Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com 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