February is known to be the month of love. The month of roses, I love you’s and conversation candy hearts. Everyone knows this. But few people know that February is Congenital Heart Defect Awareness Month. And why would you unless you were personally affected? I was uninformed until my daughter, Harper, was born with a complete AV Canal Defect and Down syndrome, in August 2011. Now we celebrate February 1st by wearing red for heart disease awareness and celebrate World Down syndrome Day on March 21st.
These celebrations wouldn’t have meant anything to me 2 years ago. I was early in my pregnancy in February 2011 and selfishly unaware of Congenital Heart Defect Awareness month. And also unaware that, my newly created daughter, was going to be born with defects.
Harper was prenatally diagnosed with both Down syndrome and a complete AV Canal Defect when I was 20 weeks pregnant via amniocentesis and ultrasound. We chose to continue the pregnancy. We chose to have her heart fixed. We chose Harper. We chose love.
I’m not in the medical field so I will leave the specifics up to the professionals but basically; this heart defect consists of multiple holes in her heart. This defect occurs in two out of 10,000 births and is common in children with Down syndrome. She was 4 months old when her heart was successfully repaired at American Family Children’s Hospital. During the 4 months before her surgery we worried, cried, prayed, and wished that Harper would survive and then thrive. We were unprepared for the amount of support we received from family, friends, complete strangers, and especially the staff at American Family Children’s Hospital. When given a chance, people want to help and to become aware. During Harper’s hospital stay is when I decided to pay it forward. I needed to payback society for all of the love they gave my family.
I think about Down syndrome almost on regular basis and talk about it to friends, family, and complete strangers often. It’s a part of our daily life but it is not the only part of Harper. She is much more than a syndrome or a defect. Harper has taught so many people that it is perfectly normal to be different. Down syndrome is not scary. Her heart defect was scary but fixable. She is not going to break. Her strength drives me teach others. As her mom, it is my job to help others become as accepting as I have become. That is what Harper’s “defects have taught me.
My family tries to do our part. We are members of the Madison Area Down syndrome Society, took part and fund raised for the Step Up for Down syndrome Walk in October, and my husband is taking part in the Polar Plunge. I can see the questions in stranger’s eyes. It’s ok to be curious. Acceptance is achieved through knowledge. Knowledge is widely spread with events such as the Wear Red campaign or Spread the Word to End the Word among a dozen others.
We want our community and the world to not be afraid of Down syndrome. Harper is a loving yet sassy 17-month-old girl. We want the world to know that she is a fighter. She survived open heart surgery and will thrive in her everyday life, Down syndrome or not. It’s important to celebrate days and months like Wear Red for Heart Disease Day, Congenital Heart Defect Awareness Month, World Down syndrome Day, or whatever day is important to you. Take a stand, help bring awareness, and celebrate what you care about.
February is the month of love but more importantly the month of awareness. Whether you become more aware of how congenital heart defects can affect someone’s life, you attend a Down syndrome fundraiser, or you just open your heart to acceptance. Celebrate your love on February 14th but help celebrate happy hearts all month long.