Doctors, Families Rally for Cure for Deadly Birth Defect

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

Wednesday, July 21, 2010

Make Congenital Diaphragmatic Hernia Awareness Day 2011 in Your Area!

Every day you live you project congenital diaphragmatic hernia awareness.  Sometimes you do this silently and sometimes very vocally.   You always are aware and you wish all others would be too.

A parent of a child who is surviving this birth defect, your child does something you never thought they would do when they were in the NICU and it brings you to tears.  “I never thought my child would ever color like others”.   You savor every moment and you fear every turn that maybe you will wake from this dream and it will become a nightmare again.

As a parent of an angel who fought valiantly and chose wings, you see signs in the butterflies that land on your nose or the rainbow that suddenly fills the sky when you are at your bluest blue.  Still these babies can make our heart soar.  You savored each moment and treasure your memories.

Both know the real normal is just a setting on the washing machine.  Both were shocked at the news that their infant had this birth defect that when laid out seemed bigger than they would ever be but they both fought like warriors we read of in novels.  That alone makes us pick up and move forward, telling our stories to make others aware.

You tell others to educate them that congenital diaphragmatic hernia happens just as often as spina bifida, cystic fibrosis and congenital muscular dystrophy.  Others have heard of those and know of them but few have still heard of CDH.  Many dismiss it as a “hernia” and ignore the simple fact that still today over all the survival rates are 50%.  You know that 1800 families each year have their child diagnosed just as you did.  You know the fear, helplessness and hope these families go through each and every moment.  You know what they will face.

This is why each year we ask our states and localities to issue a Proclamation for March 31st to be Congenital Diaphragmatic Hernia Awareness Day.  It is a day to celebrate.  It is another day to add to our own children’s birthday or birthday and angel day.  It is a day to have our government officials to acknowledge that this birth defect still needs more education, awareness and more research to improve the survival rates, to lessen the residuals survivors and their families endure.  We need more families to burst into tears when their child jumps for the first time because they once thought they never would.

Each year, more and more people are becoming aware – and it is because of the families who take an hour of their time to sit down, edit a letter and mail it with a sample proclamation and perhaps pictures of their own child.  You then will receive this astounding document an acknowledgment that government works for the people, by the people and for you.  You hold this tangible piece that states you made others aware that may never have been otherwise.  

Please contact us at for a sample letter and proclamation, we will be happy to send them to you and ask all you do, is send us a photo or a scan of the document when you receive it!  When at times you have felt powerless in this journey with congenital diaphragmatic hernia, you have the power to do this!

Wednesday, July 7, 2010

Requesting Funds for Congenital Diaphragmatic Hernia Research & It Will Raise Awareness Too!

One of the most amazing people we know, Shannon, has taken on running in the New York City Marathon on November 7, 2010.  Twenty-six miles representing congenital diaphragmatic hernia awareness through the City of New York.  This marathon is the marathon that all want to run.  They say crossing that finish line in Central Park is like no other accomplishment they ever experienced. 

The New York City Marathon also attracts runners from all over the world, media from all over the world and spectators!  Every cent raised by the runners on TEAM GCDH NYC Marathon will go to Dhreams - Diaphragmatic Hernia Research & Exploration.  The runners are doing this for these children, families and to prove something to themselves - that they can reach from within and accomplish this without quiting - after all, these children are not given that choice.

Your donations are tax-deductible and every cent raised helps!   You can donate at the link above for TEAM GCDH NYC Marathon to any runner or any of the organizations and indicate that the funds are to the NYC Marathon for CDH Research!

Shannon - thank you - and all the other runners too!  Global CDH - thank you for this opportunity and may we all help raise some awareness and some funds for congenital diaphragmatic hernia medical research!

Tuesday, July 6, 2010