Every year during the week of February 7th-14th, everyone is focused on Valentines, Galentines, and even Palentines. However, in my family, this week is something more important, this week is also CHD Awareness Week.
Congenital Heart Defects, more commonly known as CHD’s, a phrase coined by Mended Little Hearts, is known to affect 1 in 110 people. Mended Little Hearts, or MLH, also shares that “about 40,000 new families are brought into the world of CHD every year.”
In my family’s experience, MLH has been incredibly helpful and supportive, especially in connecting families together and offering resources and information for the friends and families of those impacted.
My family, however, has a unique experience as both my mother and youngest sister have CHDs.
My mom, Sheena (40), was diagnosed at 19 years old with an ASD (Atrial Septal Defect) which indicates where the hole in the heart is. My sister, Kendyl (8), was diagnosed when she was a newborn with both an ASD and VSD (Ventricular Septal Defect). Further complicating things, both of them had to have major open heart surgeries in order to fix the holes.
A majority of patients don’t require these surgeries, but both of them had severe defects that needed to be fixed.
With my mother, her story is different and even more inspiring as this condition is typically detected when someone is a baby, but hers was discovered while she was pregnant with me and so she had to undergo surgery shortly after I was born. Throughout the whole time, the doctors were trying to help a grown woman when they were trained to be helping children.
Kendyl initially wasn’t thought to need surgery, but when she was a few months old she had to undergo two heart surgeries.
Having a CHD affects every day life and never goes away, even once it’s ‘mended’. Those who require heart surgery have to be especially careful in everything they do, particularly with things like physical activity and dealing with stress. When dealing with Covid, most people are only sick for a week or two, but in their case they were sick for months and had more implications than the typical person.
Regarding Kendyl, having had a surgery at such a young age pushed her behind her peers in mainly speech but a few other aspects as well. She has spent the past year working with specialists and working towards bettering her speech, and we are all beyond proud of her and how far she has come given her struggles.
Go green for life, but myself and my entire family will be forever grateful for Kendyl’s heart team at the University of Michigan Hospital.
Rock your scars (a phrase also coined by MLH, meaning show your heart surgery scars and be proud of them), I am so proud and continuously inspired by you both and everyone else who has gone through similar experiences.
Keep raising awareness, keep fighting. Keep supporting those in your life who are impacted by CHDs.
Check out the article I wrote about CHD awareness week in 2020 here.