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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Being a Mom Act I (Act II was Mother’s Day)

I know this seems backwards and it’s true, it is.  Act II was written and posted first http://athleticbudgetcoach.com/blog/?p=248 and there is a huge reason for that.  My son Anthony, writing his last finals on May 13, 2010, is my second child.  For me, Mother’s Day is about the living.  It is how I have been able to deal with not having both my sons with me.  Just like the Christmas picture that never was, if I dwell on what I have lost then there is no joy in the day.

Hugging Mother’s Day is the anniversary of my son Tommy’s passing.  May 14th 1988.  Adding insult to considerable injury, May 14, 1989 (his first anniversary) was on Mother’s Day.  See what I mean…can’t dwell…

On July 2, 1984 our first son was born by c-section.  Ouch.  After only a few hours his color did not improve to a vibrant pink and was whisked off to Children’s Hospital in Buffalo after a quick baptismal ceremony held in recovery.

He was diagnosed with Transposition of the Great Arteries (http://www.wisegeek.com/what-is-transposition-of-the-great-arteries.htm) and a VSD.  VERY long story short, we took him to Children’s Hospital in Philadelphia for a successful surgery.

Just a few months after visiting Philadelphia for the year post operative exam (where he looked great) he began having regular seizures.  He didn’t physically develop at age level and was diagnosed with Cerebral Palsy.  We never went more than two months without an in-patient stay at Children’s.  This abnormal experience became part of our normal life. 

 What I describe here is a very sickly child.  He was anything but!  He had an outgoing personality and quick smile.  He had a sense of humor and a twinkle in his eye.  He once negotiated with Santa when he was given a toy at the Christmas party at his school, Niagara Children’s ETC.  It was a yellow plastic school bus.  He told Santa he already had a bus, he wanted a book.

In January 1988 he had a seizure and was in a coma for 3 ½ months. The phone call just before dawn on May 14th is like a distant dream to me today and the years of grief replaced by a life of gratefulness.  I survived what I hope is the very worst period of my life. 

Funny thing is, I am a very happy person and I really appreciate my life.  My husband and I beat the odds and are going to celebrate our 30th wedding anniversary this fall.  He is a past president of the board of directors of Niagara Cerebral Palsy and is also an active member of the Cerebral Palsy of New York State board.  Our second son, Anthony, is a really nice kid.  He works hard and seems to love life like his two parents.  Best of all, he is sensitive to folks with disabilities and carries the essence of his brother in his perfectly healthy heart.

Life is good!

Jude

Twitter: MidMajorMom

Twitter: JudeCaserta

http://www.MidMajorMom.WordPress.com

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