Doctors, Families Rally for Cure for Deadly Birth Defect

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

Tuesday, March 4, 2014

March! It is Congenital Diaphragmatic Hernia Awareness Month!

For seven years families across the United States have been writing their Mayors, Governors and other officials requesting Proclamations to bring awareness for congenital diaphragmatic hernia.  We have always known that from awareness brings more research.  Over the last few decades survival rates have increased from 50% overall to about 67%.  Our NIH is also more involved thanks to the many families who have contacted their legislators and made them aware of this often unheard of birth defect.  It is through the efforts of families and friends who have fundraisers to help families, raise awareness or raise funds for medical research that we educate our communities.  One day we hope families who contact us will have at least heard of CDH prior to their newborn or unborn child being diagnosed.  

This is also a month that many families reflect on the experience of the diagnoses, of when they first became aware of CDH.  To be told your unborn or newborn child may die is not what we expected to hear when we had our ultrasound or gave birth.  Families who have had their child choose wings over feet want to educate others not just in their child’s memory but so others are perhaps more prepared than they.  Those who have a child come home are all too aware of the struggles of taking care of a child with medical needs or if they don’t have them, worried that one of the other accessories which sometimes coincides with CDH will appear.  Some say they “hate” CDH or CDH “sucks”, no argument there it is something battled every day by organizations, hospitals and families.  We hope one day it is more manageable and less mysterious so doctors will not have to tell a family, “we have done all we can do”.  

There is a hidden oasis in the diagnoses, the people and families you meet through the experience are the people you want in your life.  Strangers from across the nation will step up and help when some friends may have bailed on you.  The doctors and nurses we meet on our journey we learn the profession chose them, they go the extra mile and they work hard so all families will bring their babies home.  Their hearts are in it.  

As you reflect on your own awareness this month, also reflect on all the blessings and amazing people who have been brought into your life through CDH.  Congenital Diaphragmatic Hernia is twofold, bad and good – just as life, it is how we roll with it that makes the difference.

If you would like a graphic ribbon with your child’s name on it, as below, please feel free to email or Private Message our Breath of Hope Facebook Page.  It is a pleasure to make these for families – they are yours to use any way you wish and we are happy to enlarge them or provide different file formats if you need them for shirts or printing!