Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Sunday, March 7, 2010

Why is Awareness for Congenital Diaphragmatic Hernia So Important?

We have told you the facts, five families each and every day have their unborn or newly born child diagnosed in the United States alone.  That of those five families, most never heard of it before that day of diagnoses.  We researched and found that CDH has a rate of occurrence which equals the occurrence of Spina Bifida, Cystic Fibrosis and Congenital Muscular Dystrophy.  It also occurs more often than childhood cancers yet we still have parents contacting us who had never heard of it prior to their child’s diagnoses.
More perplexing is we recently had a parent take their surviving CDH child to a doctor and tell them of their child’s condition and the doctor never heard of it.  They thought CDH was a hospital (there is a hospital).  Now, how frustrating is this, these young children have chronic lung disease due to CDH and should be treated slightly differently than a ‘normal’ child.  The doctor has no idea what a diaphragmatic hernia is.  That the fact this child is surviving is a major miracle that does require their knowledge and experience to be sure they continue to do so.  We imagine this doctor knew of Cystic Fibrosis, Spina Bifida and Muscular Dystrophy.  Not to dispute this particular doctor or any that has not been made aware of this birth defect.  Many more children with CDH are being born today then ten years ago.  Many more are surviving due to the numbers of babies being born with CDH.  Many times during a NICU rotation a resident may not have firsthand knowledge of a diaphragmatic hernia case.  Parents of these babies and the NICUs that care for them will tell you they arrive in “clusters”.  It does not mean that this doctor or any others out there are not good at their work.  They, like many have not been made aware.
When even health professionals who are practicing medicine in this country and others are unaware, we still have work to do.  It isn’t just a day, a month or awareness – it is awareness every day.  The day or month to honor these children and families is a platform.  From that platform we continue to work hard each and every day to support families, educate the general public and inform others of this birth defect.  If a city or a state agrees that this condition deserves a day, it gives us more credibility when we are educating others.  That is the platform.   Why we continue to work to have this day to honor these families and the health professionals who work the front line to save these children and research to one day bring the survival rates to a higher level.  Why we wear Turquoise in unity to make an impactual statement to the world.  Why we continue to raise awareness.  Why we continue to write letters to our Mayors, Governors, Legislators to make this day Congenital Diaphragmatic Hernia Awareness Day.  From that platform we continue to launch awareness, education and support.
*impactual is not a word recognized in the dictionary - however one I use because I believe it should be!

Breath of Hope, Inc. © 2010

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