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Louie, born 2009

Our son, Louie, was born on May 19, 2009. He was a happy little boy but he never nursed as well as my daughter and persistently had cold feet. When he was 11months old we took him to the emergency room at our local hospital with wheezing and respiratory distress. There he was given a breathing treatment and sent home with a prescription for prednisone.


He had several more respiratory issues over the next few months and finally ended up at St. Louis Children’s Hospital on December 8, 2010. Louie was admitted that night with Pneumonia. That's the night our lives changed forever. An Intern and the Resident doctor came in to listen to my baby's lungs while he was sleeping; the intern asked me if I had every been told he had a heart murmur. He was 19 months old. I knew right then that something was not right. He was scheduled for an echocardiogram the next day. That afternoon my worst fears were confirmed he was diagnoses with Aortic Coarctation, Bicuspid Aortic Valve and Patent Foramen Ovale.


At 21 months old he had an Aortic Coarctation repair. Today, Louie is doing well; although, he still has some issues with hypertension. I am an adult cardiac nurse; my specialty is renal cardiac patients. The term "I know too much" is an understatement, but it is also a blessing I am grateful for everyday. But I cannot help but think about what could have happen if he was not diagnosed when he was. I thank God everyday my son was admitted with pneumonia and for the doctor who listened so close and heard something so many others had missed. Not only am I bothered by the past, but I worry about the "what if’s". Not if it reoccurs so much; but the complications that are life long. I want My son to be a happy, healthy child with as normal of a life as possible.


Now it seems that everyone outside of our household acts as if nothing happened and everything is alright. Because of my background, I know that it will never be "alright." No one else understands the mental anguish and stress that we are constantly under. We've completely changed our lives to accommodate and embrace this issue and pray that it never becomes a problem. It has had great benefits. A heart healthy diet has helped my husband and I go from being at risk for weight-related health problems to looking and feeling great. However, the nagging feeling that something might happen to Louie is, and always will be there.


I would like to get in touch with someone who understands that I am so grateful for my son, and that his heart issues were found when they were. I could use someone to talk to if there is anyone who, like me, just needs someone too.


Story by Louie’s parents, Julie & Kevin - ILLINOIS