Happy Congenital Heart Defect Awareness Day!

Congenital Heart Defect Awareness Day!

It is hard to believe that three years ago this week, our little Christopher was born. The next day we were told of some news that would forever change our life and the way we look at it...

Congenital Heart Defects are the #1 birth defect in America. Nearly 1 out of every 85 babies are born with a Congenital Heart Defect in the United States. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime. Our son was one of them, Christopher Patrick was born as what we thought to be a healthy baby boy on February 16, 2006. Later that evening, I decided to send him to the nursery so I could get some much needed rest. While he was in the nursery, a nurse heard what sounded like a heart murmur. As a precaution, our pediatrician asked that a pediatric cardiologist listen to Christopher to determine if the sound was anything serious. We were informed that many babies are born with these abnormalities and that most of the time the heart continues to perform adequately, allowing the child to live a normal, active life. This was not the case for Christopher. After Dr. Brumund, the pediatric cardiologist, examined Christopher we learned that he had four defects in his heart that were not allowing his body to receive adequate oxygen. He was diagnosed as having Tetralogy of Fallot, one of the 35 different types of congenital heart defects. Little is known about the cause of Congenital Heart Defects and there is not a cure for any of them. Many of them can be managed and monitored and some innocent murmors can dissolve on their own, but unfortunately, no cure for CHDs. We were blind sighted by this because, throughout the pregnancy, we thought we had a healthy baby. Instead, we were informed that Christopher would have to have open heart surgery soon and the best pediatric cardiac surgeon for Christopher's case was located in Boston. The thought of our newborn son going to have such an extensive procedure brought many questions of logistics, the future, and of course, probability. We began to wonder...."Would our son make it through this surgery and if he does, will he be able to live a 'normal' life?" We had worried how David, Christopher's three year old big brother, would react to his "new" brother. We now had the added fear and guilt of having to leave David behind with his Grandparents to help care for Christopher in Boston.

Christopher's open heart surgery lasted over seven hours in Boston. Our time was spent praying and waiting, only to be interrupted by a brief update of the procedure and the comfort of the arrival of David and his Grandparents. A big sigh of relief was breathed as the surgeon approached us with the greeting, "He is OK!!" Although Christopher's stay in Boston had a few unforeseen delays, our baby's heart would end up functioning on its own and relatively normal!

This week, Christopher will be celebrating his third birthday with his six year old brother David and his two year old little brother, Jacob. He enjoys running, climbing, rough-housing and any other typical active little boy activity.

I am so thankful that we sent Christopher to the nursery and we are forever grateful for the wonderful and thorough nurses at Woman's Hospital in Baton Rouge for detecting Christopher's heart defects. 1 in 10 babies who die from CHDs in the first year are not diagnosed until death. This could have easily been the case with Christopher. Some of these babies could be saved by a simple non-invasive pulse oximetry test or echo cardiogram, but for some reason they are not routinely performed. We were also blessed to have Dr. Brumund, the pediatric cardiologist on call that weekend of his birth. Early detection is one of the keys to survival with Congenital Heart Defects. Although I wouldn't wish a Congenital Heart Defect on anyone- it has truly enriched and made us re-prioritize our life...and for that, I am thankful.

...That was a written up for a local publication...Here is where we need your help! Congenital Heart Defects are a very serious problem, far more common and killing more children than ALL of the childhood cancers combined. I know that three years ago this very day, I did not know anything about children having heart disease. I had never met anyone that had a CHD child and I never in a million years would have thought that I would have a child born with a heart defect (much less four!!). Christopher ended up being the one of 25,000 that were born that year alone.

Many of you remember the many e-mails and pleas about us organizing the first fundraiser for the Louisiana Pediatric Cardiology Foundation. On March 26-29, we will be hosting the third annual LPCF Tennis Tournament at the Country Club of Louisiana. If you play tennis, the players have had a great time the past two years. If you don't play tennis, you are welcome to attend our Gala at CCLA on Saturday, March 28. Tickets will be available soon. If you have a business and would like to help sponsor this major event - we need your help to help the local CHD families!!

Your financial support is so very important, but if you can't give financially, please consider helping by keeping us in your prayers or another important way - GIVE BLOOD! All of our children that have open heart surgeries are given blood transfusions. The cheesy gifts and t-shirts they give don't compare to the fact that you could have been the one that helped save my son's life!

For more information on LPCF, click on our website below. If you click on my name you'll be rerouted to another CHD website (not local) that has a lot of great info too!

Happy Congenital Heart Defect Awareness Day!
Julie

http://www.lpcf.com/

WHY? For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects, the most common birth defect. (Children's Heart Foundation)