The week of February 7th-14th is a special week; of course Valentine’s day falls within this week, along with the excitement of preparing for it, but this week is also known as CHD Awareness Week.
The simplest way to explain a CHD — otherwise known as a congenital heart defect — is a condition in which something is wrong with the structure of the heart. That can include many things such as issues with the valves or holes in the heart itself, and it is present at birth; hence, it is given the name “congenital” heart defect.
The severity of CHD is determined on a case to case basis — for some people, it doesn’t affect them and they may never even know what a CHD is or that they have one. For others, it impacts their everyday life.
In fact, 1 in 110 people are expected to have CHDs; you can read more on where that number came from here, but the phrase “1 in 110” is commonly used when raising awareness for CHDs.
The role that CHD has played in my family is even greater than what most people face because there are two critical conditions in my immediate family.
My mom was first diagnosed with having an ASD (atrial septal defect) while she was pregnant with me (her first child) and had to go into surgery for it while I was still a newborn. 13 years later, my mom had her third child: my sister Kendyl, who was diagnosed with both an ASD and a VSD (ventricular septal defect) when she was only one day old after being tested because the doctors heard a murmur.
It was hard from the beginning and things escalated quickly: it went from her doctors saying that she would probably need to have surgery in the future to her needing two heart surgeries before she was even a year old. The second surgery — like our mom’s — was a major open heart surgery that involved cutting through her ribs and into her heart to repair the holes, leaving her with wires on the inside and a scar on the outside.
Six years later for Kendyl and 19 years later for my mom, my family is still impacted. Even though the holes were fixed, their chests are still held together by wires and their hearts aren’t close to perfect; it’s scary for all of us.
Kendyl, having had the surgery when she was so young, has experienced delays in speech development among several other areas, and continues to be affected in the activities that she can or can’t do with her peers such as sports or even getting her ears pierced.
Today, Kendyl is in kindergarten and thriving, but the cold and flu season is a real pain, especially while in school. Everyone is being exposed, but for Kendyl, these everyday viruses could lead to life-altering consequences. The amount of times she has been sick this year alone has been enough to raise concern for my mother and her team of cardiologists who are currently looking into what else is going on with her heart.
All of the other children and adults affected by CHD are never going to have normal lives, and neither will their families who are there with them through it all.
So this is the week where we come together to support one another and raise awareness for the struggles of those who are going through life with a CHD. This is also the week where we celebrate how far everyone has come despite these struggles.
For my family, it is about being proud of my mother who is doing a great job at raising three kids — one of whom has a CHD — after fighting for her life that day 19 years ago and every day since. It is being proud of my youngest sister, Kendyl, who has come a long way and made major improvements in her speech among everything else, even though arguments with a six year old are pretty rough and intense.
This week is also to show that this issue is more serious than most think. A little cold isn’t so little when it causes someone’s brother or sister, mom or dad, etc, to need another surgery or possibly an even worse outcome. Respect and be proud of these people, but please understand the severity of the situation.
Most importantly, this week is about all of us coming together. The struggles I described for Kendyl are happening to more families than you think. Every day you are proud of the people within your family, but this week we need to be proud of everyone fighting a CHD and their families going through it alongside them.
For more information on CHD awareness week and the experiences of the people affected, check out the Facebook page for Mended Little Hearts National Organization here.