 months old, even after we brought him back to Philadelphia for his one year follow-up at CHOP and his heart got a “looking good” by his cardiologist, he had a massive seizure. Once he was stabilized he was brought to Buffalo Women’s and Children’s Hospital he was diagnosed with a seizure disorder and spastic diplegia.

Did I know spastic diplegia was a form of cerebral palsy? Nope, I did not. Did I know what CP was? Apparently nope, I did not know about that, either. We told our parents and tried hard to explain it to them, too. When it was time to tell my grandmother my mother suggested I actually use the term spastic diplegia rather than CP because she would be afraid of the term CP.

Can cerebral palsy be treated? “Management” is a better word than “treatment.” Management consists of helping the child achieve maximum potential in growth and development. This should be started as early as possible with identification of the very young child who may have a developmental brain disorder. A management program can then be started promptly wherein programs, physicians, therapists, educators, nurses, social workers, and other professionals assist the family as well as the child. Certain medications, surgery, and braces may be used to improve nerve and muscle coordination and prevent or minimize dysfunction.

As individuals mature, they may require support services such as personal assistance services, continuing therapy, educational and vocational training, independent living services, counseling, transportation, recreation/leisure programs, and employment opportunities, all essential to the developing adult. People with cerebral palsy can go to school, have jobs, get married, raise families, and live in homes of their own. Most of all people with cerebral palsy need the opportunity for independence and full inclusion in our society.

We are often afraid of what we don’t know.

Tonight I am attending Niagara Cerebral Palsy‘s Annual Awards Gala. Since Tommy’s death my husband and I sponsor an award given to someone at Niagara Children ETC who lives the mission and shares it with all the students. it is my annual opportunity to thank them for the profound impact the school had on our family and on all of those they serve.

NCP is just another example of why my glass is half full!

Have a yummy and inspired day!

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4 thoughts on “Cerebral Palsy: We Fear What We Don’t Know

  1. You are inspiring, Jude. Maybe your blog should routinely include “food for thought” as well as food for the table.

    Best wishes,

    Mary

  2. Thank you, Monica. Very kind!

    MB…weeeeeeeeee boom! Yes, lovely memory.

    And Mary, “Food For Thought” is truly inspired. Do you think people would enjoy/respond to that?

    Thank you all for taking the time to give me your thoughts…it means a great deal to me!

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