Wear Red For Congenital Heart Defect Awareness | 614 Mom
Today you’re likely to see a lot of red. Not only is it the start of February, the month we attribute to love, heart decor, and Valentines Day, but today is National Wear Red Day. National Wear Red Day exists to spread awareness about heart disease. According to the CDC, 1 in 4 deaths are linked to heart disease and heart disease is the leading cause of death in women. These statistics are alarming. As a society, we are educated often about the things we can do to reduce our risk of heart disease: avoid tobacco, exercise regularly, make nutritional food choices and try to keep cholesterol and blood pressure low. What we don’t hear as much about, though, are the lives that are affected by heart disease from the very start.
Congenital Heart Defects (CHDs) happen in 1 out of 100 children, making CHDs the most common birth defect (Pediatric Congenital Heart Association). There are 2-3 million adults living with CHDs and 40,000 babies born in the US each year with CHDs. According to Heart Heroes, there are over 40 identified types of CHDs and these types vary greatly in severity. All Congenital Heart Defects require monitoring for a lifetime. For 25% of babies born with CHDs, surgery is required. For some children, the complications of a CHD cannot be repaired, making it also the leading cause of death in infants related to a birth defect. (PCHA)
It’s hard to think about something like this, but it is also important. As mentioned, CHDs are prevalent, and yet, there is a lack of awareness surrounding them. My daughter is 1 in 100. When my husband, 2-year-old son, and I went to our 20-week anatomy scan, we had one thing on our mind- find out the gender of our baby and plan a fun reveal party. After what felt like an abnormally long ultrasound, what was revealed to us was more than we anticipated. Prior to this, my knowledge of Congenital Heart Defects was very limited. I knew that a family friend had surgery as a young child and had a scar on his chest, but that was the extent of my understanding. When a doctor came in following the ultrasound and paired the words “heart” and “defect” my body went limp. Honestly, I don’t remember much more from that appointment as I wept in my husband’s arms. Most of what he said felt like a foreign language to me, but after picking myself back up a few weeks later, I set out to educate myself and others.
As a mother, the two things I immediately wondered is if I did something to cause this struggle for my little girl and how would it affect her life? The causes of CHDs are largely unknown. However, there are some factors such as genetics and environmental factors that can play a part (American Academy of Pediatrics). For our family, we have yet to discover any substantial links after evaluating the environmental factors and completing extensive genetic testing both prenatally and after birth.
As for the long term effects, children with CHDs may have other physical and developmental disorders and are often linked with other congenital defects. Today we are seeing more infants grow into adolescence and adulthood due to continual research and treatment progress. Prenatal diagnosis can help a family like ours prepare for this life change, and yet currently only a fraction of CHDs are spotted before the baby is born (and still yet some are not detected until the baby is older and displays complications or a doctor detects a murmur.)
Here in Central Ohio, we are fortunate to have a highly recognized cardiology team at Nationwide Children’s Hospital. NCH performs hundreds of heart surgeries each year on patients from hours old into their adult lives. NCH is highly rated as an innovative hospital with consistent growth and outcomes.
For our family, this diagnosis rocked our world and yet it also sparked a new appreciation in us. As I mentioned before, we received this diagnosis prenatally. It was at this appointment that we heard the name “Tetralogy of Fallot” for the first time. While most people go to a 20-week ultrasound calling it the “gender” ultrasound, this is truly called an “anatomy scan.” I encourage all mothers to be aware of what can be discovered at these scans aside from gender- whether it is a CHD or other birth defect, early detection can have a huge impact on the planning and treatment possibilities. Don’t be afraid to prepare questions to ask throughout your scan and ensure that your team is looking carefully at each part of your baby in utero. I am forever grateful for our ultrasound tech who spent extra time exploring our baby’s heart because she saw something that looked abnormal.
Our little girl, Sage, will have a reparative open heart surgery this spring. She will be a mere 5 months old when she undergoes surgery. There is no cure for CHDs, but 25% of children receive reparative surgeries. Some children undergo surgery within days or weeks of birth, many have surgery within their first year, and some are able to wait longer. Many will also have subsequent surgeries. We expect our daughter to have a subsequent surgery in her teen years to continue to repair her faulty valve. From the outside, you would never know that one of her vital organs is failing her body. She cries when she’s hungry, she loves her milk, she laughs at her big brother and fits right into our family. Some days I completely forget about her heart defect, and some days it fills my mind at all hours (you can read more about the mental journey on my personal blog).
Congenital Heart Defects are prevalent, but our awareness of them is not. More than likely, you know someone who has a CHD but you may never know from the outside. We do not have a cure for CHDs, but we have the ability to educate ourselves and others and support those who are facing this complication. Today as you see red, take a moment to talk about what you may have learned about heart disease and congenital heart defects. Share something with a co-worker, a family member, or a friend you see this weekend. Take a moment to read more about how Nationwide Children's Hospital serves the heart community every day and celebrate these hearts by loving on your family a little extra as we enjoy all that February brings.