Doctors, Families Rally for Cure for Deadly Birth Defect

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

Thursday, September 4, 2014

Why I dislike the phrase: "I hate CDH." ~ Opinion

Hate, it has caused a lot of problems in the world, but has not solved one yet. ― Maya Angelou

Often times when an innocent infant who battled CDH (congenital diaphragmatic hernia) dies or a CDH survivor undergoes more surgery or becomes ill and is hospitalized we see comments from others:  "I HATE CDH".  Or "CDH SUCKS."  Very true, the complexities of diaphragmatic hernia do cause death and far too often other struggles for the survivors who continue battling.  It is the birth defect that "keeps on giving" in other ways.  There are so many issues that can develop over a hole in the diaphragm.  Digestive issues, due to organs not developing properly, eating issues due to the early treatments these children endure or the simple fact their feeding or attempt to start later.  (There are many other “side-effects” to CDH too.)  Often times the drugs prescribed to them to prevent reflux or manage their Pulmonary Hypertension cause weight loss or pneumonia.  The parents struggle with maintaining weight on these children so if they do have the next illness or surgery, they have reserves. 

I get why parents and family members "hate CDH", our own daughter's death certificate states under "cause of death":  "complications of congenital diaphragmatic hernia".  I also hated it for a long time.  It is a birth defect that sounds so very simple, yet is so complicated.  Five infants can come into a NICU presenting similarly with diaphragmatic hernias, they will treat them all the same way, same protocols, drugs, techniques and one will die, and the medical staff has no real clue to why.  Other than, "complications of diaphragmatic hernia".  Overall the survival rates are rising, slowly.  They do know more today than fifteen years ago, ten years ago or even a year ago.

When I think of CDH, I think of all these children, infants and their families.  I think of the triumphs and tragedies.  I think of how astounding these children are in life and how amazing their families are to motivate, advocate and love them immeasurably.  I think of my own daughter and how courageous her fight was as I sat there and watched, only able to hold her little hand.  I can't hate CDH.  It was part of my daughter and part of these other children.  I dislike what it does to these children and families.  How can I hate something that brought me the most amazing friends who share their deepest tragedies and feelings?  Oh, sure, I am frustrated by CDH.  Hate is a very strong emotion.  It is an emotion that required a whole lot of energy, to which; I refuse to divert my own.  So, I dislike. 

There is also a beauty in the CDH Community.  When a family is going through hell and their child is fighting or has lost the battle or is struggling - all other families (some silently) send a positive thought, prayer, a comment, email, text or phone call.  Unlike on the news media story feeds where you see less than stellar comments, the comments other parents leave for those in a time of need, will make you smile, tear up or both.  The encouragement and hope radiates through these families and that, my friends, is the beauty of CDH (congenital diaphragmatic hernia). 

Note:  This is just an opinion piece and those who are very early in their own CDH journeys are allowed to wrestle with emotions.  I've done that.   ~Elizabeth

Monday, September 1, 2014

Ice Bucket Challenge is for ALS

Recently there has been an amazing viral challenge all over Facebook and the Internet.  Millions have been raised for ALS (amyotrophic lateral sclerosis) with the ALS Challenge and many have been educated about this devastating disease that has no known cure, no known prevention and very little research.  It is also a rare disease, just as congenital diaphragmatic hernia.  Though more are affected by CDH than ALS – we commend them as a rare disease organization for this campaign and hope it not only brings more funding now but in the future too!  We also hope many will step forward and volunteer their time or services too! We also hope answers are found in research! 

Though the ALS Foundation has also had some microscope their financials – we would encourage you to look at the fact that only 7% of their funding ending in January 2014 was for Administration costs.  The goal most nonprofits should make is 25% or less for Administrative costs.  This means that 93% of their revenue went to their programs to help education, support and for medical research.  That is awesome!  

This said, Breath of Hope would encourage anyone who does the “Ice Bucket Challenge” to donate to the ASL Foundation.  This is not our campaign and we refuse to ride on the coattails of another charity while their campaign is in full swing.  That is infringement.  It is just not ethical in any way, shape or form.  We have worked hard with our original ideas too and understand how it is to be the charity with this original campaign – that went viral – and others infringe upon it and create new days or new twists to benefit their charity.  Again, it is unethical.  We have never done this and refuse to infringe on others doing so borderlines corporate fraud.  (We know that is a strong accusation but if you can’t come up with your own campaigns and piggy back off of others, that is exactly what it is!) 

We are working on a campaign for March which will also involve social media – stay tuned!  It will have a different twist – an ORIGINAL twist and we hope to raise awareness of CDH the way the ALS Foundation has raised awareness for ALS! 
Thank you!