Our Letters of Hope

I wasn't real sure as to what I should write but knew that I should write something. I have tossed it around in my head many times over and finally just decided that the best thing for me to write about or from was the heart. Because that's what this is all about.The heart. I never knew much about CHD's, let alone HLHS/HRHS, or any of the many other heart defects there are. And I never knew that there were so many children affected by these daily. I know that as a medical professional I have seen and heard alot. But never did I expect to see what I did. I first became aware of this crisis when my grandson was born 4 months prematurely and had to be taken to the Universtiy of Michigan for an emergency surgery. We were told that his bowels had ruptured and would require an immediate surgery.Over the next several days all the things that I had heard about became reality for my daughter and myself. Even though I knew what the March of Dimes was and had always contributed I never really knew the extent of what they really do. Our dear precious little one was born so early and had many trials to face if he even survived past those first few days. We had no idea what we were about to face. It all seemed like a horrible dream. How could this be happening? Why was this happening? We had no answers to these questions. Over the next few days we would realize that there would be many obstacles or challenges that he and us would face. He made it through the first bowel surgery and started to improve slightly. However there were more complications. We were told that since he was born so early that there were many things that could go wrong. One of these things was discovered a few days later during a routine x-ray. They found a hole in his heart. it was referred to as a PAD. Which stood for Patent Arteriosis Ductosis. Which is a common thing in premature infants. They stated that sometimes they closed on their own, sometimes they didn't. If his didn't he would require surgery to close it. As with any condition in premature infants this was very serious. We were so unsure of what would happen if this tiny little one had to have heart surgery. How could they do surgery on someone so little. It was explained to us that they did this all the time. That they had an entire unit designated to babies born with Congenital Heart Defects. How did this happen, was it hereditary, was it something that only happened in premature babies? There were no answers to these questions. None that would satisfy us anyways. During all of this we came into contact with many families of various little ones there in the hospital who were staying at the Ronald McDonald House. One of those people was a young lady named Jessica. Her little boy Ethin was born with HLHS. She explained to us all that she had gone through so far with this little one and how much more he would have to face. He was not alone though. There were so many who she had come across that were in the same situation as her little one. She told us about the carepage that she had set up for her little one and through his page I became aware of so many more across the United States that were born with the same conditions and some with much more severe conditions. These were things I had never heard of. How could there be no funding for this type of research or for this type of care when it was so desperately needed. How could these young parents just let their little ones go without a fight. How could anyone not understand why this needed to be brought out into the light. My heart broke every time I read another one of those carepage updates, or when a little one got his angels wings. I joined in the fight to make this more publicly known. I have shared each and everyone of these stories with my coworkers. We pray for the little ones who lose the battle and for those still fighting. And for those being born every day with a CHD. This affects nearly 40,000 babies every year.. This kills more infants than childhood cancers. Yet there is no funding for it. How is that possible. I cannot let a day go by that I don't check out the carepages, or that I am not following one of them through their struggles. I love reading of their triumphs and cry for them when things do not go well. I am currently following approximately 20 different care page children across the US and pray each day for a cure for these life threatening illnesses. I cannot say that my life has not been changed by meeting these little ones or becoming involved because it has. I know consider myself to be a surrogate grandmother for Ethin, as his mother and my daughter have become very close and we hope that someday both the boys will be able to run and play together as we all sit by and watch. I have watched Ethin grow and struggle through each procedure and have watched Jessica be the best mom she can be not only for herself and Ethin but for the triple J's who love and miss thier mother and baby brother daily. They will continue to fight until there is an answer, and I will continue to pray for each and every one of them. Keep up the fight Ethin, Logan, Zoe, Joey, Derrick, Josh, and Brady.

You are not alone,

Patricia Pierce( Brady's gram)