Doctors, Families Rally for Cure for Deadly Birth Defect

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

Saturday, November 2, 2013


Reflection can be painful, but reflection can also be productive. ― Charlotte Pearson

Each year around this time, I always reflect back.  You see, 14 years ago, I had learned of congenital diaphragmatic hernia and knew the unborn baby I was carrying was diagnosed with very severe CDH.  Today is her birthday.  I still have friends who I have known since being diagnosed who also had children who survived and did not survive CDH.  Many of them, I have only known virtually but they have touched my heart in ways some family and friends I have known all my life never could.  You see, our daughter didn’t make it but she did fight the good fight.  Those early years of grief were the worst.  I truly cannot recall much about current events at that time, I was doing a good job just keeping up with the basic things in my life then.  Researching diaphragmatic hernia became my hobby or obsession, not sure which one.   

I’ve looked back on our journey and the basic things Breath of Hope has provided to families are things I felt were needed or not provided during our own journey.  Today, the diagnosis is a bit better if you get to the major hospitals with the experience to take care of these babies.  Today, I know if our daughter was born, she might just be a survivor.  But there are not do-overs or instant replays in this life like that.  I can tell you, I am content today.  I am at peace.  

I reflect back that I never would have chosen to be part of the CDH community but feel today I am privileged to be a member of it.  I also reflect, I would rather have known that beautiful creature for 38 glorious and tragic days then have never had her touch my life at all.  Sometimes our blessings come in disguise.