| Dana loved to clap, enjoyed making a mess in her room, playing with her friends and getting into some mischief... (See "Where's Dana", Pg 48 in the book) |
| "You knit me together in my mother's womb..." Psalm 139:13 |
| This image was given to us the day after the "protrusion" was found. This was the first time I'd ever heard the word "encephalocele" |
| This one was the first time I saw her face. (If you aren't seeing the image of her face, tilt your head to the right .) |
| "For this child I prayed and the Lord hath given me my petition I asked of Him." I Samuel 1:27 |
| My evidence of Dana's hide-out in the fireplace. (Pg 49) |
| Dana M ichelle R amsey (Christmas 1992) |
| Born: February 26, 1986 Place: Columbia, SC Went to Heaven: November 13, 1993 |
| Dana sat with her legs turned outward. Her doctors called this a "w" position which according to them, was not good for her knees. Nonetheless, it was her preference. (Likely due to balance problems related to her encephalocele). |
Encephaloceles are part of a family of Neural Tube Defects. The most
common of which is Spinabifida. Encephaloceles are more rare. In laymen's
terms, an encephalocele is an opening in the skull. It can occur in the front,
top or back of the skull. (In Dana's case, it was at the base of the skull.) I was
told by my doctors that it develops within the first weeks of pregnancy,
although it can go undetected until the second trimester.
My quest to learn more about encephaloceles is ongoing, but I have learned
a tremendous amount through an online group of parents of children with
Encephalocele (link to this group is on the home page of this website). I am
finally learning more about Dana's condition. Words are inadequate to
express my appreciation to moms who generously share their child's story. At
long last, I see the beautiful faces of children who share Dana's diagnosis and
are living where we once lived. It is like finding family!
Each child is unique due to the complex nature of Encephaloceles and the
fact that they vary in size, location and severity, yet I still see common
characteristics among the children and there are some common symptoms,
behaviors and challenges.
The online statistics are conflicting regarding the rate of occurrence of
Encephaloceles in America. The only agreement I find in my research thus far
is the word, "rare". One site states an occurrence rate of 1 in 40,000 births
in the U.S.; another says 1 in 10,000. ( I recall my doctors saying 1 in 2,000.)
So far, I have not found any research that pinpoints a specific cause,
although most studies suspect a combination of environment and genetics.
(Our geneticist said 95% of children who have an Encephalocele are born to
families with no history of any birth defects. This was the case with us.)
Of interest, South Carolina ranks very high among other states regarding the
rate of occurrence for Neural Tube Defects. One article published in a 1986
medical journal indicates that Lancaster County is a high risk county.
Ironically, I spent much of my childhood in Lancaster, SC. The article gives
no known reason for this increase.
The more I learn, the more I am aware of the miracle of Dana's life. It is my
hope and prayer that the research will continue.
common of which is Spinabifida. Encephaloceles are more rare. In laymen's
terms, an encephalocele is an opening in the skull. It can occur in the front,
top or back of the skull. (In Dana's case, it was at the base of the skull.) I was
told by my doctors that it develops within the first weeks of pregnancy,
although it can go undetected until the second trimester.
My quest to learn more about encephaloceles is ongoing, but I have learned
a tremendous amount through an online group of parents of children with
Encephalocele (link to this group is on the home page of this website). I am
finally learning more about Dana's condition. Words are inadequate to
express my appreciation to moms who generously share their child's story. At
long last, I see the beautiful faces of children who share Dana's diagnosis and
are living where we once lived. It is like finding family!
Each child is unique due to the complex nature of Encephaloceles and the
fact that they vary in size, location and severity, yet I still see common
characteristics among the children and there are some common symptoms,
behaviors and challenges.
The online statistics are conflicting regarding the rate of occurrence of
Encephaloceles in America. The only agreement I find in my research thus far
is the word, "rare". One site states an occurrence rate of 1 in 40,000 births
in the U.S.; another says 1 in 10,000. ( I recall my doctors saying 1 in 2,000.)
So far, I have not found any research that pinpoints a specific cause,
although most studies suspect a combination of environment and genetics.
(Our geneticist said 95% of children who have an Encephalocele are born to
families with no history of any birth defects. This was the case with us.)
Of interest, South Carolina ranks very high among other states regarding the
rate of occurrence for Neural Tube Defects. One article published in a 1986
medical journal indicates that Lancaster County is a high risk county.
Ironically, I spent much of my childhood in Lancaster, SC. The article gives
no known reason for this increase.
The more I learn, the more I am aware of the miracle of Dana's life. It is my
hope and prayer that the research will continue.
| Dana was fascinated by varying textures including tree bark, grass, and sand. She was quite the explorer indoors and out! |
| About Encephaloceles: |
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