Rocco's Heart

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Get a scroller sign at spacemisc.com! ............................................................ .......Wow! What a difference a year makes….In the early part of 2007 we found out we were going to have another baby. About halfway through the pregnancy we were told that there was something very wrong with the baby’s heart and life just hasn’t been the same since.Rocco was born on October 21, 2007 in Ann Arbor. He endured a number of heart surgeries and procedures and spent most of three months in the Peds Cardio Thoracic Unit (ICU) at U of Michigan’s CS Mott Children’s Hospital. Sadly, our sweet little boy lost his fight on January 17th, 2008. Rocco’s purpose was greater than we knew and we are so very thankful that we had the time with him that we did.Rocco had a very serious heart defect called Hypoplastic Left Heart Syndrome. I had never heard of it prior to his diagnosis and was, at best, vaguely familiar with any type of Congenital Heart Defect. Although statistics vary slightly, CHDs affect approximately 1 out of every 100 births! Seriously?! We have five kids – how did I not know that the risk of a congenital heart defect was so real? Many heart defects are fairly minor and are easily corrected and the advances being made are amazing! The teams of doctors, nurses and specialists working to improve treatment options are making strides, but more must be done. Also, CHDs can often accompany other more serious defects, so every situation can be different.Our time with Rocco opened our eyes to opportunities we had no idea existed. We saw a need to help fund research so that even more can be known about Congenital Heart Defects and how to help correct them. Through research, current methods of detection and treatment options can continue to improve. Perhaps someday soon, another child will benefit from what Rocco was able to teach us.During our three months in Ann Arbor, we also experienced some of the challenges that arise during a lengthy (and emotional) stay away from home. As a result, we knew there was a need to reach out and offer support to families during lengthy hospital stays. We met heart families from all over the world! Each family had a very different story to tell, but we all ended up in Ann Arbor, MI hoping for the best for our children.Finally, we felt the need to share our experiences in hopes of raising awareness of Congenital Heart Defects. Too often parents are told that there are no options available and that nothing can be done to save their child. Everyone has differing beliefs, but it important to present parents with all of the options. Heart defects are very complex and some doctors are not familiar with all of the avenues of treatment. Sometimes parents must take it upon themselves to do the research and find answers and consider all of the options that may be available. Also, it is important to remember that medical advances are changing and evolving every day! What may not be possible in a certain region might be the specialty of another. Procedures that were considered experimental last year could be saving hundreds of lives the next! Be informed and get educated – the information is out there!From the opportunities created through Rocco’s fight, a foundation was born. “Rocco’s Heart – an HLHS Foundation” was established in March of 2008 to help make a difference. Through generous donations of time, money and support, Rocco’s Heart is up and running!Thank you so much to everyone who has helped to make this possible. We are grateful for the opportunities that have been presented and hope that Rocco’s Heart will help to make a difference for many. Most of all, we are thankful for Rocco and his amazing spirit. He taught us all a great deal in three short months and we are better people because of it. It’s not the years in your life, but the life in your years. We love you baby!!......................Go to Rocco's Heart .org
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Throughout our journey with Rocco we kept a blog to update family and friends. Please read back through our posts to learn more about Rocco's story and how "Rocco's Heart - an HLHS Foundation, inc." came to be. We are proud to be able to share our memories and experiences with all of you. All our best... RH.. .. .... ....
Get a scroller sign at spacemisc.com! My name is Rocco. I am due on November 3rd, 2007. My Mom & Dad live in Grandville, MI and they just found out that I have a very serious heart defect. We have seen specialists in Grand Rapids who believe I have Hypoplastic Left Heart Syndrome. It is a rare and very serious heart defect that affects about one in every 5,000 babies. Basically, the left side of my heart is severely under-developed, including the left ventricle and aorta and probably will not be able to function properly. We are going to the University of Michigan's Congenital Heart Center to meet with Pediatric Heart Specialists to find out more. Typically, treatment options are a series of three surguries performed during the first 18-months to two years of life or a heart transplant. Please keep me in your thoughts and hope for a healthy outcome! I can't wait to meet you all! Love, RoccoWow!! Have we come a long way since we first found out there might be something wrong and since we started this page! First of all, let me say a great big THANK YOU!!! to each and every one of you who have offered your kindness, thoughts, prayers, time and positive energy. I am so blown away by the amount of support we have had and continue to have as we travel this path to keep Rocco healthy. We love you all very much and are so thankful to have you in our lives. I thought I'd take a couple of minutes to update the info. here (just to keep you up to speed)... Rocco does have HLHS. Also, during our second Echocardiogram at U of Michigan, the Cardiologist observed that the flow of oxygenated blood was restricted because the hole in his atrial septum had closed prematurely. As a result, we were faced with a couple of options ranging from "wait and see" to an in-utero surgical procedure. Fortunately, surgery was a possibility and on the 16th of September we headed to Boston in hopes that we could ease our little guy's struggles and improve his health. The team of doctors, nurses and specialists at Boston's Children's Hospital and Brigham and Women's Hospital were amazing and we are very thankful that we had the opportunity to meet them. Rocco continues to grow and move (actually, he seems stronger than ever!). Although he will still have a long road ahead of him, we can not wait to see our baby boy and watch him grow up healthy and strong. We are so grateful for all that we have and all of the amazing people who have shared their stories, words of encouragement and positive energy. You are all so very special to us and to our family. Thanks for everything! Much love & hugs and kisses - Crista & Scotty and Rocco's brothers and sisters. ----------------------------------------------
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