Jean Ashner has worked for the past nine years with an
organization known as Breath of Hope, Inc.
to try and raise awareness about a birth defect that affects 1 in 2,000 live
births. This birth defect is known as Congenital Diaphragmatic Hernia (CDH). For
the 9th year in a row, Ashner has received proclamations making
March 31st Congenital Diaphragmatic Hernia Awareness Day from
Owensville, Gasconade County and Missouri.
CDH is an opening in the diaphragm. The hole allows the
abdominal organs to push into the chest cavity. CDH is a life-threatening birth
defect because it limits the growth of the lungs, according to Breath of Hope
website.
“On January 20, 2007 while at the doctor’s office for my 20
week ultrasound, anticipating the excitement of whether it was to be a boy or a
girl, my son was diagnosed with a congenital diaphragmatic hernia,” Ashner
wrote in her letter to Owensville Mayor John Kamler asking for the
proclamation. “Until that day, I had never heard of a congenital diaphragmatic
hernia. This being my ninth child, I had thought I had heard of most every
possible birth defect there was and was caught completely off guard. Since that
day, I have been telling my story in an effort to raise awareness to the
congenital diaphragmatic hernia birth defect. After finding little to no
information or support, I joined forces with the organization, Breath of Hope,
Inc., which is committed to supporting parents, children, family, members and
friends facing the diagnosis of a congenital diaphragmatic hernia birth defect.
Unfortunately, my son, Luke Matthew Ashner, lost his battle with Congenital
Diaphragmatic Hernia on June 12, 2007 after only eighteen hours, twenty-three
minutes.”
When Ashner first received the diagnosis, she took to the
internet to try and find information about CDH and support for what she was
going through. What she found was that the internet was full of horror stories
or that simply no one knew about the defect. Now she continues to work to raise
awareness as part of her son’s legacy.
“I felt as part of his legacy that I wanted people to
understand and raise awareness and to know there is support out there,” Ashner
said.
Ashner says what makes this birth defect so horrible is that
no one knows what problem the child will have when it is born. As far as the
treatment goes what helps one child may not help another. To this day
approximately 50 percent of all cases result in death.
As part of the Awareness Day on March 31st,
Breath of Hope and Ashner are asking people to wear Turquois. Turquois was
chosen as the color for CDH awareness day because it is a symbol of strength
and resilience.
“These kids are born fighters,” said Ashner. “They have to
fight for everything.”
Ashner wants people to know that they can reach out to her personally and Breath of Hope, Inc. via
Facebook for support and guidance with CDH diagnoses.
