The Traveling Heart (aka Congenital Heart Defect Awareness Week)
Hi friends!! Well, the second annual Traveling Heart for Congenital Heart Defect Awareness Week has come and gone, February’s Heart Health month is over and March has rolled in with it’s storms and rain. This year “The Traveling Heart” connected me to some amazing people on Instagram/Facebook and brought awareness to so many people. However, I felt like the traveling heart should also be shared with all of you reading this little blog of mine…because after all CHD Awareness shouldn’t just be highlighted in one week…it should be shared and highlighted as much as possible.
For those of you that don’t follow me on social media, every year in honor of Congenital Heart Defect Awareness Week I take my “heart” around to some of my favorite spots out on the recovery trail and post a fact about CHD and about what many of us are facing. So, this blog post is the compilation of that week and a way to continue the advocacy! I hope you enjoy my “traveling heart!”
I thought it would be fitting to start the week by taking my “heart” out to my favorite trail for the first fact. 1 in 100 babies are born with a Congenital Heart Defect, making them the No.1 cause of birth defect related deaths and the leading cause of all infant deaths in the United States. This is just one of the reasons I feel so lucky to be a survivor!
This year instead of using a normal paper heart like last year, I decided to find one that would reflect the uniqueness of a CHD patient. Congenital heart defects range from single heart murmurs to more critical defects. There are close to 40 different types of CHDs and around 12 are classified by the CDC as critical (I have a mixture of at least 2 critical defects and one of those contains 4 various defects within itself…yes its like the matrix..lol). So even though, it is the most common birth defect, it is important to see how varied the community is. Our hearts have holes, stents, missing pieces, rewired pieces, our heartbeats have their own unique rhythms…no two are alike.
On this specific day I focused on screening and early detection. Some CHDs may be diagnosed during pregnancy using a fetal echocardiogram. However, some are not detected until after birth. That is why it is so important that pulse oximetry screenings happen within the first 24 hours of life. CDC estimates that, each year, an additional 1,200 newborns with a critical CHD could be identified at birth by hospitals screening, before they even show signs of having a critical CHD. Some babies born with CHD appear healthy at first and may be sent home with their families before detection. Although a majority of hospitals do this test, there are currently still 13 states that do not have legislation requiring this testing to be done (This still shocks me!). Just another reason why I think it is important for everyone to know about the screening, ask about it and be educated!
I decided to give CHD a face to go along with the facts. It is estimated that 2,000,000 individuals with Congenital Heart Defects are thought to be living in the United States. However, there is no national tracking system beyond early childhood, so there are no precise estimates. We know that it is the most common birth defect, we know that they are the leading cause of birth defect associated infant illness and death and we also know that CHD babies are now living longer. Adults with CHD have 3-4 times higher rates of ER visits, hospitalizations and Intensive Care Unit states…which is an accurate statement for myself. Maybe it’s just me but I think it is time that CHD started to gain the attention, the funding and the research that will help adequately track and treat those battling these defects. This is when I hope people start to stand with me and those 2 million who are fighting and battling CHD and help spread this message.
During CHD Awareness week it was a mix of hot sunshine moments and rain cloud interruptions, which is a great representation of how many CHD patients have to weather anything that is thrown at them. Which I think is a perfect anecdote for the next fact. Did you know that the CDC estimates that over $1.9 billion dollars are year are spent on hospital care for individuals with CHD? Many procedures are still considered new and therefore can make it difficult for families or adults with CHD to deal with insurance companies. Most families/adults end up traveling out of state to see specific doctors who have mastered a new technique or created a new device that will allow a better quality of life (up until adulthood my family spent summers traveling from Oregon to the Mayo Clinic in Minnesota for every operation). My hope is that with more awareness there will be more financial support and opportunities for the CHD community…that someday our treatment will have more value in the eyes of the country and allow families/adults to jump through less hoops during some of those rainy days.
This day wasn’t about a fact, or a statistic about CHD…it was a reminder that the road for heart warriors is long. Sometimes a daily activity, a walk, taking a breath, a heartbeat or even a hobby can seem like a marathon. While some may look at this photo and see a short walk to a gorgeous view…a person with CHD could see this as a gorgeous view waiting for them after surgery, or after the next patch is placed, or after a few months of healing. In fact I could only make it halfway down the dock before I ran out of energy. So remember us heart warriors as you climb your favorite hill, or you walk to your favorite viewpoint…I know I will continue to fight until someday this journey won’t seem so long. This is why I advocate, this is why I fight for more research and why we all pray for new ways to help us feel better…even though we know there is no cure, we all want to make it to the view at the end of the recovery trail.
The last day of Congenital Heart Defect Awareness week is devoted to heart warriors struggling with CHD and to those who have lost their life battling. This is in remembrance of the little and big hearts that have been taken too soon by these defects. My prayers, my love, my heart and my view from the recovery trail is dedicated to them.
That marked the end of the 2nd Annual Traveling Heart…aka Congenital Heart Defect Awareness Week. I was so surprised by the overwhelming reception of love and support that was found and given during those posts. I hope that this speaks to you and does the same.Please feel free to share this link, keep this message moving.
Someday we will live in a world where fixes for CHD come faster, where more people see the value in supporting the advancement in research and that nationally we find a larger platform to educate everyone about CHD. Until then please keep heart families, heart warriors like myself and those looking after us in your prayers. There is no cure but I will continue to have HOPE along the view from the recovery trail! Love you all!!