I became a Heart Mom on October 21, 2015. It’s the day that changed my life forever. While having an ultrasound at 20 weeks pregnant, it was discovered that my son has a Congenital Heart Defect (CHD). A heart problem was the furthest thing from my mind, and suddenly I was launched into a world full of terminology I didn’t understand and forced to learn quickly, so that I could make life saving decisions for our son. During my crash course in Congenital Heart Defects, I learned that it’s not as rare as I thought. In fact, Congenital Heart Defects are the most common birth defects worldwide. CHD takes the lives of more children each year than all childhood cancers combined. As prevalent and deadly as heart defects are, research is grossly underfunded and the public is vastly unaware.
What I Didn’t Know about Congenital Heart Defects
According to The Children’s Heart Foundation and the American Heart Association, 40,000 babies are born in the United States with a Congenital Heart Defect each year. Of those children born with a CHD, 8,000 of them won’t live to see their first birthday. CHDs are the most common and most lethal birth defect worldwide, with over 40 different types and no known prevention or cure. Simply put, 1 in 100 babies are born with a Congenital Heart Defect. 1 in 100! There are no cures, but there are life saving surgeries and measures that can be taken so that the 1.8 million people in the U.S. who are living with this disease can survive.
With so many different types of Congenital Heart Defects, I’m often asked which type is the worst. Honestly, it’s the one your child has. In reality, all heart defect can be a death sentence without medical intervention. More than half of all babies born with a CHD will undergo at least one invasive surgery in their lifetime. I will never be able to describe what it feels like to hand your newborn over to a surgeon who will operate on their walnut-sized heart and save their life. What I can tell you are the things you should know to ask when you’re expecting your next child.
What You Need to Know (and Ask)
I, like so many others, thought of the 20-week anatomy scan as a “gender scan.” I knew they would be looking at all of my baby’s anatomy. However, it didn’t occur to me to ask specific questions about my baby’s heart. This is so important because only one third of all babies born with a CHD are diagnosed in utero. Another third are diagnosed at birth, and the final third are diagnosed only after illness or death. A diagnosis in utero is ideal, since life-saving measures can be put into place from the beginning and a plan can be made to aid in the birth and keep your baby safe. Here are 6 questions you need to ask during your 18 – 20 week ultrasound, as provided by the Boston Children’s Hospital Heart Center:
- Do you see four chambers in the baby’s heart?
- Are there two upper chambers (left and right atria), each with a valve controlling blood flow out of them?
- Are there two lower chambers (left and right ventricles), each with a valve controlling blood flow out of them?
- Do the two vessels leaving the heart (aorta and pulmonary artery) cross each other as they exit?
- Is the wall between the two lower chambers intact, without any holes?
- Is everything else in the heart normal?
What You Can Do to Help
The first thing you can do is to spread awareness. Congenital Heart Defect Awareness occurs the week of February 7, 2018. However, it’s something that needs to happen all year long. Remind your pregnant friends and family members about asking the six questions above during their ultrasound. If you’re expecting a new baby, don’t be afraid to ask these questions yourself. By asking these questions, you can ensure that they’re paying close attention to your baby’s heart.
The next thing you can do is support research funding. This is as simple as making a donation to a specific research foundation or participating in a fundraising event. Even though it’s the most common birth defect, CHD research is grossly underfunded. In recent years, death rates related to Congenital Heart Defects have declined by 30% because of medical advances. If not for the advances being made in medical and surgical techniques, my own son would have died had he been born 30 years ago. Still, more funding for research is necessary. I hope that one day Congenital Heart Defects can be prevented and cured. Until that day, I hope that all of our Heart Warrior children continue to fight and survive.