Carolyn Dufrene - Congenital Heart Defect Week is Important to My Family and Yours
My husband Rene and I are proud parents to our three adopted children which came to us through foster care. Two of our children have special hearts and congenital heart defect diagnoses.
The word “congenital” means existing at birth. The terms “congenital heart defect” and “congenital heart disease” are often used to mean the same thing, but “defect” is more accurate.
This kind of heart ailment is a defect or abnormality, not a disease. A congenital heart defect (CHD) results when the heart, or blood vessels near the heart, don’t develop normally before birth.
Being a new parent is hard. But being a new parent to a child whose heart needs extra attention takes strength. It was not our intent to foster and then adopt special needs sons, but God had other plans. Christopher (12) has Tetralogy of Fallot and has had one heart surgery to date, with another expected in about three years. Henry (10) has Hypoplastic Right Ventricle and has had five heart surgeries, four other surgeries and ten cardiac catheters. Our boys are brave and are fighters. They have been challenged in many ways because of their diagnosis but have risen to answer the challenge. We are proud of them. While their diagnosis does not define them, it has helped to shape who they are and how they see the world.
Each year in February, the world turns its attention to CHD children just like Christopher and Henry. Across the country and beyond, CHD families stand in unison to celebrate the lives of even the littlest hearts. Congenital Heart Defect week is a special week that is dedicated to the conditions that effect at least eight of every 1,000 infants born each year.
While our boys are special to us every day, this week is extraordinary to not only us but everyone who loves our boys, as well as all CHD kids. For this one week each year we put extra emphasis to celebrate how far research, diagnosis and treatment of CHD has come. As recent as even a decade ago there were many congenital heart defects that were not survivable.
We share the CHD journey of our boys with our friends and family through social media. The posts capture the fight and the real life for children born with congenital heart defects. Through sharing their stories, we have found a wonderful network of friends whose children also have special hearts. Sometimes you can feel 'alone' while dealing with kids with such a disability and it's heartwarming to know that there are other families like you that you can lean on. Having that support is necessary. It is hard to remember to take the time, but don’t forget to care for yourself so you can care for them.
As a CHD parent you need to find support to help you through. Look for those who can help you as you help your child in the journey. This could be friends, family, hospital support groups, parent social media groups or even the American Heart Association’s Support Network.
I ask you to join my family and the hundreds of thousands of families like mine, who have been impacted by congenital heart defects by bringing awareness to CHD. It is important to all of us to tell the story of CHD to help those living with these diagnoses.
February 7-11, 2020 is Congenital Heart Defect Week. Some may see a scar, but we see a lifeline.
