February is Heart Month: and CHD (Congenital Heart Defect) Awareness Month

Congenital Heart Disease (CHD) Awareness Week for 2018  is February 7th – 14th 2018

and February is Heart Month to also support!

Before 2015, February meant Super Bowl Sunday and heart shaped everything. I was pregnant with my third little girl and had just found out at 36 weeks pregnant that she would be born with a congenital heart defect, Atrioventricular Septal Defect (AVSD). Atrioventricular Septal Defect (AVSD) is a deficiency of the atrioventricular septum of the heart. This basically meant that she had a large hole in her heart and the the blood doesn’t pump properly through the valves.

I had two perfectly healthy children, a 5 and 6 year old at home and this news devastated our whole family. I was referred to a Perinatologist who began to sketch a heart and explain the condition, but I could barely process any of it. All I knew was there was something wrong with my baby and the mom guilt sank in hard. I played back every “wrong move” I made during pregnancy.

Too much caffeine and junk food?

Lack of exercise?

Despite reassurance from every doctor and nurse that this was in no way my fault, the guilt remained.

Every day after that routine ultrasound was a whirlwind. I spent my last few weeks of my pregnancy in and out of specialist offices, the hospital and a mental black hole. We received our second kick to the gut during one appointment. This particular heart defect is common in children with Down Syndrome. Our baby girl was given a 1 in 3 chance of having Down Syndrome. Since it was so late in my pregnancy, we couldn’t do the genetic testing until after she was born.

Little Miss AC made her debut on February 18, 2015, one week before my scheduled c-section. I was able to give her a quick kiss and cuddle before she was taken to the NICU. A few hours later, we were given more devastating news.

An echocardiogram showed that she had narrowing of one of her aortas and would need a coarctation repair. Without this repair, the aorta risked closing altogether and wouldn’t allow blood to flow through the heart properly which could be potentially fatal. At 5 days old, AC had her first heart surgery to repair the coarctation. It was the hardest thing I had ever been through and I wasn’t the one having open heart surgery. The surgery was a success thanks to the exceptional surgeons, cardiologists and nurses at Rady Children’s. We were able to take her home after a 2 week hospital stay and confirmed Down Syndrome diagnosis.

The months went on and we were at cardiologist appointments what seemed like everyday. At 5 months old, her heart team made the decision that it was time to repair the AVSD. Another open heart surgery at only 5 months old, this little girl was officially the strongest person I knew. We packed our hospital bags and drove the 20 minutes back to Rady Children’s hospital. We were starting to get to know this place top to bottom.

AC’s AVSD repair was a success. After another 2 week stay in the Cardiovascular Intensive Care Unit, we were able to take her home. AC sees her cardiologist twice a year, every year. We know that she will need another open heart surgery eventually, but doctors think it will be a few years. So until then, in addition to Super Bowl Sunday and Valentine’s Day, we will also be celebrating her heart warrior status every single day this month.

Along with heart shaped cookies, of course!

To my littlest love, AC.. You are truly the strongest person I know and I have found my strength in you. You have earned the title Heart Warrior and I hope you are always as brave and resilient as you have been for the past 2 years. 

For more information on how you can support CHD awareness:

Engage on Social Media: Social media is a powertool and can be used to share CHD Awareness to make a large impact. 

#1in110 #CHDAware #RockYourScar2018 and #CHDAwareness